Introduction to me and the site! [Archive] - Spina Bifida Connection Support Forum

Barb

09-26-2007, 01:24 AM

Hi! My name is Barb and I am an admin here at SBC! Years ago I opened this site as a forum for people living with spina bifida. It was a great and active forum but, unfortunately, my real life became very hectic (lots of surgeries) and I also went back to work at the same time. I had to close the board which was very sad for me. I am so happy that we are able to reopen the site and have the financial backing of a parent company to keep it open for the long haul this time!

So, my 'story'. I am a mom to two boys, one who was born with an L3-L4 myelomenigocele. He is 9 years old now. My other is 11. "C" as I will refer to him for short on the boards is recovering from his 1st detethering in May. It has been a LONG road. He was ambulatory with bilateral afo's prior to but is now using his chair full time. Rather than tell it all in a story I will bullet point his various diagnosis:

shunted hydrocephalus (programmable)
slit ventricle syndrome
chiari II malformation (decompressed at age 3)
cecostomy
autistic spectrum (very high functioning)
latex allergic (has had anaphytic reaction)Now the IMPORTANT stuff:

He is very, very cute (no, really he is!)
On grade level in all subjects but math (we are homeschooling this year)
Pretty much a typical kid
He loves Disney and Bears
Wants to be a Rock Star or an Imagineer when he grows up
Has a very cool new TiLite chair with light up wheels.So, I guess that about sums it up. I loved sharing with and learning from all the members years ago and I am so lost without the support.

KMkaggerud

10-06-2007, 04:14 PM

Barb, I am glad your boys are doing good. I am a 37 yr old woman with SB. I work as a school teacher of kids ages 0- 5 with special needs. I was using crutches for my whole childhood. I went to using a chair most of the time in my early twenties and have found that I am more active now being a chair user than I was when I was using my crutches. I also have a Learning Disabled. I had problems with my reading that I had until I was a senior in high school.

Barb

10-06-2007, 09:58 PM

I used to be a teacher! Do you work for an early intervention program?

junior

10-09-2007, 08:29 PM

Holly

01-14-2008, 01:21 AM

I guess it is time that I join in here :) I do not have SB or have a child that does but I consider Barb an extremely good friend and she has taught me so much about SB! Her son C is an absolute delight and he really cracks me up! I may not be able to answer all of your questions as well as her but I am doing my best and I will help in anyway I can. Feel free to educate me if you want me to know something!. I am tech savvy so I can figure out any site problems/questions you might have:) Thanks for letting me be a part of your community and advancing my knowledge of SB!

angel

02-04-2008, 11:44 PM

I am new. I am looking everywhwere for forums on SB and can't find very many active ones anymore. I am 30 i have L4/L5 Myleo. I am the mother of an 11 year old who also has a neural tube defect. Looking forward to the discussions

Spokie

02-05-2008, 01:38 PM

Hello Angel!

Welcome to the site. I also struggled for long to find a decent SB site.
Stop your search - this is it!!

mommy2cnj

02-05-2008, 02:32 PM

One of the main things is teaching her how "cath" herself. Any suggestions will be greatly appreciated. thank you

I have a 12 yo son who had been cathing himself for quite some time. However, due to the lack of sensation, he ended up creating a false passage which produced a blood clot. Doctors now say that rather than self-cathing below, having a port for him will be the ideal way to conquer this task.

I also have a 9 yo daughter. Due to her developmental disabilities, the question of self-cathing was not raised until recently. Will she be able to do so? I honestly don't know at this time. However, due to one wonderful nurse who called into the Mentor/now Coloplast company, they have little backpacks that are filled with things to help the child learn about the process before attempting to do so.....things such as beading a necklace (to help with fine motor skills, which are also rcv'd in OT), to a deck of cards sequencing the steps (ex: gathering supplies, washing hands, etc).

I thought it was a wonderful idea and can only wish we had this option with son as well.

If anyone would like any more info (contact #, etc), please let me know.

angel

02-06-2008, 01:30 AM

mommy2cnj

02-07-2008, 01:33 PM

Now that I read my post over, I want to make note that the false passage occurs in males....sorry, should have been more specific. At any rate, it was quite the experience, yet we learnt from it!

Dodger67

02-07-2008, 01:57 PM

After a lifetime of struggling with CIC which seemed to have little to no effect on the rate of leakage, I got an artificial sphincter, unfortunately it failed due to being "strangled" by the formation of tough fibrous scar tissue. A few years ago I had a continent diversion done, known as an illeal T-pouch. Problems solved! I now catherterise through a small stoma in my navel. No leaks, no smells, no bags, no hassles! My catheter simply goes everywhere I go. I have a very good capacity (about 400-500cc), enough to sleep through most nights (unless there was beer involved before bedtime!) LOL!

angel

02-07-2008, 05:09 PM

That is good info to have i have a son and though he doesn't cath now you never know if he will have to in the future.

susan

05-15-2008, 07:46 PM

Hi everyone...I'm a little surprised and curious. My 13 year old daughter was diagnosed with SBO today, after a long history of progressively worsening pain and muscle spasm. She's going for a CT on Monday and starts physical therapy next week for the spasms. Online descriptions of older child and adult diagnosed SBO have caused me reason for serious concern, regarding bowel and urinary problems and neurologic damage. Does anyone have any experience in this area? I could use some info from another parent or person in the same boat. Thanks. :sign0009:

angel

05-15-2008, 08:10 PM

I have an 11 year old boy with SBO. Feel free to ask me anything!!

Angel

harmesh

05-29-2008, 04:55 AM

hi there,my name is Harmesh Singh. I'm 31 yrs old & working as a lawyer in Kuala Lumpur. i just got married some time last year to an able bodied person. Its been a pretty interesting experience marrying someone different. :signs116:Am pretty new to this whole blogging thingy so if there are any shortcomings just ignore em :-) i have spina bifida cystica at the L4 level...Coz of this i have urinary & bowel tract incontinence. I also have hydrocephalus for which a VP shunt was inserted when i was very very young. Of course the shunt has been revised repeatedly over they years and so far so good...:-) I think this is more than enough for an intro. If anyone has any questions pls dont hesitate to drop me a line...till then i'm signing off

Dodger67

05-29-2008, 04:13 PM

Hi Harmesh
Welcome to the forum. Please feel free to contribute to any of the threads here and to start your own too if you like.

hdsst3

06-03-2008, 04:51 PM

stub20

06-03-2008, 08:53 PM

Hi, nice to meet you. I dont really live anywhere near there, so i dont know if this is all total facts, but i've been looking around on the net, and the only SB clinic i can find is the one that you have mentioned.

stellalatella

07-01-2008, 03:39 AM

My name is Stella and I was born with multiple birth defects, one among the many is SB. I have had to learn to live with it and all that it has thrown at me. My main goal in joining this forum is to learn to deal with some of the issues that have been obstacles for me my entire life. I have only known 2 other persons with SB, one has passed away, and the other I don't really know well enough to ask tough or personal questions. I look forward to meeting other adults who can help me through this jungle of a journey I call "life".

Thanks in advance for your patience from all!

Moleron

07-03-2008, 12:05 AM

Hello everyone.

My name is Rob I am 34 and have SB. I have been searching the net for a long time trying to find a suitable place for info on how to live with SB. I am a bilateral amputee but when I was young I was a normal functioning kid. I started getting problems with sores on my feet and that was when the roller coaster started. :P Looking forward to talking with all of you.

Barb

07-03-2008, 12:50 AM

Nice to meet all the new comers!:Banane21:

Purpleswan

07-05-2008, 08:46 PM

Hello, I am new here and I don't have SB or a child with it. What I do have is a boyfriend that does. I want to understand better about what he has to deal with and be better prepared to talk about things if he choses. I Love him very much but feel he is holding back because of doubts about my staying ability. I want to learn more about what life is like with SB and are there things I must know? I am not even sure what to ask at this point.
Swan

ollieholmes

07-05-2008, 11:51 PM

SkyhawkTR

07-09-2008, 04:04 PM

Hi, Thank you for the wonderful site. My wife (SweetfaceNC) and I just found out Thursday that our 19 week daughter (due in Nov), has been diagnosed with SB, too young to figure out exactly where, but lumbar/sacral region. My wife and I have been reading anything on the internet to educate ourselves on SB and other fetal defects. But thank you, this seems to be a very well knowledged group. I look forward to sharing with you all...

Drew

Dodger67

07-09-2008, 05:22 PM

Welcome Drew

As you can see in a few other threads here, making an enormous effort to get an "accurate" diagnosis before birth is genrally pointless as nothing can be done about the condition before birth anyway. Also the location of the lesion is only a very approximate indicator of the range of possible effects. So IMHO its really not woth making a huge issue about it.

All this is just my personal opinion and I am known as the "cynical old guy" here. LOL!

amigirl

07-24-2008, 10:23 PM

Hello,

I'm sort of new here and I haven't introduced myself yet. I am dating and want to marry a terrific guy with SB. He's the best thing that ever happened to me and he seems to feel the same way about me!:o He is usually pretty open with me about his health issues and right now he is dealing with a serious pressure sore. I posted about it earlier under Adults and Pressure sore issues. Any advice on what I can do to be more supportive and helpful would be greatly appreciated.

Nice to meet you all!!

(Especially you Dodger. I like how you say how you feel so bluntly! :)

Justy Me

07-25-2008, 12:37 AM

Hey amigirl, nice to meet you too! Welcome, welcome WELCOME!!!! I think that pressure sores are the worst issue that us who have SB have to deal with. They just seem to be so unpredictable and once they appear it takes a toll on the person (emotionally and physically). Has he seen a specialist??? Also, where is it located? I had one a lil over two years ago, and it was around for two years before that. I was severely depressed and I thought life was over. I just could not deal with an existence that circled around trying to heal it with no end in sight. Anyway... My particular problem stemmed from an improper fit of my old wheelchair. For me, I found that as soon as I changed my pillow (the seat of my wheelchair) the sore went away fairly quickly. air pillows are a must. ( again my advice depends on where it is located but in my experience those things helped--oh and taking zinc helped too--he should try it!) I will pray for you guys and I hope I was able to help somehow!!

amigirl

07-25-2008, 01:43 AM

Thank you so much for your advice and support. His sore is on his hip/butt. He is seeing a wound care specialist but his Dr doesn't provide nutrition advice. I read that sores need lots of protien, Vit C, Zinc, and Iron to heal so (with his permission) I bought him a High Potnecy Vit & Min supplement as well as a high quality protien powder to make shakes with. I hope it makes a difference. He is skeptical about whether or not it will help. But I figure why not try it. He has to lay on his tummy for as long as he has the sore and being stuck at home really depresses him. I HATE to see him suffer. But I guess this is just another bump in life that we will deal with together. If he is scrupulous about his care and has the needed nutrition, how long should I expect the healing to take? The sore is larger than a quarter and open fairly deep, but it is not infected as of yet. Plus, he is using a wound vac, and may have a skin graft surgery soon. Again thanks.

angel

07-25-2008, 02:20 AM

I am in a similler situation, except it is my girlfreind with spina bifida and hydrocepalus. I feel exactly the same as you.

This is for both of the people who's significant others have SB. I have it and my husband does not. I think it is really great that you want to learn as much as you can.
When my husband and i were together (before we got married) i never really discussed my sb that much because it really is such a small part of who i am. When we decided to get married i felt there might be some things that needed to be discussed. I initiated the conversation and he knew just as much about SB as i did. I was shocked i asked him how he knew so much about it. He said I wanted to learn about it so i would know how long you would live (he didn't know before that my life expectancy was like everyone elses) He wanted to see how much time we had together. I will tell you right now that was the moment I KNEW i had found the right one for me.
I can only speak from personaly experience but when we first got married and he was there for every part of my day to day life he really tried to help me with everything. This totally annoyed the shit out of me!!!! I very nicely told him that i really need to do for myself everything i can. If i need your help with something i won't hesitate to ask for it. If i fall and i can't get up then pick me up but just back off a little. His heart was totally in the right place and it didn't take him long to understand and everything was fine. He still from time to time gets nervous when i am climbing on something to reach what i need and stuff like that but for the most part SB plays no role in our relationship. Just love eachother

Angel

Dodger67

07-25-2008, 06:27 AM

Hi Amigirl
Thanks for the compliment.
A few thoughts on pressure sore issues.
He needs to get a very good seat for his chair. I have a Jay2 Deep Contour and since I got it have not had any problems at all - not even a hint of redness! See www.sunrisemedical.com (http://www.sunrisemedical.com) to find your nearest dealer.
Lets hope the surgery works.
As soon as he is able to move, get a proper seat cushion - not the next week or even the next day - immediately!
Even the best cushion money can buy is no good if he does not keep monitoring his skin condition daily.

