spina bifida occulta

[princessclo]

I dont really know much about whats wrong with me
all i know is i have a mild form of spina bifida
and have to go for lotsa scans every year or so
any one want to explain more?
also with this case i have a small patch of hair at the base of my back
i want it removed? anyone else have this and kno whats safe

[Dodger67]

If you want the hair removed I'd advise consulting a dermatologist.
If that is the most serious issue you have, you are very, very lucky!

[angel]

My son has it as well. And like dodger said if that is all you have to go through you are very very lucky. My son can walk but has had 2 major surgeries and one minor one. He is 12 years old. He doesn't have hair at the base of his spine he has little red dots. They look more like birthmarks but that is what he has instead of the little tuft of hair. I also agree with dodger about consulting a dermatologist. I don't know if you had it removed would it grow back?

Angel

[rach378]

I have sbo, mine started when i had a raised lump of fatty tissue on the bottom of my spine with a mole.
I've had three major surgeries when i was 9, 10 and 12. Im 27 now and i have 2 children, i have been with my partner for 11 years. I have had my bladder reshaped
I have just found out i have to wear an ankle brace for the rest of my life. I have to go and see a surgeon in 1 month to see when i have got to have my next spinal operation. A patch of hair is nothing to worry about, when you have got problems like:
Wetting your-self on a daily basis
UTI's all the time
Scared to go out just in case you fall
Worried about people seeing your scare's and having to explain and have people fell sorry for you.
Hair is nothing, wish thats all i had to worry about.
But any-way talk to your doctor and they will be-able to help

Rach

[sheena]

Worried about people seeing your scare's and having to explain and have people fell sorry for you. Rach

I wouldn't worry about this too much. I have a rather large scar from my previous surgeries down my spine, and all over my left foot, and this didn't stop me from going to the beach in a two piece! lol Noo one really gives a hoot. And those who do don't matter. Although I do get the occasional glance here and there, but that is usually due out of people's curiosity. The way I see it, people are too into themselves these days, that they really don't notice anyone else lol.

[sheena]

I dont really know much about whats wrong with me
all i know is i have a mild form of spina bifida
and have to go for lotsa scans every year or so
any one want to explain more?
also with this case i have a small patch of hair at the base of my back
i want it removed? anyone else have this and kno whats safe

I agree with everyone here when I say that you are very lucky thats all you have to endure. As for laser hair removal, it varies depending on the person. In order to achieve at least an 80% rate of hair reduction a person may need a series of sessions ranging from 4-8 I believe (depending on how hairy you are). After completing the initial treatment, people may require maintenance sessions once or twice a year to keep new hairs at bay, and in some patients hair loss may only be temporary and can grow back. At any rate, I've heard that people with darker hair have a better success rate since black or brown hair contains the most pigment, and are typically more course producing better results. :) In any case laser hair removal is pretty safe. Although if you don't want to do that, I guess waxing is also alternative. Sorry for taking you guys off topic, btw.

[dahliafaolan]

I wouldn't worry about this too much. I have a rather large scar from my previous surgeries down my spine, and all over my left foot, and this didn't stop me from going to the beach in a two piece! lol Noo one really gives a hoot. And those who do don't matter. Although I do get the occasional glance here and there, but that is usually due out of people's curiosity. The way I see it, people are too into themselves these days, that they really don't notice anyone else lol.

I'm just as bad. I have one really long scar down the length of my back and then one that comes from that scar to the point of my rib on the right side. My abdomen is also riddled with scars. And now I have my brand new one on my chest. I don't see them as something that should be hidden. I see them as something that should be celebrated. They are our proof of what we have been through. They are proof of our strength. They are our badges of bravery and we should be proud of them. Our scars show that we are survivors, warriors in our own right. Personally, I try to find things that show off my scars. Of course, I won't show off my abdomen scars (I don't care how liberated I am, there are things only my lover or my doctor should see), but I am happy to show off my back scar, knee scar, and my brand new one. So if anyone can suggest a place where I can find some modest backless attire, I would be most appreciative. lol

[Dodger67]

So now we're into a "my scars are longer/more/worse than yours. I love challenges.
I'll ask my gf to take photos of some of mine to show y'all! Maybe we can get a few unbiased/unscarred members to give us scores.

[Darangen]

So now we're into a "my scars are longer/more/worse than yours. I love challenges.
I'll ask my gf to take photos of some of mine to show y'all! Maybe we can get a few unbiased/unscarred members to give us scores.

It's a spina bifida version of a length-measuring contest ;D

[Gymp]

Scars eh....Yep,I got plenty.A huge upside down "T" on my back (Harrington surg. and detethering),two large scars on my front torso (Heart patch surg. and kidney removal surg.),both feet as well (straightening out my feet surg.)Lots of scars from requiring stitches (the pitfalls of not playing safe whilst growing up).Emotional scars (from being dumped by members of the opposite sex while growing up) as well.There are probably a few more that I can't think of at the moment.

I agree with Dahli that they're:
" They are proof of our strength. They are our badges of bravery and we should be proud of them. Our scars show that we are survivors, warriors in our own right."

When kids do ask about them I actually do say that they're old war wounds...

If one was to measure the length of all the scars of the members here at the forum and add it up I wonder how far around the world it would go????

