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Thread: How many of us here with Spina Bifida?

  1. #1
    Senior Member canuck's Avatar
    Join Date
    Mar 2003
    BC Canada

    How many of us here with Spina Bifida?

    Besides me & Shantanu?

  2. #2
    Senior Member wheeliecoach's Avatar
    Join Date
    Dec 2005
    East Haven, CT
    I have a form of Spina Bifida (occulta). I injured that area so it is contributing to my issues, but I have a progressive spinal cord disease that is more the problem. My roommate has Spina Bifida...the most severe kind (I would try and spell that word...but I would butcher it). Her lesion is at L1-2. Mine is at L4-5.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  3. #3
    Senior Member Foolish Old's Avatar
    Join Date
    Jun 2006
    Florida Keys
    SB 4 me.

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  4. #4
    Senior Member JimD's Avatar
    Join Date
    Dec 2001
    Long Island, NY
    SB occulta with tethered cord. Had bladder issues as a child, but there was no impact on my ability to walk until I was in my late 30s - now use either crutches or a chair.

  5. #5
    sb occulta here am 27 and only found out a few months ago
    found out had sb at 17 and was told not to really worry about it
    have several issues when i was a child and still wasnt picked up
    and having problems with legs now and backpain as the opening has gone wider
    and have 2 crushed discs L4-L5 L5-s1 am going to push doctor to see a specialist for first time to see what is happening
    and if my disc problem is caused by the sbo

    i have just came across a mirc chat channel for spinabifida suffers to chat
    the details are
    port 6667
    channel # spinabifida

    hope to be able to talk to others and find more info
    Last edited by commy; 02-24-2007 at 01:05 AM.

  6. #6
    1 quick question should i be seeking specialist immediately as i wasnt told i had spinabifida till i was 17
    i used to have siezure and passing out fits as a child wherei would go blue around my lips
    and have severe headache that would pound and i couldnt stand anyy light aswell
    so should i be seeing if i had water on the brain as a child or not really something that should be concerned about?

  7. #7
    I have SBO, TCS, diastematomyelia, arachnoiditis, hydrosyringomyelia, -- SBO and diastematomyelia are at L2, but my paralysis is now considered T12.

    I didn't know I had SB until I was 21, and was in a car accident (did the xray in the ER).. they said, "you didn't tell us you had spina bifida." I was like, "spina huh?" They told me not to worry about it.

    3 yrs later I started having a repeat of the back pain from the car accident and headed to my neuro (that I already had for a different problem), and asked for a epidural steroid injection -- what they did after the MVC -- that fixed me right up. But b/c he knew about my SBO, he wanted to get a MRI, "just to be sure" it really was nothing. Well, I carried my films up to him and he told me my pain was from the TCS and diastematomyelia and to go see my neurosurg (also from a previous problem).

    So untethering #1. 4 mos later, pain returns. Neurosurg tells me it is "medically impossible" to retether that quickly. I eventually find a pedi neurosurg, who confirms the retether. Surgery #2 is 1 1/2 yrs after surgery 1. I lost a little leg function in one leg, but got it back really quickly. I was still in PT, strengthening my legs, when I suddenly started losing function in both legs. I went from walking normally to AFOs&crutches in 2 mos. MRI showed the hydrosyringomyelia. Surgery #3 to decompress the syrinx left me paralyzed from T12. So, I'm obviously a full time chair user now (KFOs and crutches just aren't practical as a mode of transportation)!


  8. #8

    Adult Dx NTD -- feel like you fit in?

    As I was reading through all the replies, I noticed how many people were Dx with a form of a NTD as an adult.

    Particularly after my second surgery, when I began facing mobility problems (and issues other than just pain), I felt like I didn't quite "fit in" with the traditional SB support groups -- most of the people there were 1) parents or 2) adults that had SB their entire life, so had no idea what it was like to live a "normal" life up to a point and have it taken away.

    So, I tried the SCI support groups (afterall, that is what existed where I did my inpatient rehab). But, it seemed like each one of them had their "I'm so glad to be alive" story b/c whatever event caused their SCI (for the most part) also risked their life when it occurred. So, they all shared this same, "I'm just thankful to be alive, even if I am paralyzed" story -- that I just didn't share. I walked into surgery (albeit not very well), and didn't walk out... and by no malpractice on the part of the surgeon, so I didn't even have a nice fat settlement to go home with. Not to mention my state has a Brain and SCI Trust Fund that they all qualify for (not to mention all these various private funds. If you go to their web pages, most of them even say "If you have SB, don't apply." Well, as far as my state fund goes, I don't know about the rest of you, but I was going right along and having that surgery and coming out paralyzed was pretty freaking "traumatic" to me!

    Anyway, a little off subject -- but I was wondering if any other adults Dx with NTD as an adult also had that feeling that they "didn't belong" in other support groups? (don't get me wrong -- I have gone, made friends, and found support, but have always felt a little "different" from everyone else).


  9. #9

    Many of the SB clinics will see patients even as adults. They should also be able to give you more insight into what is going on with your back. Even if you can't get to a SB clinic (go to and look for clinics), I would look for a pedi neurosurg in your local area that specializes in NTD... even some of them will see adult patients.

    Have you still had problems with headaches and/or seizures? On another list, we were discussing how our spinal fulid headaches (not from hydro, but headaches caused by CSF from other causes) differed from headahes caused by other causes (ie: migraines). I don't know if it is in all cases, but the concensus in that group (just based on the members in that group) was that the pain was very similar, but w/CSF headaches didn't cause the light/sound sensitivity that other headaches have. Also, that CSF headaches are more sensitive to head/body movement. ie: either get better or worse either by standing up or laying down.

    There are some kids that have seizure disorder and out grow it (you didn't mention how old you were when you had the last episode). But, based on your history, as well as the new problems with you back, I would probably try to get a full brain/spine MRI and get it reviewed by a pedi neuro/neurosurg.


  10. #10
    sorry been a while since last posted
    one thing that gets me is why is it sbo sufferers get told its nothing dont worry about it
    i was 17 when i was told this and now at 27 i am told its a wide gap
    at 17 was told its small gap its nothing
    so does sbo get worse as we age?
    when i was around 10 or so sammy was when i used to have my passing out and siezures
    thats roughly when i had my last one
    and my headaches arnt as bad or frequent as when i was a child
    when i used to pass out i would fall totally collapse and not breathing going blue around my lips
    and my mum said i had convulsions or shaking real bad a few times on the floor
    i would normally come back and not remember what happened or sorta why i was down
    i slept heaps as a child and still do today a few times i slept for ages and as a baby wouldnt wake for a feed but didnt see docs then
    all doctors put it down to was i may have epilepsy when i am older
    when i was young i did have wires and pads on my head testing and they did see something wrong but they werent sure that i can recall
    i just cant believe how many pple are told with sbo its nothing and it turns out to be something
    i live in australia and my gp atm got me to get a ct scan on my back done 264 pictures still waiting on results
    and to see a specialist i need a referal here
    and the gp ordered the ct to see if its worth sending me to specialist
    i cant believe how many doctors believe sbo is nothing to be concerned about
    anyway if anyone want to chat about it my msn is
    i have my ct,xray pictures on my pc so if u wish to see them aswell
    i just hope they do come to the point in relising that sbo is something to be cautious about
    and to get it checked out
    just hope i can find out what is happening soon

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