Dodger67

07-25-2008, 06:41 AM

Well said!:clap2:
The same advice applies to mothers as well as other relatives and friends!

We all love our mothers but some of them really do cause a lot of damage by creating dependency in their disabled child. (This applies to all kinds of disabilities, not only SB.)

As my brother often puts it: "Get your own beer! Are you paralysed or something?":Banane21:

amigirl

07-25-2008, 07:25 PM

Thanks Dodger! I will definitely suggest that he look into that cusion. He seems to be healing fairly well so far beacuse he's been staying off it. Thanks to everyone for their support! :)

Angel, I know exactly what you mean. My guy is so independent. Sometimes he gets offended if people try to help him without asking first. Or he feels that if they do ask they are somehow implying that he is incapable of doing it himself. I realize he is very capable, its something that attracted me to him initially. I have had to feel him out on what things he wants me to help with and what things he would rather do himself. I try not to get upset about it either way. Afterall, I think its great that he'd rather hold the door for me than have me hold it for him. He can treat me like a princess all he wants! <3

ollieholmes

07-28-2008, 11:39 AM

I agree totaly, i try to only help when she asks me for help.

jessiesmom12202

09-16-2008, 11:03 AM

I am 21 weeks prego..at 20 weeks i went in to the dr for an unscedual dr visit, while i was there the dr decided to do an unschedual ultrasound.... 30 minutes later after the Ultrasound i was told my unborn child has spina bifida....Help i am lost...:signs116::signs116:

bcain

09-17-2008, 03:10 AM

Hello everyone. :) I'm also very glad to find an active site for SB. I had not had much luck either finding a SB site.
My dd is 11mos old. She has a low L1,S3-4 myleominingocele, no shunt needed as yet. She is wonderfully fiesty and smart, very active too! We are bracing ourselves for the road ahead and hope it's not as rough as some. We have to cath q4-6hrs, and she's on a bowel schedule after every meal. She's doing very well. Thanks for your posts. l like to read everyone's stories.

rachiebaby

09-18-2008, 12:01 AM

I have to agree i do like this site already!!

I don't know much about cathing to be honest but i do know that when i tried it it really hurt!!! I do have sensation and always in a way thought the ones who couldn't feel it were so lucky. ( i look for the perks in every situation lol) I am sorry to hear about the trouble your son had. I didn't know you could create a false passage!!!

you don't have to cath? wow your lucky i've been cathing my whole life and sometimes it can get rather annoying especially when i have to wash it and there isn't a very good place to do it

nanna

10-01-2008, 07:06 PM

Hello Everyone, I am new to this site i have joined to learn more about SB and hope to learn how to support my family and others. I have just become a first time grandma to a beautiful boy with SB. It is early days yet so i am still a little uncertain about the full details of how he will be affected.

joybell322

10-01-2008, 07:59 PM

Hi! Welcome! You've picked a great site! I just recently joined and love it! One thing I will suggest if I may, is that you read some of the books listed on the home page of this site. I am reading Living with Spina Bifida now, and honestly wish I had known about it at Lizzie's birth. She is a beautiful 6-year-old with L4-6 Spina Bifida. Feel free to ask any questions you have. It's so much easier to deal with when you have someone who has already been through it to talk to! LOL!

Dodger67

10-01-2008, 09:03 PM

Welcome!
Please try to get at least one of your grandson's parents to also join us.
The "full details" you are waiting for usually take a number of years to become clear and even then they change as one ages.
In my own case I became a fulltime wheelchair user in my early teens as I had grown too heavy to continue walking effectively with braces and crutches. My urinary incontinence was only finally solved in my early 30s. I'm now almost 41 years old.

LisaJoy

10-02-2008, 02:58 AM

Sorry if my first reply went through before I intended it to! I've been lurking for about a week; thought I'd introduce myself. I'm 44; sb/lipomeningocele with split cord malformation and sacral agenesis. I've always had neurogenic bladder problems, but walked without aid until my last tethered cord surgery in 2002; now I have a right afo and one crutch. I swim several times a week and my hobbies are reading and church music (choir and handbells). And I'm a college history professor -- in the last few years, I've been doing research in disability history. I've enjoyed reading through the old posts and will try to keep up on a regular basis (although midterms are next week, so I'll have lots of tedious grading to do). Nice to meet everyone!

Barb

10-25-2008, 08:35 PM

I love history too. I never thought of disability history. That is really neat. I would love it if you shared some of your research with us.

sunyflowa katie

11-15-2008, 02:41 PM

hi im a mum to a 18 mth little girl who is funny beautiful and happy , she has sb had her op in june 3 days afte her first birthday and she can sit crawl cruise and not yet able to walk . her left leg is smaller than her right and also her left foot is too ,still waiting for tests on her bladder and bowels she has been measured for special made boots from from physiotherapist and a insole as her left foot seems to turn in and lean in to wards the floor so shes not very stable when she stands this is also cause ing her pain too . i only founf out she had sb when she was 5 months old when she got a uti and the docter was doing a check on her and found a tuff of skin on the bottom of her spine so they sent her for a ultrasound scan and she would not keep still and so she was sent for a mri scan and thats when they tld me that katie had sb also found out she had problems with her feet and her legs and that she had a enlarged bladder to id just like to hear from people or parents in the same condition as her and all the information on this because the docters and specilists dont explain very well either of wat help she needs or wat i need to do for her

LisaJoy

11-15-2008, 04:09 PM

Hi, Hannah -- welcome to the site. I have a closed form of SB, too, like your daughter. There are several parents with young children who post to the site. You might want to go back to the "New Member" main page and start a new thread to introduce yourself -- otherwise you might not be found here in this spot.

Lisa

jefwan

11-25-2008, 10:53 PM

Hello Barb my name is jr. I have a beautiful lil girl who will be turning 6 this month. She is now in kinder. "full inclusion" she is the reason i've joined because my wife and i have so many questions. Our daughter is very bright and independent but there are a couple things we are not quite sure how to teach her. One of the main things is teaching her how "cath" herself. Any suggestions will be greatly appreciated. thank you
Hello jr,
I have an 11 year old with sb. She has been self cathing for a few years now. We helped her by giving her a mirror and an anatomy lesson, so she could get the catheter in the right place. We helped her whenever she needed it. We also sent her to Victory Junction, and a camp for special needs here in SC, called Burnt Gin. The other campers and the counselors gave her the confidence to keep trying, and one day she was able to do it herself. She gets high marks from her urologist every year at sb clinic because the ultrasound shows that she empties her bladder. Feel free to contact me here or off list if you'd like. It wasn't exactly easy to teach her, but we managed, and I'll give you any help I can.

Tanson

12-28-2008, 08:58 AM

Hi, my name is Tanya and I found this website looking for info on tethered spinal cord and sore bladder or abdomen area. I have SB and am having my 2nd detethering next Monday. I would love to read about other people's experiences of 2nd detethering (good or bad). I am 30yrs old and use a chair full-time and have done so since I was about 21. I have had dreadful pain in my lower back and down my left leg for about 2 months now, this pain in my bladder is new though and is scaring me a bit. I am constantly having to go to the toilet and am not sleeping properly. Does anyone know if the op will fix this as it is upsetting me more now than the back pain. Sorry to sound so whingy and ask so many questions but I need someone to tell me (if possible) that the surgery will fix it.

Thanks again and Happy New Year to you all.

Love

Tanya

LisaJoy

12-30-2008, 09:57 PM

Hi, Tanya!

I've had two detetherings also, but I'm not a wheelchair user, so I'm not sure how applicable my experience is to yours.

My second detethering was specifically done to preserve bladder & bowel function, which took a sudden nosedive. It worked (but I lost function in my right foot and had to start wearing an AFO and using a crutch for the first time). The surgery was 6 years ago; I was 38.

It sounds like you might be having bladder spasms, which are a neurological sign. Have you told your doc about it? They might want to check for infection before the surgery. If it is spasms, the surgery might help.

Also, a lot of people take oxybutinin for that (that's the generic name; it is marketed under Ditropan in the US). I don't have spasms, but take it to relax the bladder and stop the constant urges to go. It has improved the quality of my life a LOT. I used to have to get up 3 or 4 times a night; now I sleep straight through for 7 hours. But a few people on this forum haven't had luck with it. There's a discussion thread about it -- I think it is under the "children" section.

You might want to start a new thread on this topic under "General SB" -- it will attract more attention that way and you might get more feedback. I've been catching up on the forum for a couple of days and only just now spotted this post because it is kind of buried!

Good luck with the surgery. Tell your doc about the bladder pain and ask the urologist about oxybutinin (it comes in "extended release" so you only take it once a day).

Keep us posted!

Lisa

Godmother

01-06-2009, 01:41 AM

Hello All! I'm the Godmother of an incredible 4 year old who was part of the MOMS study. He is doing great, but of course I have concerns about him in the future. I want to know all I can about SB, so I can continue to support my beautiful boy.

Monique

01-06-2009, 07:44 AM

rachiebaby

01-06-2009, 01:24 PM

LisaJoy

01-06-2009, 03:46 PM

Hi! My name is Monique & I am 34 yrs. old. I am happily married with 2 kids (we chose to adopt) and I'm a stay-at-home mom. I am able to ambulate pretty well, my SB is not that noticeable, except that I do have somewhat of a limp when I walk. Like many people w/ SB, I have had a lot of surgeries, mainly for bladder incontinence. Right now, I'm frustrated! I've had many collagen & coaptite bladder neck injections (most recent one was in Nov). The last one didn't seem to work that well, as I am still leaking (cath every 3--4 hours). I go back for a check-up in a few weeks. But I'm concerned thatI may have reached the point where the injections are no longer going to be effective for me. (Something my urologist had warned me about--said one day there would come a point where we will have to look at other options). I've already had the bladder sling procedure twice and a bladder augmentation. Is anyone else having these issues?? Thanks =) Monique

Hi, Monique! You didn't mention whether you take Ditropan or Detrol -- I'm not sure about Detrol, but I take Ditropan XL to control leakage between caths. Several othhers on this site do as well, although some have tried it without much success. I think a few also use Detrol. I'm not really familiar with the injection procedures you mention, but I know that there is currently a clinical trial studying botulism injections, but I don't know whether it is expected to be an option for people with neurogenic bladder. Something to ask about, though.

Missholly2007

01-22-2009, 02:25 AM

Hi my name is Holly,
I am 21 years old with a baby boy on the way.:signs116: Im really scared because this child was diagnosed with spina bifida. Whats the life expctancy on an infant having it? I suppose I have so many questions that im almost wondering what I have got myself into. I don't regret in any way shape or form to continue my pregnancy im just not so sure that I know what Im getting myself into and Im very fearful of what is about to come my way.

dahliafaolan

01-22-2009, 03:10 AM

Hi Holly! My name is Ashley and I'm 23 with lipomyelomeningocele. Welcome to this site. Feel free to look around all over the site. I'm sure you'll find a lot of answers just looking around. But as for the life expectancy of your child, let me put your mind to rest. The life expectancy of a Spina Bifida child, if properly cared for, is just the same as the life expectancy of a child without Spina Bifida. If you have any questions, please feel free to leave me a private message or start up a thread. There are plenty of people here that would be more than happy to answer your questions!

Monique

01-22-2009, 06:11 AM

hi Holly! Children born w/ SB have the same life expectancy as anyone else. When is your baby due??

Dodger67

01-22-2009, 08:50 AM

Hi Holly
Welcome:happy065:
I'm Roger, I have myelomeningocele and I'm 41 years old.
Life expectancy really is not an issue if the various medical issues are taken care of, so don't worry about it.
Take some time to read through the existing posts - many of your questions and concerns have already been addressed. Feel free to add to any thread or to start a new one anytime.
We are here to help you, please use us.

Sheena51985

01-22-2009, 11:32 AM

Hi Holly!! Welcome to the site!! I'm Sheena, 23 years old, with Spina Bifida, Myelomeningocele at L-5 level and Hydrocephalus..

as the others have said, as long as your son's issues are properly cared for, he should live as long as anyone else in the world..

2nd-if you ever have any questions, feel free to look around or to ask one of us..I'm sure one of us can come up with an answer for you!! good luck and stay strong!!

~Sheena

carrieandcam

01-30-2009, 01:28 AM

My son Cameron is 8 yrs. old and he is so sweet and smart, and funny.
He wasn't diagnosed until he was 5 yrs. old, and he has had some difficulties,and yes it can be stressful, but I wouldn't trade him for anything in this world!
You will love your baby and you will be a strong , loving mother for him.
God has chosen you to be his mother.
Carrie

GoldenMonkey

02-04-2009, 05:52 PM

Hi everyone,
I'm new here. I stumbled onto this site when I was researching the new lumbar to sacral nerve rerouting surgery that Detroit Beaumont hospital is involved in. Our son ...the "golden monkey" is 9 and was born with a lypomyelomeningocele. He had surgery 5 times in his first year to correct this as well as a couple dermal sinuses and a skin tag/tail. He is doing well....he ambulates / runs well. We deal more with incontinence issues and are always looking for new stuff. I am a RN. I think the medical research in this area is changing so quickly it's amazing. We were signed up for the surgery mentioned above but are no longer qualified as our son has grade 2 reflux on one ureter. It's interesting to follow ! Has anyone else got any thoughts on this surgery ?

