Just Talking and maybe a question or two

[nos455]

Hi all I am 37 years old I was born with sb ...so I have been told my mom said when I was born my spine was out of my back about 2" the Dr's told her they was going to do surgery on me the next day they told her I had SB and I would most likely not ever walk or have any control over my body fluids so far I have done everything they told my mom I would not be able to do..I have a big scar on my back and as a teen it often hurt and swelled up as I get older it is more often I have not seen a Dr. for it for years . I have been a Mechanic and have been all my life .this is all I know ..but I think is time to get in to see a Dr. my legs has been going numb and giving out on me I'm not going to lie this is starting to scare the hell out of me because if something happens to me how am I going to be able to support my family......I'm sorry for going on what should I do or expect... Thank you Ray

[Barb]

I hope you don't take this the wrong way and maybe some of the other adults here may have a different perspective but it seems so odd to me that you would not have been followed by a team of doctors since your birth. Spina Bifida is a very serious birth defect and has many, many secondary diagnosis that need to be followed pretty carefully. You really need to start reading ALOT and educating yourself on your condition, asking as many questions of your doctors as you can and getting old medical records. If you had a myelomenigocele closure surgery at birth (which is what you described) than you would have the most serious type of spina bifida and you need to learn about all of those side effects as it can and will greatly affect your life. The symptoms you are describing now sounds an awful lot like a tethered cord issue. Try this thread for more info on tethered cord related to spina bifida. (http://spinabifidaconnection.com/showthread.php?t=12&highlight=tethered+cord)

[Dodger67]

I can only add to Barb's reply by saying that it is extremely worrying that you know so little about your condition.
"Normally" people with spina bifida rapidly become experts - and often know much more about it than most doctors.

The "swelling" at your scar site that you describe sounds to me like leaking cerebro-spinal fluid.
If that is case the original closure was not done correctly and it should be repaired as soon as possible.

[Barb]

The "swelling" at your scar site that you describe sounds to me like leaking cerebro-spinal fluid.
If that is case the original closure was not done correctly and it should be repaired as soon as possible.

That is a good call. :)

[nos455]

We have contacted my old Dr. I seen as a kid he no longer has any of the records my wife has talked to the hosp. where I was born and they are looking for the records ....you said I should know more about SB. most of the Dr's I have seen in my life when I tell them I was born with SB they say oh your lucky and that is all they say ... I know over the past few years it has been really bothering me a lot ...And don't worry I will not take anything personal. I feel kind of bad for not knowing more about it. Now that you say that it makes me wonder why I have not been followed by a team of Dr's...Thank you...Ray

[Barb]

That is great that you are looking for the records and fabulous that you have done so well all these years. The one thing about spina bifida is that there is no 'typical patient'. There are experiences/conditions that many people share but there is no way to truly say what gets affected in each individual.

It really is interesting to have not had a lot of follow up but maybe they just felt that you were doing fine so why interfere. I am not sure where you are located but I would look for a neurosurgeon with experience in spina bifida (not all of them do) asap. You will need an MRI at the least to check the lesion. That would be a good start :)

[eng188]

Wow.

Not sure what to say but wow. I guess this just underscores what I have felt for the past 8 years I've been a case of the SBA Western PA: education about specific disabilities is so incredibly important from the get go. I had two social groups as a kid: one able bodied and one was a mixed disability crowd that I'd see at city-funded social events. No harm in socializing with mixed abilities of people, but I sure do wish I didn't grow up so in the dark about what SB was all about. I never even knew about enemas and adult shunt failure until I moved to W PA (at age 24!). These things seem so basic to living a proper SB life. But you can't know unless you learn somehow.

I ramble, but count me as another who has lived blissfully naive about certain health and logistics issues that pertain to us. I am so glad to be learning from the Connection.

[Dodger67]

The "support system" clearly failed in your and Ray's case.
Unlike Ray I would take the issue VERY personally and raise hell with whoever was supposed to be responsible!
I might even be tempted to use words like "lawyer", "human rights violation" and "lawsuit".
But thats just me - I'm a fighting kinda guy!

[nos455]

[QUOTE=Dodger67;1746]The "support system" clearly failed in your and Ray's case.
Unlike Ray I would take the issue VERY personally and raise hell with whoever was supposed to be responsible!
I might even be tempted to use words like "lawyer", "human rights violation" and "lawsuit".
But thats just me - I'm a fighting kinda guy![/QUOT So what do you think I should do....I had x-rays today the dr. said she will get back with me by the end of the week.... IDK..:arrgh:

[angel]

[QUOTE=eng188;1745]Wow.

Not sure what to say but wow. I guess this just underscores what I have felt for the past 8 years I've been a case of the SBA Western PA: education

What part of PA? i am in northwestern PA.

[eng188]

I'm in Allegheny County, 15 mi north of Pittsburgh.

[Barb]

[quote=eng188;1745]Wow.

Not sure what to say but wow. I guess this just underscores what I have felt for the past 8 years I've been a case of the SBA Western PA: education

What part of PA? i am in northwestern PA.
Go to your profile and insert your location so that it shows in your posts like mine and Dodgers do. It makes it soooo much easier when trying to give advice to people:peace:

[eng188]

Thanks. Just put in a bit.

[ollieholmes]

Where abouts in Pennsylvania? I spent some time working on a Summer camp a few years back in the Honesdale area.

[eng188]

I'm about 20 minutes from Pittsburgh.

[angel]

I am right outside of Erie