Gymp

[dahliafaolan]

Ironically, I've never had anybody ask about my scars. I've had one girl scream from the sight of the one on my back, but I've never had anyone ask about them.

[Gymp]

I've had one girl scream from the sight of the one on my back

LOL...Did you scream back at her?
My nieces and nephews were the ones who asked bout them and that was when they were wee ones.I couldn't be bothered explaining so old war wounds came out of my mouth.

I've gotten some long hard stares at the beach where I'd be shirtless sometimes I'd stare back and other times I'd pay them no mind,it would depend if I was in a crazy mood or not.

Gymp

[dahliafaolan]

No, I was too surprised to do anything. It was for our senior pictures and a girl in my class had to help me put on the stupid drape. Needless to say, by the time the photographer and I started arguing about how much cleavage should be showing, I was not a happy camper!

For the most part, the only time I've ever shown off my scars was while I went swimming at the local pool, but since I've kept my hair long since I got the first scar, it's never really been an issue. But so far I've been lucky enough that every guy I've been with has considered my scars beautiful. But the few times I've caught people staring, I'll just smile and wave and they'll normally get so uncomfortable that they'll turn the other way and sometimes run off because they're so embarrassed.

[Mustang Sal]

I used to hate my scars - i'd rather have died that let anyone see them. But i'm a lot more accepting these days - I agree that they are proof that we are survivors :)

I remember someone at primary school seeing my scar from my detethering surgery and rumours started going around that I had '2 belly buttons in my back' (I have 2 dermal sinuses going into the scar). One girl (who was a notorious bully) asked me outright about it, and while I was afraid of her, I had no choice but to show her. She never bothered me again!

My own sister used to be really funny about touching it - if I had to have sunblock put on, she would only go as far as the scar then go 'oooh it's horrible I can't touch it' so my mum would have to take over. It didn't bother me that much as she's a bit of a wuss anyway - besides, I don't have to ask anyone to do my back anymore because I can do it myself (one of the benefits of having relatively long arms for my body!)

I've not actually measured my scars, but I estimate that if I added them all together they would be about 24" - probably nothing compared to some of you!

[angel]

The scar that i have which bothers me the most is not SB related but C section related. My scars on my back have faded to the point that they aren't very noticable. The scars from where they fixed my club foot hell i can't even find them anymore (there were 3) My c section scar though it is still very noticable. 12 years afterward i still can't get my tummy muscles where they once were ( i used to have a cute little flat tummy but that ship has sailed) It looks like i have a butt crack on my stomach. When i went in for my c section i was told that they would do a bikini cut from side to side and shouldn't be visable while wearing a bikini. I woke up and first thing i noticed was that my belly button hurt really bad. Come to find out my son was to big and they had to do the cut from my belly button down. Now that i am older it isn't so bad the days of the mid drifts is over for me anyway.

Angel

[Brandy0215]

The scar from my shunt placement starts between my shoulders and goes half-way down my back and I can't stand for anybody to touch it.My Sister was looking at my back and since I can't see where the scar is she Ran Her finger down it and I about fell off the bed.It was such a weird feeling and every time she rubs my back i remind her not to touch it.

[Gymp]

I have a scar on my left foot,my bad foot with not much feeling in it.If I run my finger along that incision line it still tingles like the dickens,although the surgery was done some 39 years ago.My other scars that I have don't tingle at all.

Gymp

[don g]

I have a scar on my left foot,my bad foot with not much feeling in it.If I run my finger along that incision line it still tingles like the dickens,although the surgery was done some 39 years ago.My other scars that I have don't tingle at all.

Gymp

sounds likes the scar is right under a nerve that is firing off when you touch it. there is a place on my back the same way. I have a mylo At L-1

[Alvy]

I dont really know much about whats wrong with me
all i know is i have a mild form of spina bifida
and have to go for lotsa scans every year or so
any one want to explain more?
also with this case i have a small patch of hair at the base of my back
i want it removed? anyone else have this and kno whats safe

Hi there! I've got spina bifida occulta as well. When I was 15 months old, I underwent a major spinal surgery to repair the defect in my back. I also have a neurogenic bladder. Thereafter, I was pretty much a normal kid running around and all. Not until I was about 5 years old. It was when I developed clubbed feet somehow. Went for 3 surgeries to correct my clubbed feet @ 10, 14 and 15 years old respectively. Have always had to do clean intermittent catheterization due to my neurogenic bladder. Recurrent UTIs are part of my life as well, unfortunately. The bacteria's that resistant to the extent that I've to be admitted into the hospital for IV antibiotics just for a UTI. In addition, I technically only have 1 kidney because I was born with 1 normal sized kidney and 1 smaller one. The smaller one is not functioning at all.

I suppose if like all other have said, you're one lucky girl! As with occulta's meaning, the defects are hidden. They might pop up later in your life. You have to know this in case it hits you in future, at least you'll be somehow or rather prepared.

Hope that helps! =)

[kcncmom]

I dont have scars from my SBO, at least not yet, but as the others posted I have a scar down my breast bone from open heart as a child (age 13) it bothered me then but now, I consider it a badge of honor. I lived through it. When I should have died in my sleep, I know live and breathe each day. Its all how you look at it and yourself. I wouldnt want the scars but if it keeps me here and keeps the pain minimal...its just a shell - I wont need it on the other side. :)