LisaJoy

02-04-2009, 07:40 PM

Welcome aboard! I think there are some threads under "Xiou procedure" or something like that -- is this the surgery that comes out of China? I haven't seen anyone post who has had the surgery or knows someone who has. The last mention I saw was that they were not enrolling new patients pending funding.

Please share with us what you know -- but start a new thread under the General Spina BIfida or Children thread. People will be more likely to spot it there.

Glad to have you -- I also have lipomyelomeningocele (I'm 44 and a college history professor). There are several others on this forum as well (they or their children have it).

Lisa

Tzaphiel

02-13-2009, 08:19 AM

Hi ya'll. I joined this site to learn more about SB. My boyfriend of about a year has SB and Hydrocephalus. I love him deeply and dearly and just getting to talk to him makes my day brighter. The only thing is he doesn't talk about it at all and I've been nervous about asking, as I don't know how he'd react. We've had some problems and I really think, like one of the other posters who's SO has SB said, that he kind of closes himself off and pushes me away because of the SB. I thought if I could learn more it might help him open up about it. Any suggestions about bringing the subject up, or a way to get him to open up would be greatly appreciated! I lurked as a guest for a couple of days reading up. The thread that got me here was the one about life expectancy. That one was really a relief!

Dodger67

02-13-2009, 10:19 AM

Welcome!
I'm one of the older members here - so far "life expectancy" has been good to me!
Maybe telling him about this site would help your relationship - naturally he is welcome to join us.

Tzaphiel

02-13-2009, 10:49 AM

I think I will... I'm not sure of the reaction I'll get, he's never really brought up the subject himself. He told me he had SB but what little I know of it I pretty much had to research myself. I hope he joins this place.

monica

02-13-2009, 03:27 PM

Hi Holly, My name is Monica. I am 33 years old and I have a son that is 22 months old with Myelomeningocele SB L5-S1 and Hydrocephalus. It seems like just yesterday that I was in your shoes and the fear of the unknown is huge. Do you know yet what kind of SB your son has? I do know that my son is soooooooooo wonderful and such a joy to have in my life. Yes there are things that he cannot do, but I never loose hope on him someday being able to do most all things in ex: walk. If you have any questions and you think that I can be of help... please do not hesitate to ask. :*)

NeverGiveUp

02-28-2009, 01:21 AM

Saying hi from the great NE, 34YR old fem with SB Mylo from birth

Gymp

02-28-2009, 02:01 AM

Welcome to you NeverGiveUp...I'm Gymp a 52 yr old with SB?,feel free to join in anywhere,we're an interesting bunch.

Gymp

LisaJoy

02-28-2009, 02:34 AM

Welcome aboard, NeverGiveUp. I'm Lisa -- 44, lipomyelomeningocele, etc., 1 brace/crutch, college history professor.

Dodger67

02-28-2009, 04:23 AM

Welcome!
Where is "the great NE"?
This is a global forum, you need to be a lot more specific/explicit about geography. LOL!

angel

02-28-2009, 11:40 AM

Welcome to the group I am 32 (almost) from PA with SB myleo at level L4/L5. Feel free to jump right in.

Angel

Paula

03-05-2009, 05:38 PM

hi Paula here I am new 40 and a mother of 3 beautiful children. I ve written a few posts already but I am not sure if I ve been doing it right a messages havent gone through?? I have SBO + scoliosis. I was told in casual conversation during a physio appointment by the therapists that I have the above, unknown to me?? apparently was detected in x-ray I had for pnemonia bout 7 years ago. It may sound odd but I ve never really questioned it, I ve known I have SB for about 5-6 years now, I ve not seen doctors regarding the SB but I ve had to have sessions with the physio on a nd off throughout the years. I ve got many questions but I really should book appointment with own G.P. My back constantly hurts my limbs, hips, legs shoulders my head my ears. I have a pad on lower back with dimples, which I feel is getting bigger??? can anyone help please.

Paula

LisaJoy

03-05-2009, 05:59 PM

Hi, Paula! Welcome to the forum.

It sounds like you might have a lipoma or lipomyelomeningocele, which is a "closed" ("occult") form of spina bifida. I think it is possible for lipomas to get larger, since they are basically deposits of fat. It is also possible that your spinal cord is "tethered" to the lipoma. Doesn't necessarily mean anything needs to be done, but it is something you should investigate. THe other thing you should look into is whether you have Chiari malformation -- it is sometimes associated with tethered cord, and is where part of the brain is pulled down into the spinal canal. The only reason I mention it is because you mention pain in the lower part of the back of your head. (This is nothing to panic about, even though it sounds really horrible).

Have you consulted with a neurosurgeon? You really should, and you should have an MRI or CT of your head and spine.

Do you have any dysfunction of bladder or bowel? If so, it is important that you not be shy about consulting a urologist. Most people with various forms of sb have some degree of bladder & bowel problems.

You shouldn't panic about any of this -- it is not an emergency. But since you are having symptoms, you should really try to get some answers, and the place to start is a neurosurgeon (if you can find one who treats both adults and children, they will be more knowledgeable about sb).

Dodger67

03-05-2009, 07:02 PM

Hello Paula
Welcome! :happy065:
Lisa's advice is excellent. :goodpost:
If you tell us where you live someone might be able to recommend an experienced neurosurgeon or a good clinic or hospital near you.

carrieandcam

03-05-2009, 07:26 PM

Welcome to our group. I agree with LisaJoy. Although, I think you should kinda make it a top priority to see a Neurologist ASAP.
How old are you kids? Mine are 15 yr. old Katie, and 8 yr. old Cameron ( who has SB and tethered cord)

NêêNêê

03-06-2009, 02:40 AM

Hello,

I'm NeeNee, very new to the site and very new to the Spina Bifida world (so to speak). I met a wonderful young man about a year ago (will be 1 year March 8th, YAY!) with SB. At first I wasn't sure I could handle all the issues he has to deal with but it turns out I was scared and nervous for absolutely nothing. We have been in a relationship for awhile, what I love the most about him is his ability to make me laugh so hard I snort *blush*. After I met him I spent some time researching SB so I had a better understanding of it but I still have so much to learn and understand which is why I am glad I found this forum. I look forward to reading everyones posts and posting as well.

Nice to meet you all!

NêêNêê

LisaJoy

03-06-2009, 04:23 AM

Welcome aboard! Invite your guy to join us, if he would like to!

NêêNêê

03-06-2009, 04:44 AM

Thank you! Yes, I told him about it and he is going to join too :happy065:

Dodger67

03-06-2009, 05:33 AM

Welcome NeeNee!
If you're interested, we have a few conversations about issues around relationships, sex and sexuality in the Adults section. If you're comfortable with the topic, I believe it could be very useful to have a (non-disabled) partner's point of view. Just off the top of my head I think you are the first female partner of a male with SB to join us.

NêêNêê

03-06-2009, 08:10 AM

Thank you for the welcome! And yes I am quite comfortable with those topics and I have spent some time reading through some of the threads already :P I would be more than happy to give my point of view as well as take in everyone elses experiences and advice. Some I have found very helpful already :clap2:

I'm really happy I found this forum, you guys are awesome! I really find it helpful how open and honest everyone is.

Holly

03-06-2009, 12:47 PM

I think it is wonderful that you want to learn all that you can. Our members are awesome and I am sure will help anyway they can.

carrieandcam

03-06-2009, 05:53 PM

NeeNee,
Welcome!
I just wanted to thank you for being such a open-minded,non-judgemental, caring, loving person.
I have an 8 yr. old son with SB and as he gets older and more interested in girls, I sometimes worry how he will find a girlfriend ( especially in High school) who will be accepting of his disability. Mainly his bowel and bladder incontinence.
The love you feel and show your boyfriend makes me feel like that aspect of Camerons life will be OK after all..... thank you for your encouragement!
Carrie

NêêNêê

03-06-2009, 10:22 PM

Awwww thank you Carrie. When my bf first started telling me about SB and all that it entails he wasn't ready to share his bowel and bladder problems, he still has trouble dealing with that aspect. I was completely oblivious to the fact that people with SB had these problems with their bladder and bowel movements until I did some research on it myself. It was obvious that it bothered him so I said nothin about knowing that it was probably an issue for him, I figured when he is ready and comfortable he will tell me himself. The only thing I could do was make him feel as comfortable as I could. It was still very difficult for him to tell me but as I explained to him, why would I judge you or anyone on something they have no control over. It isn't like he is just being lazy and refusing to get up and go to the bathroom when he needs to and therefore needs to wear adult underwear (we don't use the term diapers and they are adult underwear garments). Accidents happen, hell, I've been known to laugh a little too hard myself with a full bladder! lol

It is difficult for anyone to find love and happiness in the world, for some it is just a bit harder, doesn't mean it won't happen. There are many open-minded, understanding women and men out there with lots of love to give and I am sure your son will find that special woman in High School or in life in general who will love him unconditionally.

Thank you to everyone for the warm welcome. :happy065:

jcinmo

03-16-2009, 02:51 AM

Hi...

I just want to say I am glad that I found a group that seems like I can fit right into. I do not know of any one in my local community that is living with SB. I work M-F, and am busy with seeing my only child graduate and go off to college this Fall.

Dodger67

03-16-2009, 05:44 AM

Welcome :happy065:
Please give us the basics of your/your child's SB (its not even clear who has it).

jcinmo

03-17-2009, 03:42 AM

I was born in the late 50's and they didn't think I would survive. I am a miracle and miracles still happen today.

jcinmo

03-17-2009, 03:46 AM

Hi all; Just wanted to say that I am the one with SB; not my son. I'd love to here from more of you.

kellymumof4

03-26-2009, 08:45 AM

this website is so useful and has helped me alot with questions regarding my baby that was born with sb

bea22

03-27-2009, 04:46 AM

Hello everyone, my name is avy a mother of a 3 years old girl. Who was diagnose when she is still inside my tummy at 7mos. When i was having my ultrasound that time, they've already seen that her head had a dilated lateral ventricles and she had a mass on her lower back. When the delivery time comes it was cs.. at the 3rd day of her life, she had her first operation which the nuerosurgeon repaired and closed lower back level 1-3 because it was not fully develop. And the her 3rd weeks, next operation was her head which they put a shunt on it connecting to her stomach.. After those traumatic experience, we never stop having a regular check ups with the doctors, because we are now handling her nuerogenic bladder due to consistent uti's. I'm always praying to God for her to stay healthy and have a normal living. I hope that this site will give me more advices and learn more thru other experiences. God bless us all.

LisaJoy

03-27-2009, 03:42 PM

Welcome, Avy!

Barb

03-27-2009, 06:07 PM

Welcome to all of the new users!

canadian mom

04-30-2009, 05:46 AM

Hello,

I have a 5 and a half year old daughter who has myelomeningocele and hydrocephalus. My daughter is in a wheelchair and has no movement from her waist down. I have been looking for information and for other parents to talk to for a long time, so I was very excited to see this site!

My most pressing question is about bowel programs. Where do I go for ideas regarding that?

Thank you! :signs116:

Dodger67

04-30-2009, 06:49 AM

Hi and welcome!
:happy065:
You forgot to tell us your name and also your daughter's.

There is a lot of discussion of bowel control in the children's section, you'll get good information there.

LisaJoy

04-30-2009, 07:27 PM

Welcome aboard Canadian mom!

canadian mom

05-01-2009, 04:10 AM

Thank you for the welcomes, and sorry for not properly introducing myself!! (blush!) My name is Marsha, and my 5 1/2 year daughters name is Jenna.

I am SOOO glad that I found this site!! I am vice president of the local Spina Bifida Association where I live, but my daughter is one of the older children to be involved, so there isn't a lot of experienced parents or adults with SB to share info.

M.

elaineg

07-17-2009, 05:19 PM

Hello All!

My name is Elaine and I live in Alberta, Canada. My 21-year old son Daryl has Spina Bifida. Just thought I'd join the forum to look around and see if there's anything new I can learn from other's experiences. Daryl hasn't had a surgery or any other issues for about three years now so i haven't really had to keep up on things. I have some thoughts and questions so I thought I'd have a look around the forum and jump in on some of the threads.

So far I like what I see on this site and plan on checking back often!

LisaJoy

07-17-2009, 05:58 PM

Welcome, Elaine! And invite Daryl to join us.

Dodger67

07-18-2009, 08:50 AM

Hi Elaine

Yes, please ask Darryl to come too.

kcncmom

07-20-2009, 09:20 PM

Hi, I just went to the dr with back pain and after lots of test discovered that I have Spina Bifida Occulta (L5). Im starting physical therapy and am on medication but its so painful right now. Who knew that ive had this all my life and thats why my back hurts so often and probably why labor was all back labor and painful. Im interested in finding out whats next, they say this is the least of the three but what does that mean for me at 39, will it stay like this when im older?

LisaJoy

07-21-2009, 12:34 AM

Hi! Welcome to the site. I'm assuming that by "least of the three" they mean myelomeningocele, meningocele, and sbo. Did you have an MRI and did they rule out tethered spinal cord? Symptomatic sbo often has some other tethering lesion with it. Do you have back pain alone or do you also have bladder and bowel issues or problems with your feet?

No one can say what the future will hold -- if there are no tethering lesions, you may not ever have a problem beyond the pain you currently experience.

I'll be interested to know if the PT helps with sbo pain.

Read around the forum and ask questions or jump in wherever you like!

garry

08-23-2009, 05:19 PM

hello barb,
i am 24 male from india.myelomeningocele l4-l5. i didnt use to think much about spina bifida until i started developing bad back ache from past 2 years. also i feared diagonosing it, because until my second surgery , a laminectomy at l4, i could walk with my clubbed feet. but the surgery went a little wrong(as doctors reading MRI say) and i always feared having another. but now i had to know about my pathology in full detail as i ultimately developed a neurogenic flaccid bladder from compressed nerve due to scar tissue. i was totally hopeless and the thought of getting progressive degeneration made me psycho. In india, medical help is not so good to average person. Doctors treat you as another biological body for experimentation. also my condition is like that i have to do a lots of struggle to earn and have a family in this era of global meltdown. i was always in dilemma to marry or not? i never planned a long future. i always worked hard to keep living. But your forum was a big support. see, the way we people can encourage each other, no other doctor or person with different ailment can. i can explain to nobody in my family, the pain i get from nerve compression. its irritating. i also have to be very choosy for my food habits. all this doesnt get to my family's head. i just wanna thank you for starting this hopeful forum. may God bless ur children. see barb , tell your child about me and encourage him to never give up. and dont ever make him feel bored about studies as it will help him acquire a good social status. I myself completed my engineering in electronics just a few months back, although it was a tough journey without the support of parents and i lost my bladder in this struggle . i couldnt get the medical help in time due to tough schedule of college and ignorant attitude of my family. once again thanks. keep in touch. have a lovely day........garry.

LisaJoy

08-23-2009, 11:54 PM

Garry,
Thank you for sharing your story. You have already overcome some tough obstacles. I hope that your education opens some doors to a better future for you, and perhaps better medical care.
Lisa

nolda

08-24-2009, 03:58 AM

Hiii Garry,

Nice to hear somebody sharing from India. I am also an Indian, and my daughter is an myelomeningocele

garry

08-24-2009, 10:22 AM

hello nolda,
where do u live in india? whats ur daughter's age. may i help u anyway? i have explored many aspects of this ailment in past 2 months. it was my full time business . i think i can and i should help u being from the same country.

nolda

08-28-2009, 04:03 AM

Thanks Garry for your helping hand. My daughter is 27 and is in her final year BA . She has taken English Literature. You have beautiful thought of helping. Thanks once again. I have been educating myself regarding this defect ever since my daughter is born. The expenditure of sb person in India is unbelievable. where shall they go to find peace of mind or a place to have a change in life?

KMkaggerud

08-31-2009, 06:55 PM

I used to be a teacher! Do you work for an early intervention program?

Barb, I am not in an early intervention program. I have primarily been working in preschool programs.

Kristin

LillyPie

09-03-2009, 11:34 PM

Hello to everyone! My daughter was born with myelomeningocele with shunted hydrocephalus. Her lesion is at the L4-L5 level. She is just about to turn 5 years old. She has had 1 shunt revision. She had hip displaysia that was corrected when she was 1. During the same surgery they trasferred tendants in her lower legs, because her orthopedic doctor was convinced that she would walk. If the tendants were not transferred then she would walk on her heels. She first walked with a walker and is now walking independently, although she has many falls. Everything has been well. SHe is on a profalactic antibiotic called furadantin to keep UTI's away. She has had to many to count. I cath her daily and I am attempting a bowel program.
I have so many unanswered questions... My most current concern is pre-school. There is a prgram in my area called Child Find through the public schools and she has been accepted by I am unsure... I guess I am afraid that they will not care for her while she is there the way I do. She does fall a lot and they have mentioned the possibilty of her needing to wear a helmet during recess. Can someone give any info on SB children starting school?

LisaJoy

09-03-2009, 11:48 PM

Sorry, I can't speak to your question, but I just wanted to be the first to welcome you aboard! You might get overlooked in this spot, so you might try starting a new thread with your question under Children, if you haven't already done so.

joybell322

09-04-2009, 01:42 AM

Hi! My Lizzie is L4-L5 & S1 - she goes to 2nd grade & falls alot, but never wants help getting up! Is your daughter in braces? Lizzie wears KAFO's. She does fine at recess although all the supervisors stay pretty nervous, because she's active. She does not wear a helmet. I can't imagine making her wear one. She has enough differences with everything else, but if YOU feel your daughter needs one, then I would say definitely do it & help her be positive about it! The one thing I am certain of with my daughter is that I know a heaping lot more that anyone at her school about her!

angel

09-04-2009, 02:30 AM

Hi welcome to the group.

I had a "crash helmet" when I was little before I started school. I was in full body braces (we are talking heavy metal and leather these were the old style) but by the time I went to school I didn't wear one. I would have taken it off myself had my mom put one on me. I fell all the time but It is how I learned to get around better. I learned to get anywhere I wanted with my crutches but it was by pure trial and error.
As far as her care in my experience the truth is that no one ever takes care of your child as good as you do. God knows a lot of us have had issues with things at school but you work them out as they come along. School is where they learn to be more independent and it is an important step (in my opnion) for a child to take.
I did just fine, many others here did just fine. By the time I hit second grade I could do pretty much for myself which is something you want to teach them early on and continue for the benifit of your child.
I am 32 years old and have SB Myleo level L4/L5. You would be really surprised at how tough we actually are! I have fallen more times, off of about anything you could imagine. I climbed trees (my mom wouldn't watch) I played with the other kids, I did everything I could possibly do and tried some things some would think I couldn't and could keep up with the best of them.

Hope you enjoy the group feel free to jump right!

Angel

Dodger67

09-04-2009, 05:35 AM

Welcome! :happy065:
All I want to add is that you should get her to cath herself asap. Apart from avoiding the uti risk from having a stranger handling her catheter, it is also an independence and self esteem issue.

LillyPie

09-04-2009, 07:25 PM

When I cath her she asks questions and I've showed her where to put it.. i think she at the point where she wants to but I'm not sure if she will know how. Do you really think that at her age she will be able to?

LillyPie

09-04-2009, 07:29 PM

Also... concerning the helmet I was against it at first because I was afraid that other kids would make fun of her, this is going to be her first experience at school and I really want it to be positive. She has fallen before and scratched up her face real bad... so Im still kinda debating that one.. I want her to be safe, but I also want her to be emotionally safe as well.

Dodger67

09-04-2009, 08:17 PM

She's asking, shes ready to learn. Teach her now while her interest is peaking.
This thread http://www.spinabifidaconnection.com/showthread.php?t=1144 is about teaching a girl to do it.

(Boys have it easy, I only had to be shown once.)

Dodger67

09-04-2009, 08:24 PM

I'm on the side of no helmet.
She's already the class gimp - don't make her be the total freak!
The psycological scars that causes are much worse than the odd scratch or bruise.
If she really has frequent serious falls she needs to be using a more stable walker or a wheelchair anyway.

LillyPie

09-07-2009, 02:52 AM

Um... I know this sounds dumb but, how do I know if she needs assistance for walking? I know her legs get tired after walking 400-500 ft... thats when she falls and sometimes her legs are so tired she wont get up. She'll just sit there. So a lot of times a just carry her. Especially now that she is getting heavier. Its like the bigger she gets the less her legs can handle. Should I let her get as far as she can to keep up with strengthening her legs or should I think about getting her a wheel chair for long distaces (we went to disneyland and used the stroller but she looks huge in it) or a cane or something like that.. I have a walker she used years ago but it probably needs some adjusting.

Summer25

09-07-2009, 02:34 PM

Bigwilli

09-09-2009, 02:15 PM

Hey Barb,

Just a quick thank you! This was the very first site that gave me hope and got me educated to my daughters condition. I visit frequesntly and hopefully can pass on the knowledge I have learned from here. The overiding feeling is that there is so little information out there that can help parents on a personal level. Prior to this we only had doctors to rely on and they are somewhat pessimistic.

Again, thanks and keep up the great work!

Barb

09-10-2009, 01:26 PM

Thanks BigWilli!

Lilly---Carter used a wheelchair in Kindergarten because we found it to be easier socially then being the 'kid who walks funny' plus he could keep up with the other kids better.

One of my favorite memories was one day Carter wanted some scissors across the room and he decided to just walk over and get them, one of the kids fell to the floor and yelled that he was healed!

We had a similar situation a few years later when I was grading papers in my classroom and my two boys were playing afterschool in the computer pod. I guess they decided to goof off and chase each other. One of the other teachers about passed out seeing Carter running after his brother. No one realized he could walk.

He just felt safer in a chair with all the commotion of a classroom. Is that something you could consider?

LillyPie

09-13-2009, 06:20 PM

Its something I am definately thinking about right now. I am going to do some research on the web today to find something. Only for long distances though.. or whatever she wants when we actually get one. Any suggestions on chairs for that purpose?

Erika G.

10-14-2009, 03:00 AM

Hello,

My name is Erika G. I have a 14month old boy. He was born with Spina Bifida. We have been blessed that his only surgery has been the clousure of his opening at birth. He needs catherer daily, takes medicine, is now crawling!, and our neurosurgeon, yesterday told us that his head is growing fast, and the MRI showed a significant amount of water in his head. The amazing thing is that he does not show symptoms of the water affecting him. The eye specialist told us there is no pressure affecting his eyes, so the Dr. can't tell us if putting a shunt is really necessary at this point. He said there are lots of pros and cons either way. He left the decision to us, can you imagine, We decided to have him closely monitor our son. He will get another MRI in 2 months and we will see then, how much water there is.

That's where we are, it has been hard taking it all in-all the Dr's appts. and news, but I would do it over, and over. He is my adorable little boy, who makes my life so much richer and blessed.

Dodger67

10-14-2009, 06:59 AM

Hi Erika
Welcome! :happy065:

From what I've gathered over a lifetime - and here on this forum - of all the issues that come with parenting a child with SB, its the "wait and see" that sucks the most!

GODS SON

11-04-2009, 03:13 AM

GODS SON

11-04-2009, 03:19 AM

KMkaggerud Sorry I did not specify but my post was directed to u ...

KMkaggerud

11-10-2009, 09:09 PM

It felt good to read your introduction.You and are almost age mates .I am 38 living with spnal bifida . I am new to this forum and it feels good to know that i am not alone with this condition . I am hungry for informaton to deal with this condition and make my life easier and as normal as possible .I hope u and i can exchange valuable information .

Gods Son, I would be happy to exchange valuable information with you. Don't worry about not being specific about that your post was directed to me. If you don't mind me asking but were you diagnosised as a child or as an adult with Spina Bifida? Do you use crutches or a wheelchair to get around? I have other questions but will wait to ask you more later. Have a great day. Kristin

peg leg

11-18-2009, 07:30 PM

Good afternoon all. I'm Lisa, 38 year old, living in Mobile, AL.
[SB (myelomeningocele) L4-5, BKA, ambulatory with prosthesis, continent urostomy] What an amazing find! I had no idea this site existed!

Lifeisgood

11-18-2009, 11:14 PM

Welcome to the gang Peg! You're right, it is an amazing find. I have found this site to be super helpful and encouraging. Feel free to jump right in!

Dodger67

11-19-2009, 04:40 AM

Welcome Lisa! :happy065:
Please join the Adults usergroup.
I have a couple of questions:
What is BKA?
What type of urostomy do you have?
I'm Roger, 41 (just a few days left to 42!), South African, wannabe high school IT teacher. Myelo at L3, wheelchair user, Mitrofanoff stoma.

LisaJoy

11-19-2009, 01:02 PM

Hi, Lisa! I'm Lisa, too. 45, sbo w/lipomyelomeningocele, split cord malformation, sacral agenesis, neurogenic bladder. I wear an AFO on my right leg and walk with one crutch, self-catheterize. I teach history at the college level. I'm just up the road a bit in the Nashville area.

Welcome to the group! You'll enjoy it.

Lifeisgood

11-20-2009, 02:25 AM

I believe BKA is below the knee amputation.

Gymp

11-20-2009, 03:50 PM

Hi Lisa,welcome to the board...

Gymp

delanie

01-07-2010, 03:23 PM

My name is Delanie and I live in the HoustonTx-area. I am 27 and my husband is 22. This is our first child together but I have a previous 5yo girl from a previous relationship. We just found out yesterday that our lil girl has open spina bifida in the lower section and she had a lemon-shaped head. We are scared because financially we can afford to have a normal baby and pay those daycare needs and so forth but never imagined that we would have a child with special needs. We do not know our plans as of yet but we are waiting on the aminiocentesis FISH results to tell us if a chromosomal defect has caused this to happen. We are scared and do not knwo where to go and haven't let our families know.

LisaJoy

01-07-2010, 06:32 PM

Hi, Delanie! You've come to the right place for support.

First of all, let me reassure you -- sb is not caused by a chromosomal defect; they do additional testing because babies with sb are very slightly more likely to have additional issuess than babies without sb. It is very very likely that your baby has no chromosomal defects whatsoever.

Also, your baby's head is NOT shaped like a lemon. The "lemon sign" is a marker of sb on ultrasound. It is an extremely slight deviation from the normal skull shape at 20 weeks and always disappears by birth. There's another sign called the "banana sign". Let me reiterate -- your baby will not be born with a fruit-shaped head! Medical personnel scare parents to death throwing around these terms without explanation.

A baby born with disabilities usually qualifies for all kinds of state & federally funded services, including health insurance, therapy, early intervention, etc. Financial pressures should NEVER be a reason for terminating a baby with sb. There will be challenges and red tape, but a good hospital social worker can help you navigate the system. Some services have income requirements, but often income requirements are waived for babies with disability.

Most children with sb have normal intelligence, can achieve independent mobility (sometimes with no assistance, sometimes with walking aids or wheelchairs), and can achieve social continence (meaning they can manage their bladder and bowel issues, even if they can't "go" in the normal way). Children with sb have great potential! Just look at the pictures on this site. Most of us with sb have faced challenges, but our lives are definitely worth living!

I'm sad to say this, but ob/gyns, maternal-fetal medicine specialists, and perinatologists tend to be ruthlessly and unwarrantedly pessimisstic about sb. You definitely should not make any decisions about discontinuing your pregnancy before talking to a pediatric neurosurgeon who specializes in the treatment of spina bifida. Tell your ob/gyn that you want a referral to such a person immediately for a consultation.

Read through this forum, especially the "recently diagnosed" section. Ask whatever questions you want -- don't worry that someone might have asked them before and remember that there are NO dumb questions!

There are lots of parents on this site, as well as people like me who have sb (in all its varieties). We are here to help!

LisaJoy

01-07-2010, 06:34 PM

I think we have some other Houstonites on here -- they may have suggestions for you.

You should also look into the Shriners Hospital in Galveston -- it would be a good place to visit, see a pediatric neurosurgeon, and get a sense for the potential of your baby.

angel

01-07-2010, 08:17 PM

Hi

I just want to welcome you to the group. As Lisa stated so well a lot of these terms are just that terms. They are not to be taken literally, although it would help parents who are already terrified enough if they explained them.
I do hope you take the time to post some of your questions on here. You will get answers from all sides of this issue. You will get support from the parents who have been exactly where you are now. You will also get support from those of us who have lived with SB and done very well with it.

Angel

delanie

01-07-2010, 08:50 PM

Thank you everyone.

Like I said, I am depressed and to the point where I don't know if I can handle this. I have been in my bed since yesterday after the aminiocentesis and been searching the internet to understand some of what it going on. My husband is trying to be supportive but in the end, I am the one with more burden as a mom. I also worry about how this will affect my 5yo. I don't want to make her feel like she is on a backburner either.

angel

01-07-2010, 08:58 PM

My suggestion to you is read all you can on this forum. Read the REAL stories of real families. You can scare yourself to death if you google any illness. This forum is a view of what really happens. Knowledge is power and whatever decisions you make just be informed not misinformed. I am positive that every mother on here will tell you they know EXACTLY where you are right now. They know how you feel, the fear, the worries about your other children.
start here this is the Recently Diagnosed section of our forum. You are not the only one.

http://spinabifidaconnection.com/forumdisplay.php?f=5

Hope this helps,
Angel

Lifeisgood

01-08-2010, 01:18 AM

Hi Delanie,
Welcome to the group. I do not know if I can think of anything better to say that what has already been said by many of the members who have responded to your posts already. I will tell you that this is the best site that I have found for people who have or love someone with SB and that is because it is so real. We share our challenges and our triumphs. We commiserate on the sad days and then we all cheer together when one of the little ones blows away everyones expectations.
I have Spina Bifida myself, so I can only imagine what you must be going through right now, but I also want you to know that having Spina Bifida is not as bad as many fear it will be. I think that doctors are obligated to tell you every teeny tiny possibility of what can be wrong as a result of SB and that can seem pretty bleak, however the "worst case scenarios" are actually on the rare side. Yes, we definitely have challenges and some times I get real bummed out about the symptoms of SB, however in many ways it has been a gift to me! Seriously! I see the world through a different lens because of my challenges. Because of having SB, I went into the medical / counseling field myself. It's given me drive and determination in life. Oh, and I gotta tell you, one of the best feelings in the world is to look at the faces on people when I do something that others think that I would not be able to do because of my disability. I love to prove people wrong!
Please ask lots of questions, share what is on your heart and read as much as you can on this forum. Oh and don't forget to look at the pictures too! We are here for you!

It's True Really

01-14-2010, 02:17 PM

Hi, I am 37 years old and I was born with Spina Bifida and Hydrocephulus

sheilasrite1

01-18-2010, 04:51 AM

Am new to this site. My daughter is 28 with Myelo and all the other tings that come along with it. Am looking forward to maybe learning some new things about care since things are changing with her as she grows older. She just got out the hospital today. One of her many stays throughout the years.
Sheila

Dodger67

01-18-2010, 07:20 AM

Hello Shiela
Welcome! :happy065:

Please invite your daughter to join us and also sign up to the Adults usergroup - you'll find it as an option on your "User CP" page.

matoro

02-13-2010, 01:18 AM

I'm 31 weeks, my little girl was diagnosed with SB at 24 weeks. I was feeling fine with every thing going on, I helped my husband understand everything happening at the time. I had worked with children with dissabilities for many years until I moved out of state. Yesterday however I fell apart. I did nothing but cry, the slightest thing would irritated me, I felt lost, afraid, like I had let my little girl down, powerless to make things right... I went on line and I found this forum. I read for hours and I was able to feel calm and hopeful again. Thank you.

Lifeisgood

02-13-2010, 01:21 AM

Welcome Matoro,
We are looking forward to getting to know you and hearing all of your updates. I am so glad you found us! Feel free to ask us just about ANYTHING!
Best wishes for the rest of your pregnancy and for being Mom to your new little one!
:)

LisaJoy

02-13-2010, 01:54 AM

Matoro -- you've come to the right place for support. We'll be with you all the way!

Dodger67

02-13-2010, 04:13 AM

Welcome! :happy065:

jellolegs23

02-13-2010, 05:10 AM

Hello Everyone! I'm 33 years old and live in Willimantic, CT. I have Spina Bifida and Hyrodocephalus. Also, I have some pressure sores and a heart murmur. I joined this site hoping to get some support. Willimantic is a very small town and I don't get good medical care. Also my financial situtation is not very good. I only have a part time job. I have a computer science degree and have not been ableto get a job for sevrel years.

I already know about Yale New Have hospital and in my opinion they are a bunch of assholes. I called them several times and they always tell me that they are not talking new patients.

Well, I have no idea what other hopsital in Connecticu has a clinic for people with SB. I have 3 pressure sores. Also, my PCP has just quit his job but he wasn't very good anyway. He put my on hypothryroid medication and I don't know why after many years of have a normal thyroid I now have problems.

Hopefully some here can help me.

Thanks:3a:

Harry

Hi,

I just looked on the Spina bifida Association website, they have all the SB clinics in the whole US posted on their site. I saw the clinic you mentioned and there was one other mentioned.

Connecticut Children’s Medical Center
282 Washington Street
Hartfort, CT 06106
Phone: 860-610-4200
Toll free 877-743-5516

I am not sure if they take adults and not sure how close to Hartfort you are but it might be worth looking into.

jellolegs23

02-13-2010, 05:27 AM

Hi everyone,

My name is Kelly, I am a 28 year old female with SB at the L4-L5 level and shunted Hydrocephalus. I also just recently graduated with a bachelors in Social Work. I moved out on my own in my own apartment a few months ago and I am currently looking for a job. It is proving to be difficult in this economy, so I am volunteering at a local hospital in the Trauma Unit to gain more experience in my field.

I joined this site to gain more knowledge about the current practices in SB treatment and how others deal with some of the issues associated with the disability. I also joined to maybe help others in similar circumstances and listen to others' concerns.

Lifeisgood

02-14-2010, 12:49 AM

Hi Kelly! good to know a little more about you! I hope this site is a good resource for you! What part of the country are you from?

jellolegs23

02-14-2010, 02:05 AM

Hi,

Thanks for the welcome! I am from the southern part of Wisconsin.

Craig

03-01-2010, 01:57 AM

Amigirl,
I recently had a very small pressure sore -- small only because I caught it in time. I was able to get rid if it by laying on my side, with the exception of being at work, and taking zinc. It cleared up quickly. I like your advise on having an air pillow. I need to get a new pillow and will look into that type.
Thanks,
Craig

caseyminer

03-07-2010, 01:25 AM

hello everyone my name is Casey i am a 35 year old male with SB i have a 20 month old baby boy born typical. I am from central Ohio I am trying to find a specialist who deal with SB I am beginning to have more issues with pain and immobility. wondering if anyone knows of a GREAT doctor in Ohio that I could possibly see for my problems dealing with my SB. Thanks for any input.
Casey

Ziggy

03-07-2010, 03:23 AM

Welcome Casey! I sent you a PM.

haydenm

03-08-2010, 01:24 AM

Hello peoples of the forum!!!! My name is Hayden, I am 25 years old, and for all 25 of them, I have been struggling to come to terms with my lipomeningocele (i'm getting pretty good at spelling it so far!!!). It's been a long road, with many tribulations. I've had four detethering operations since I was 3 years old. The most recent was in 2001, where the docs basically opened me up, then closed me right back up. They came out to my folks in the waiting area, who were shocked to see the doctors back so soon (This wasn't their first rodeo. They knew how long those operations should take.). The doctor said "We cannot safely operate, he has way to much scar tissue in there from all the previous sugeries." So after that, I went through all the joys of recovery from such a major surgery. At 16 years old though, I was pretty thrilled about all the school I would get to miss!!!! But anyway, I'm basically on here for support, making friends, to help and be helped. I have FINALLY reached a place of acceptance (mostly.... there are still times when I get really sad, angry, or frustrated about it... happen to anyone else?), and have decided that part of this acceptance is to begin to face the reality of it, and start learning, as well as reaching out to others who are facing the same challenges as I am. That's it in a nutshell. I don't wanna write an essay (not yet anyway...... I do LOVE writing). So feel free to say hello to the new guy!!!!

LisaJoy

03-08-2010, 02:39 AM

Hi, Haydenm! I'm Lisa -- I also have lipomeningocele, with some other types of lesions, too. I'm 45.

Welcome! Jump in wherever you like.

Lifeisgood

03-08-2010, 02:43 AM

Welcome Hayden,
I am 31 and also have lipomeningocele. Mine is at the level of L5 / S1. I've only had 1 surgery, but recently have had an increase in SB related symptoms. You've come to a great place. This board has been really great for me! At times I have some emotional ups and downs because of my SB (especially when my symptoms kick up). It comes with the territory. But there are other days when I don't really think of it at all.
We are looking forward to getting to know you!
L.

haydenm

03-08-2010, 02:57 AM

Thanks LIG (lifeisgood)!! I noticed you are from Boston.... I lived there most of my life, and had nearly all of my surgeries there as a child. 4 de-tethers, and 1 split tendon transfer in my feet. It's an AMAZING hospital, and one of the top ranked in the country. I'm exploring the boards right now, figuring out how to navigate the site. There's also two things I would like to post about, but I wanna make sure there's not a pre-existing thread first. Anyway, again, thanks for the welcome!!!:signs116:

haydenm

03-08-2010, 02:59 AM

Sorry, just realized I made a mistake. I was talking about an "AMAZING hospital", but didnt bother to say which!!! You probably could easily deduce it was Children's Hospital Boston, but I had to correct that error anyway. I'll let the smiley say it for me: After all, :signs116:

haydenm

03-08-2010, 03:03 AM

:sign0013:
Sorry to trip-post, but since this is the new member area, I might as well ask here: I want to start a thread on two topics. I checked to make sure there weren't any others, didnt find any, now I just need to know how to start one. Also, in case I overlooked some that are already here, my topics are:

"Has anyone had any problems with pain meds before? I sure have." and

-"Trouble re-building my team of docs after a big move. Help!"

Lifeisgood

03-08-2010, 03:07 AM

Hey Hayden,
You moved away from this great city? Bummer. Children's is a great hospital though. I was never treated there because I grew up in CT and I am now treated at Brigham. I moved to Boston for college and then permanantly transplanted myself after I graduated. I love it here! What brought you to Austin? I have never been but hear that it is a great city too!
Glad to have you on board!
L.
P.S. You can also search the boards using the key word of the topic you want to look for, but we often have multiple threads on similar topics, so that is okay too. :)

Lifeisgood

03-08-2010, 03:11 AM

P.P.S. It took me a long time to figure out how to start a new thread too.

Click on the 'Home' tab, then click on the forum you want to post on (e.g. adults, newly diagnosed, etc. Choose the one that is closest to the topic you want to post on) and then towards the top of that page, there is a button for new thread. You can go from there. Good luck!

Summer25

03-08-2010, 10:20 PM

Hayden,

Welcome! My name is Summer. I am 26 and live in FL. I have myelomeningocele spina bifida, hydrocephalus, arnold chiari, and a few other issues. I am in a wheelchair and have no feeling from about chest down. I have had close to 50 surgeries. I am a huge sports and music girl. I mostly like hockey and baseball. As for music, I like pop and rock mostly. Well, I just wanted to say hi and introduce myself!

mattywheels25

04-04-2010, 02:35 PM

hey there, my name is Mat, i'm 25, i live in a small coastal town on the east coast of Australia and have SB & H. I use a wheelchair to get around and have no feeling from the waist down. I'm currently in my last year of studying for my degre in communications majoring in public relations. Not real good at these intro thing so if theres anything you wanna know just let me now :)

Dodger67

04-04-2010, 06:25 PM

Hi Mat, welcome on board! :happy065:

Robinegg

05-24-2010, 07:07 AM

Hello

my name is Erin and my husband and I have a 3 year old son who has sb,mylo a shunt and various other diaginosis that we have had in the past few years my concern right now is his pancreas. Does anyone out there had Or have problems with their pancreas?

plaincoolguy

05-24-2010, 08:08 AM

Hi, I'm 36 and single. I've only been on here minutes. I have mylomeningeocele and hydrocephalus. I have only had fixed pressure shunts. My current one has been working since 1992. The dr. continues to tell me that there is no reason why it will not work an additional 20 years. Furthermore, just to add a little controversy, they do not recommend the programmable shunt. Those have more parts that could fail.

In the short time I have been on here, I have noticed the number of people in committed relationships. I AM SO JEALOUS. :33a: With the exception of cooking and some house cleaning, I am self sufficient. I even have my driver's license. It's so nice to read that there still might be hope for me. Well, that's all I have for now. I do hope to make friends here. :sign0009:

KMkaggerud

05-31-2010, 04:23 PM

I am also in the same boat you are in as far as being single and having a driver's license. I have my last shunt surgery in 1979 and haven't had any problems with the shunt since.

Kmkaggerud

LisaJoy

05-31-2010, 09:06 PM

Welcome! Be sure to sign up for the Adults section.

Dodger67

05-31-2010, 09:33 PM

Welcome on board!

angel

06-01-2010, 12:58 AM

Welcome to the group!!!

Angel

CREED0207

06-03-2010, 08:55 PM

Dodger67

06-03-2010, 09:08 PM

Welcome! :happy065:
Please explain why/how SB limits you to your home.

LisaJoy

06-04-2010, 12:20 AM

I have been scouring the web looking for resources available for people with SB. I would like to go to get my degree, but the sb limits me to my house basically and the financial burden would just be too much right now. Is there anybody that has been faced with this same issue, and is familiar with a way I could do online degree program at home, but find assistance for this as well. Any help would be greatly appreciated. Thanks a lot!
creed0207

Hi, & welcome to the site. Do you mind letting us know where you are? You don't have to be too specific -- the country, or state if you're in the US. It would really help to answer your question.

If yoou are in the US, you should be able to pursue an online degree at a nearby state university (paying in-state tuition). You might want to start with a community college, as they are more cost effective. I would avoid the "for profits", like University of Phoenix -- they are very expensive and have a very low completion rate.

My brother-in-law (who is not disabled) completed a bachelor's degree online through the University of North Texas. Tennessee has a program called the Regents Online Degree Program -- you can access the program with any Tennessee Board of Regents 4-yr institution as your "home" school. I'm pretty sure that the University of Maryland offers online degrees, and in fact, most state universities probably do.

As far as financial aid, if you are in the US, your absolute best bet is to contact your state's office of vocational rehabilitation -- they may very well pay the total cost of your degree.

If you are outside the US, someone else will have to speak up!

HennHouse

07-04-2010, 01:57 AM

Good evening... I'm new here, but have found the information presented so valuable already...

I have a four-year-old daughter with SB (L4/L5). She also has hydrocephalus and chiari II. She is an absolute joy--diva-licious! I write about her on my blog and on a couple of other blogs.

http://hennhouse.blogspot.com
http://spinabifidakids.blogspot.com
http://www.5minutesforspecialneeds.com

We just went to the national conference for the first time. Anyone else been? Wondering what others think...

Looking forward to making some good connections and meeting new folks with or raising kids with SB.

Karin.
(from the HennHouse).

Dodger67

07-04-2010, 06:35 AM

Hi Karin
Welcome on board! :happy065:

jelander

10-09-2010, 09:10 PM

Hi!

Just joined. I was born in the 60's with SB (mylomeningocele, about L5-S1); my opening was closed at birth. Got meningitis at birth and was in the hospital a month, very sick, but never had need for a shunt.

Had a urinary diversion (illeal loop) at age 5. A leg brace for a few years and numerous corrective leg surgeries growing up (and a few in adulthood). Had my cord untethered by the MAGNIFICENT Dr. Douglas Anderson at Loyola Hospital in Chicago (they have an SB clinic there) at age 40 when my walking quickly deteriorated using a cane! I now use a scooter or wheelchair when I have to do much standing or walking, otherwise just use my cane.

Got married soon after college (U of Cincinnati--very hilly, lol, but I managed!); I have three kids, ages 21, 20, and 17. I teach writing online and sometimes at a local college; I also work from home doing freelance editing and course development for textbook publishers.

A friend with an SB son referred me to this site. (I joined the United by Spina Bifida group on FB, too.) :)

Julie Elander

LisaJoy

10-09-2010, 09:19 PM

Hi, Julie! Welcome! So glad you found us.

I'm Lisa -- I was born in '64, but had a closed type of SB (lipomyelomeningocele), which was not operated on until I was 2 (Oklahoma Children's). I learned as an adult that I also have sacral agenesis and split cord malformation, as well as two lipomas. Had detetherings at 33 and 38. I walk with one AFO and crutch (neither of which I needed until after the second detethering), and also self-cath and take ditropan for neurogenic bladder. Currently retethered, but postponing surgery indefinitely (too risky).

I teach American history at the college level here in TN.

jelander

10-10-2010, 12:05 AM

Thanks for the welcome, Lisa! Sounds like we have some real similarities. I was born in 1960 in Indianapolis. I actually do have a lipoma (or did)--they removed it at the untethering, but I had continual spinal fluid leaking afterward, so they went in and restitched/glued me again, and had to lie in bed for 4 months to keep the pressure off the very small leak so it could heal. Can you say spinal headaches when I got up to go to he bathroom? Ugh! (I'd get a spinal fluid bubble under my skin where the lipoma had been.)

Then I got well, then I got West Nile Virus (it was that year when a bunch of people were getting it), then the hole opened up AGAIN from that!! Three more months in bed, and JUST as I was about to back into the hospital for a shunt to divert the spinal fluid for awhile off that spot TOTALLY, it closed!! Woohoo!!!!

So I hear you about waiting on the untethering/too risky thing!! I did love Dr Anderson at Loyola, though--he was one of the best docs I've ever had and had been untethering cords for 20 years. He was so frustrated that by taking out that lipoma my cord was attached to actually made it so hard to keep the spinal fluid in place. It was just a tiny pinhole, and hard to locate, so he really didn't want to go back in--so we were BOTH glad it healed finally!!!

Thanks again for the welcome and sharing some of your story! So nice to meet you!!

LisaJoy

10-10-2010, 03:49 AM

When I had my last detethering, the nsg said that the biggest risk was that he might not be able to get a water-tight seal. He did manage it though -- I just had the usual 3 days flat before I could move around, and no csf leak.

Dodger67

10-10-2010, 06:30 AM

Hi Julie
Welcome on board! :happy065:

I'm Roger, 42 yo, South African, Unmarried but in a LTR. No kids but uncle of 5. I'm an IT geek and wannabe high school teacher.
I have myelo at L3 with L2 also partly affected, no hydrocephalus, no chiari or tethering issues. I'm a fulltime wheelchair user.

check

11-20-2010, 02:04 AM

Hi all, I am sure my wife and I will be sharing this account. We have a daughter (Nicole) with sb and h that was born in 93. Yup she graduates this year - wow where does the time go. This site looks awesome hats off to the members and staff. We look forward to getting to know you all.

Lifeisgood

11-20-2010, 02:18 AM

Welcome Check!!! (and wife) :)

Dodger67

11-20-2010, 05:35 AM

Welcome Check and mrs Check. :happy065:

Please invite Nicole to join us too - with her own username.

LisaJoy

11-20-2010, 07:58 PM

Welcome aboard!

Lisa924

11-22-2010, 11:51 PM

Hello,
My name is Lisa and I am a 29 yr old woman with Spina Bifida level T-12. I live independently in my own apartment and I am currently working part-time as an independent living skills specialist with teenagers with disabilities. Medically I am doing very well aside from some back, neck, and shoulder pain. I am going in for an MRI tomorrow to see if they can figure why I am having pain and also because I was recently in a car accident while I was driving on my way back from somewhere and I was rear ended. My orthopedic who I have had since birth (and who is about 82 and still working) told me the last time I saw him that they are doing research on adults who have had Harrington rods placed in their backs as babies or young children. I guess people who have these rods are now experiencing upper back and neck pain as adults. Has anyone else heard about this or is anyone else experiencing problems with back, neck, and general upper body pain? I look foward to chatting with all of you.

Dodger67

11-23-2010, 06:11 AM

Hello Lisa
Welcome on board! :happy065:
Please add your location to your profile - it's often useful to know where you are.
Have you joined the Adults usergroup? we have a private section for discussing "adult" topics.

I had a Harrington for about a year after my L1-L4 fusion when I was 13 years old. I'm now 42 and I don't have any significant spinal issues.

LisaJoy

11-23-2010, 12:03 PM

Hi, Lisa! I'm Lisa, too. 46, lipomyelomeningocele, etc. No Harrington rods, so I can't answer your question, but I wanted to welcome you!

Bmb

12-12-2010, 05:31 AM

I was born in 1965 with a mylomenigocele. I was operated on when I was a day old. I led an active life for many years, not really understanding my disability, simply that I had bowel problems. I went to college and law school but shortly after graduating I became sick with a thetered spinal cord. I have since had several surgeries and have issues with concentration and other mental health issues. I feel lost at times but lucky to be healthy. Thinking of going back to work but don't know how to proceed. Bmb

Dodger67

12-12-2010, 07:21 AM

Welcome on board!

If you've been out of work for a long time taking a short course at college in something interesting and relevant may be a good way to get back into the working world.

Please join the "Adults with SB" usergroup (under the User CP menu). You'll then have access to a private section for adult issues.

LisaJoy

12-12-2010, 07:04 PM

Bmb,

Welcome! I was born in 1964 with lipomyelomeningocele. I've had two TC operations in the last 12 years.

Are you on any medications that might be affecting you cognitively/emotionally? You should really talk to your doctor -- tethered cord and tethered cord surgery should not itself affect your cognitive function. You also may have depression that needs to be treated -- it is very common in people who have chronic health/pain issues.

If you're worried about being able to keep up with a law firm job, you might want to consider something like a library science degree. Law libraries love to hire people who hold both the JD and MLS. It would be less stressful (although it would take a year or so to do the degree and of course there's the cost). You might even talk to your state's vocational rehab office -- they might be willing to help if you need to retrain because of your disability.

Bmb

12-13-2010, 07:52 PM

chelsea

01-03-2011, 07:52 PM

hi im new to this site but here we go lol
my son is 17 months and has myelomeningocele....hydrocephlaus.....small unworking kidney....2 holes in his heart....vp shunt in situ.....scoliosis....chiari malformation 2.....Stoma as he was born with imperforate anus.....and needs catheterised every 3 hours..

my name is chelsea and i fell pregnant with liam when i was 16 and had him by emergency section when i was 17....im now 18 and liams 17 months...and tbh i wouldnt change him for the world ...hes my life and i love him so much... everything he does makes me and his daddy so proud x

Lifeisgood

01-03-2011, 10:46 PM

Welcome Chelsea! Glad to have you with us!

Dodger67

01-04-2011, 08:09 AM

Hi Chelsea
Welcome on board! :happy065:
Good to know you're doing ok even with such a huge "shopping list" of issues to deal with.
Please feel free to jump in with any topic, we're very open here and have only one "rule": There are no dumb questions.

bellsmum

01-10-2011, 05:32 AM

hi everyoe i would just like to introduce myself my name is hilda im 28 years old and i have spina bifida occulta i have only recently started using a mobility walker because my legs have gotten so bad

Dodger67

01-10-2011, 08:02 AM

Hi Hilda
Welcome on board! :happy065:
W have a private Adults only section for discussing "adult" topics - you get access by joining the Adults with SB usergroup - it's under the UserCP menu.

Raleighs

02-09-2011, 11:28 AM

Thank you for your reply. My last TC was in 2004 and the Doctor failed to close the fluidiac sac and it leaked, causing intense headaches and a large sac of fluid in the base of my back. It took two more surgeries which included plastic surgury to close the fluidiac sac around the spine. Since then I have severe memory problems, hard to concentrate, I only read short bits of info at a time and I have a hard time even watching TV. Funny thing is, to look at me, you would think I'm the picture of health.

Hi, Bmb,
My son lost almost all use of his hands at the age of 8. It turned out to be a low pressure in the fluids in the spine. He had a shunt in his spine that was supposed to drain the fluid from an area in his lower back (similar to yours I imagine).
At some point, the low pressure in the spine region allowed the base of his brain to settle down directly on top of his spine. The lack of fluid flow then caused a fluid accumulation in the upper back which caused the lack of hand function.
To my point, you should have the base of your brain check with an MRI. If you didn't have Chiari malformation before, you may have it now since you have had such a low pressure level in your spinal cord region. You need to have a "cushion" around your brain in all areas. I suspect that you may have lost the cushioning fluid at the base of your brain.
For our son, the "shut off" the shunt in his back and within 48 hrs the fluid began to lift his brain from the base of the scull and his hands began working better. It was a rough recovery with frequent vomiting and headaches for several days, but after a week he was feeling better. He has not vomited ONCE since then (he used to vomit 2-3 times per week before when the shunt was keeping the fluid pressure low in his spinal cord).
I hope you feel better soon.
Raleigh

ebjflowerfairy

03-01-2011, 08:50 PM

Hi everyone I am the mother of a 7 year old little boy who was born with lipomeningocele and has had 3 surgeries for detethering. He is very active and anyone that does not know us persoanlly does not know my son has a disability. He can walk, which is a blessing, he caths himself daily and with assistance at school , his bowel and bladder functions have been some of our biggest obstacles. Any advice on this would be extremly helpful and also advice on what to tell my son for him not to feel sorry for himself. He is getting where he cries and pitches a fit bc he doesn't want to godo his cath and change his pullup. Hoping to meet lots of new contacts and get much need advice.

LisaJoy

03-01-2011, 09:28 PM

Hi, and welcome!

I'm Lisa -- age 46, lipomyelomeningocele.

Sorry I don't have any brilliant advice on how to handle a recalcitrant 7-yr-old, but I'm sure some of the moms will!

Nettie

03-02-2011, 07:02 AM

Hi flowerfairy! Welcome!

I too have a 7-year old. She doesn't have lipo, just a tight filum/tethered cord. They're doing surgery in 6 weeks time.

We don't cath yet, but I have the same problem with her and her pullups. And general hygiene because of her condition (neurogenic bladder and bowel). She hates taking a bath in the middle of the day after a particularly bad accident. Or disposing of the pullups in the acceptable way. I tried disciplining, but then talked to her psychologist about it.

Psychologist said, because of everything that happened to my daughter, she's extremely emotionally fragile at the moment. So she asked me not to discipline my daughter any more for these issues (like time-out because she threw a tantrum instead of taking a bath), but rather try a star-chart.

I've started it about 4 days ago, and I'm pleasantly surprised! Every night, she gets a star/sticker on her chart if she did good that day. Not complaining when she has to take a bath, taking care of her pull-ups, etc. And she's really, really trying!

So maybe this can work for your son too?

Noefnway

03-20-2011, 08:05 AM

Hi Barb!
It's great to be here! I am a 48 year old male born with myelomeningocele @ L5,L4.I work as a nurse primarily taking care of paralyzed individuals.-I figure that if I can't be of service to paralyzed people I should probably hang it up!I ambulate like a Weeble-You know "Weebles wobble but they don't fall down".I've had various SB related surgeries along the way and recently have had problems with a neurogenic bladder.I'm concerned about a tethered spinal cord at this time.Well, thanks so much for creating this site.I'm looking forward to interacting with other persons with SB.

TRW0224

04-07-2011, 09:04 PM

Thank you for making this forum

Jen Gem

04-17-2011, 08:38 AM

Thank You! This is a fantastic site. I have struggled to access a support network as my daughter has SB, but up until now has had very little problems. Rosie is 6 years old and has just had detethering surgery which has gone really well. She is fully mobile, and the surgery has stopped the leg pains she was experiencing. She has very little bowel/bladder sensation which is getting harder to deal with. Accidents are ok when you're little, but getting tougher now she knows her friends don't have them. Great to hear we are not alone out there!
Hi! My name is Barb and I am an admin here at SBC! Years ago I opened this site as a forum for people living with spina bifida. It was a great and active forum but, unfortunately, my real life became very hectic (lots of surgeries) and I also went back to work at the same time. I had to close the board which was very sad for me. I am so happy that we are able to reopen the site and have the financial backing of a parent company to keep it open for the long haul this time!

So, my 'story'. I am a mom to two boys, one who was born with an L3-L4 myelomenigocele. He is 9 years old now. My other is 11. "C" as I will refer to him for short on the boards is recovering from his 1st detethering in May. It has been a LONG road. He was ambulatory with bilateral afo's prior to but is now using his chair full time. Rather than tell it all in a story I will bullet point his various diagnosis:

shunted hydrocephalus (programmable)
slit ventricle syndrome
chiari II malformation (decompressed at age 3)
cecostomy
autistic spectrum (very high functioning)
latex allergic (has had anaphytic reaction)Now the IMPORTANT stuff:

He is very, very cute (no, really he is!)
On grade level in all subjects but math (we are homeschooling this year)
Pretty much a typical kid
He loves Disney and Bears
Wants to be a Rock Star or an Imagineer when he grows up
Has a very cool new TiLite chair with light up wheels.So, I guess that about sums it up. I loved sharing with and learning from all the members years ago and I am so lost without the support.

angel

04-17-2011, 01:37 PM

Hi
Welcome to the group. You are not alone at all! There are hundreds of thousands of people in the world that have SB. We dont' have quite that many here but we have a pretty good collection of folks with about any experience you can think of.
Jump in wherever you like :)

Angel

LisaJoy

04-17-2011, 08:51 PM

Welcome! Glad you found us.

If detethering surgery did not help your daughter's continence issues (and it very often does NOT help in that area), your daughter should be evaluated for other continence management strategies.

Is she catheterized? Does she take oxybutinin? That would be the place to start for bladder continence. I, too, have a "mild" form of sb and have undergone detethering 3 times in my life (I'm almost 47). About 9 years ago, it had gotten to the point that I was having to try to urinate every hour and still had accidents. I started a self-catheterization program and started taking oxybutinin (extended release). It worked wonders! My bladder continence is almost "normal" now -- I rarely have accidents and generally go 3 hours between caths.

I've never had more than minor issues with bowel incontinence, but people who do usually start with a bowel management program. Some people manage fine with regular use of laxatives, but it seems like most people I've met on here have the best luck with an enema program.

I realize you're in the UK, but this link has some great information:

http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/treatments/bowel-management-program.htm

Dollface

05-17-2011, 03:15 AM

Hey everyone! I'm Marie. My almost 3 year old daughter has spina bifida and hydrocephelus. Her level is from T11-L2. She's a very happy and active little girl. She loves her wheelchair and the fact that her back wheels light up and she never meets a stranger! I'm pregnant and due in September with another little girl who looks healthy according to ultrasounds! We live in Tennessee and unfortunately I have not met anyone in this town yet who has a child with spina bifida. I'm part of the SB Moms and Dads Yahoo group but have been looking for something more in the way of support as well.

LisaJoy

05-17-2011, 04:07 AM

Hi! We have a couple of moms on here who live in East TN. I'm not a mom -- I have sb myself & live in the Nashville area.

Welcome!

Dollface

05-17-2011, 01:52 PM

Really? We live in Knoxville. Until recently, all Kaseys doctors were in Nashville but we've slowly had to switch over to Knoxville everything but her neurologist because 3 hours is just too far a drive!

Dodger67

05-17-2011, 02:06 PM

Just saying Welcome! :happy065:

Dollface

05-17-2011, 02:09 PM

Thanks. I don't know how I missed this site in the past with all the googling I do lol. A friend knew I was looking for more people to talk to and found the site and sent me the link.

Makennasmom

05-17-2011, 11:44 PM

Hi Marie,

I'm glad that you finally found this site. I hope that you like it as much as I do. By the way I'm Rhonda, we have met through Melonie our wonderful pt. That is a cute picture of Kasey. Congrats on the new baby.

john best

06-10-2011, 10:01 AM

Hello Everyone,
I'm new and my name is John Best but always been called by middle name Rod.
I'm not really a Spina Bifida Patient. I was in a near fatal car accident
2-3-2010 that broke my pelvis, left hip, right heel etc. Didn't really help my back that much either...lol....
anywayyy.... the traction for my hip kinda messed up my left knee and I can't bend it all the way anymore (swolen)...
oh yeah got some nerve damage (50 % numbness in both feet) ..left worse than right,
but metal on rt. ankle to reattach my broken heel got it kinda stiff and swollen also.
I currently walk about 1/2 speed with not much enjoyment of walking anymore.
Suffice it to say at 51 1/2 years old my running days are over...hahaha....
Did ask the doc when I could be realeased to play football again...lol...

Sooooo... the orthopedic doctor that supplied an AFO for my left foot, which has a toe/foot drop problem now
supplied me with a pair of ANSWER2 Shoes. Kinda a white athletic style tennis shoe style that seems to work
as well as anything except the regular brand of workboots I normally use (I'm normally an Electrician)
and the shoes are kinda starting to wear out so I happened to be on the internet tonight and did a web search
for ANSWER2 Shoes and 1 of the results pointed me to this site for information on them.

Sorry this got a little long...lol... but anyway was kinda hopeing to find a source for these or some other
comparable shoes like them that might facilitate the use of an AFO and someone with kinda simular physical
problems as myself. Oh yeah reasonably priced also. I'm currently not employed and not much income and no
health insurance.

Other than that life is good.... and I'm still here to talk about it.....lol
I do want to express my simpathy and prayers to everyone here with physical problems of your own.

We do have a foster daughter born about 1 1/2 pounds shes turning 10 on
6-15-2010
She has had her share of health issues also but has had orthopedic, feeding and behavoiral issues
most of which are better except for the behavioral stuff.

My wife of 34 years (Dee) is my age and has recurrent hernia issues. We are both Diabetic. We also have 2 other grown children.

Whew!!!... lol...anywayyy taken up enough of your time and space for now.
Feel free to reply or post anytime to me.

Thanks Rod

LisaJoy

06-10-2011, 03:45 PM

Rod,

Finding shoes that work with AFOs is always a hassle. My personal experience has been that more expensive shoes work better and last a lot longer (I have a pair of Ecco sandals that I bought for $100 7 years ago and I'm still wearing them).

The brands that I have found work best are Easy Spirit and New Balance -- at least in women''s shoes; don't know if the same brands work for men. I buy mine in wide and 1/2 size larger than I really wear to accommodate the afo. I use the laces/velcro to tighten up the side that I don't wear an AFO on. In some shoes I find that a thicker insole on the non-afo side helps the fit.

Footsmart.com carries a lot of shoes with extra depth for orthotics, as well as shoes especially designed for diabetics. Although I suggest finding shoes on their site and then going to Zappos.com to find a better price -- Zappos also has free shipping both ways, in case you need to return.

Good luck! If you find something that works especially well, please post it here; there's always someone dealing with this issue.

Kent T

06-24-2011, 02:20 AM

New Balance 587 shoes worked for me. Have plenty of room for an AFO and are available in widths. I live 50 miles from Knoxville during the week, in the area on the weekends. And have SB kiddos around.

Mon74

07-09-2011, 01:22 AM

Hi there, I am from New Zealand and new to this site, looking for all the info I can find on SB.

Bonnie Beacham

07-30-2011, 03:42 AM

I have just stumbled onto this site, so I'd like to introduce myself and my family. I have 3 children, ages 18, 13, and 4 (almost 5). My daughter has myelomeningocele spina bifida. As a result, she has a VP Shunt and cecostomy. She has to be cathatherized every 3-4hours. Like most of you, we have found a new 'normal' and work diligently to stay on top of her health issues. We live in a small town on the east coast of NC, and I know of only one other family in our area that has someone with spina bifida, so you can imagine how excited I am to link up with people from other places that can answer questions, provide encouragment and share their stories.

Because my daughter first came to live with me through a foster care placement when she was 17 mo. old, I have had a crash course in psychiological, medical, emotional, and practical aspect of her condition. I have a lot of questions, and am going to be perusing the threads in hope of finding out ways to navigate her health care.
Thank you for sharing your insights.
Bonnie

LisaJoy

07-30-2011, 05:01 AM

Hi, Bonnie, and welcome! Is your daughter the 4-yr old?

Dodger67

07-30-2011, 06:52 AM

Welcome on board! :happy065:

Bonnie Beacham

07-30-2011, 01:16 PM

Yes, my daughter is the 4 year old (she'll turn 5 in a few weeks).

Betsybell

07-30-2011, 01:42 PM

Welcome! We have a daughter with SB that we adopted when she was almost 3 years old. It is a lot of learning to do, sometimes I felt like it took me forever to catch up to where I should be knowledge wise. But now after three years of having her here I'm more confident about most things!

Betsy

worriedmum

07-30-2011, 10:02 PM

Hello everyone im Katie from Scotland. Just worked out how to do this (not very good with computers). expecting sb baby girl on the 8th of october and soso glad i found this site. Everyone is so nice and welcoming.

Dodger67

07-31-2011, 06:25 AM

Hi Katie
Welcome! :happy065:
Have you given your daughter a name yet?

worriedmum

07-31-2011, 02:42 PM

Hi dodgers. yes we have named her Caoimhe (pronouced kee-va) its irish gaelic, liked the meaning of gentleness and beauty.

mcco5543

08-01-2011, 01:16 AM

I LOVE LOVE LOVE this name

Dodger67

08-01-2011, 06:49 AM

I wonder why Gaelic pronunciation and spelling is so completely unrelated?

My maternal grandmother was Scots - though a lowlander so no Gaelic.
The family's claim to fame is that granny's brother owned (his son owns it now now) the pub in Dumfries where Robert Burns used to hang out and had an affair with a barmaid! Uncle George was one of the big wheels of the worldwide Burns' Society (or whatever it's called).

worriedmum

08-01-2011, 07:14 PM

Thannk you :) we love it tooo.

I'm not really sure why either dodgers. Thats really interesting about your grandmother. I have never actually been to dumfries although it is nto very far from where i live, will need to visit it sometime whats the pub called so i can visit that too ?

hinny

08-22-2011, 10:46 PM

Hi, I'm new here and I joined the forums because I am in a long distance relationship with someone with spina bifida. We are meeting in person in a week and I've been doing a lot of searches on the internet to find out more about spina bifida but it seems it varies greatly from person to person.

I was hoping to get more information about spina bifida because it is very difficult for him to talk about it and I want to be as supportive and sensitive as I can be. For some reason, I still can't access the Adults section.

I realize this is unconventional, but I want to spend the rest of my life with this man, and it is VERY difficult for him to talk about it and I don't want to force the issue when he isn't ready. I just don't want to unintentionally hurt him.

LisaJoy

08-23-2011, 07:56 PM

Hi! You can join the Adults group by clicking on "User CP" in the brown tool bar, then clicking on "group memberships" and checking the box for adults.

Dodger67

08-24-2011, 06:32 AM

Welcome on board! :happy065:

maggiemylove2012

09-22-2011, 06:45 AM

I'm 33yrs old I was born with S.B. & Hydrocephalus at 1st I had a V.P. Shunt until June 2010 the DRs tried to repair it, it worked fine for only a few weeks then back in the hospital again & again then Dr. Tulipan decided to make it a V.A. Shunt this went on for 7 months to start out everything was fine until 8-22-2011 the top part of the Shunt had busted so back to the O.R. again for surgery #8. Now I just get blood clots in the tubes. Now I would like know if me and my wife(Maggie) can move on with our lives, probably not we both fear of it killing me.

Thanks,
James Thomas Reeves :signs116:

Dodger67

09-22-2011, 02:43 PM

Welcome on board James
I don't have any personal experience of shunts so I can't really offer any advice. I'm sure others who might have answers for you will be replying soon.

LisaJoy

09-23-2011, 04:08 PM

Hi, James, and welcome! I don't know anything about shunts, either, but Dr. Tulipan is my NSG too (although I've seen him only once -- have an appt on Oct 10).

Lifeisgood

09-24-2011, 02:06 AM

Welcome! I am sorry to hear all that you are going through. I do not have any experience with shunts, but if you also want to post this in the hydrocephalus subsection of the site, you might get a few more people reading it and responding. I wish you and your wife the best! Hang in there!

hotwheels95

10-20-2011, 07:08 AM

Hey, I am a 16y/o teenage girl with SB. I see myself as completely normal besides the "normal" challenges anyone in my position would face. I have a Monti & a Mace. I don't know which is which but I pee out of a hole on my side with a catheder and I am 'supposed' to irrigate my bowels through my belly button. I was a cheerleader for football & basketball both seasons during seventh and eighth grade (: I was also a JV basketball cheerleader my freshman year of high school. I get very good grades and am a state PTA board member and am involved in my STUCO. I love to be with people and party like no other! A recent obstacle I have is with my bowels though. I have very little control and so I am supposed to irrigate it daily but as being a teenager I am extremely stubborn and just don't want to do it. But it is now effecting my daily life. I am scared to go out and enjoy life like I used to before I became self conscience of the issues of not having control can present. I am also wanting to learn to drive VERY VERY SOON! - I am very excited to be on this website & this is the first time I have ever done anything like this [ as in - talk with people with the same problems as me ] Thanks for welcoming me with warm and open arms (:[/FONT]

Dodger67

10-20-2011, 10:53 AM

Welcome on board! :happy065:
We have a small number of teen members so it's really good to have another join us.
There is a private "Teens only" section that you can access by signing up to the Teens usergroup (It's in your "User Control Panel" menu)

LisaJoy

10-20-2011, 07:21 PM

Welcome! Glad you found us.

MissWhooo

11-15-2011, 12:16 PM

I am despertly on the look out for someone in scotland who has Spina Bifida

My name is Louise and i am a university student in Edinburgh and for my mojor this year my group we are doing a documentary
on a 2 year old girl who has Spina bifida and how she copes with it. its a very uplifting story.

What we are looking for is an adult who has Spina Bifida and would be willing to talk to us about how you go about your day to day and how it has effected to life and what changes you have seen over the years in helping those who have Spina Bifida.

we would only be looking for about 10-20 mins of your time and if your in Edinburgh that would be even better but we are willing travel but if it could be done either Tuesday or Wednesday of this week you would have no idea how much it would be apperated

If you are willing to it would be fantastic and would help us so much to make the peice perfect,

If you can please get in touch either to louise.m89@live.co.uk or even call me anytime on 07762075942

Best regards and hope to hear from you soon

Louise Marshall

M A R K

11-18-2011, 02:20 PM

Haven't got the gist of the different sections of this forum yet , as i only joined at lunchtime today. Anyway, I am Mark and I'm 47.

Dodger67

11-18-2011, 03:33 PM

Hi Mark, welcome on board. I'm Roger, 43yo, South African, uncle of five, father of none. IT geek and currently a fulltime student. I've just written the last exam of my first year of a BA in Communication. I have myelo at L2-3, no hydro, no chiari. Fulltime wheelchair user. I'm sure you'll soon figure out how we're set up here, feel free to jump right in on whatever grabs your interest.

rwatson64

01-09-2012, 11:17 PM

Wow, what a forum! I believe this is what we are looking for! Have a few questions about SB and I hope this is the place that can help us! Thanks for a great forum!
Rich

Dodger67

01-10-2012, 05:48 AM

Welcome on board Rich! Please tell us a bit more about yourself.

chocoholic1985

01-15-2012, 05:00 PM

I was born on the 5th February 1985 at Northgate Hospital, Great Yarmouth with Spina Bifida and Hydrocephalus. Spina Bifida (split spine) means a bit of my spine hadn't formed properly when Mum was expecting me. As the air gets into the spine it affects the spinal cord which is linked to every part of the body so each person with Spina Bifida may have different problem areas. When I was 14 hours old my back was closed up at Addenbrookes Hospital, Cambridge and I had my 1st shunt fitted for Hydrocephalus.

Hydrocephalus means "water on the brain". CSF builds up in my brain. I have a special tube called a shunt in my head to drain the fluid away but it hasn't worked for over 10 years so fingers crossed I won't need another one. I have had 4 operations to have shunts fitted, one at 14 hours old, one at 6 weeks old, one at 6 months old and one at 10 months old at Addenbrookes Hospital, Cambridge.

My Mum and Dad were told I would never walk, however I began walking at the end of 3 with the aid of a lovely red walking frame. By the age of 6 my feet started to turn and I walked on the outsides of my feet. I got fitted with some special boots called pedro boots with leg calipers. I wore them until the age of 8 when the doctors decided that they were not straightening my feet and I had my 1st foot operation. I've had 4 foot operations, one at 8 years old, one at 10 years old, one at 13 years old and one at 18 years old all at the Norfolk and Norwich Hospital.

I also have kidney and bladder problems which is also common with people born with Spina Bifida, but fingers crossed this seems to be under control at the moment. I also have a slight curvature to the spine.

Spina Bifida affects my walking, I get tired easily, have poor balance and can be in pain when I walk, my coordination is bad sometimes, I can't stand up for long. I find stairs difficult to climb, can't carry anything too heavy and generally take a little longer to do things. I tend to adapt and find ways to make the difficult things easier.

Hydrocephalus affected my schooling in some ways, my short term memory is not good, long term memory is great. This is common with hydrocephalus. Also spacial awareness is affected which means how close or far away I peceive things to be.

I am a shy, sensitive person and worry about just about anything! I will always be nice to people and rarely treat people disrespectfully and argue, it isn't in my nature! I always try and see the best in people so I learn the hard way when people show their true colours! I hate being ignored, if I care about someone I will ALWAYS be there for them however busy I am! I am an only child. My friends mean the world to me and sometimes I don't know what I would do without them. I enjoy shopping, listening to music, looking after my two dogs Louisa and Lucy and I'm known for loving chocolate :D

LisaJoy

01-15-2012, 07:45 PM

Welcome! Glad you found us.

Dodger67

01-16-2012, 07:58 AM

Welcome! :happy065: What an awesome intro, you're a really good writer, add language skill to your list of talents! I happen to have very good spatial perception and awareness, it's my algebra that seriously sucks! I just spotted one small error in your "essay": in the third sentence you say air affected the exposed nerves, but it's actually the amniotic fluid that does most of the damage, long before any air exposure.

chocoholic1985

01-16-2012, 06:12 PM

I have all that on my Facebook profile and not to confuse people I try and write it simply! I just copied and pasted it. To be honest I wasn't quite sure what happens myself and I've been living with the condition for nearly 27 years. I had to ask my mum before I typed it lol

Paul2012

02-13-2012, 05:28 PM

Hello,
I'm 31 from Germany, with SB (L4/L5)

LuckyOne

05-14-2012, 11:23 AM

Hello, I'm a 46yo male with SB @L4. I picked the user name that I did, because well... Until I was in my late 30's, I had no real problems(that I knew of) with my SB. Now, I have a few of them, but after some research I see that I am one of the lucky ones

Dodger67

05-14-2012, 01:05 PM

Welcome on board! Tell us a bit more about yourself and your SB issues.

LuckyOne

05-14-2012, 02:33 PM

Hi Dodger, Well, bowel and bladder dysfunction, have to wear padded underwear, and cath 5-6x a day, deal with a whole lot of pain because of TC, and have some sort of mass throughout my entire L spine. It was explained to me in 04 before an unsuccessful mass resection(couldn't get it all out), and cord release, that the mass was some sort of accumulation of epidermoid cells that had started after the surgery at birth.

I've been re-tethering for for at least a year, and am now having a hard time getting my US to remove an Interstim implant(that the batteries have been dead for at least 3mos), so I can get an MRI, but my primary who I just got off the phone with is getting ready to make some things happen. It probably wouldn't be such a mess, but I moved to a different state and am still trying to put together the right doctors that will work on the same page with each other.

:2aa: