spina bifida occoulta

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help im 23 and after going doctors printa of my dignosis a found out age 1 a was dignoesd with spina bifida occoulta and it been 22 years of haveing so backs and pains and bladder and bowel incontence am so worried going back to doctors feel let down what do i say i cant beleave i was never told not even my mother was told they put all my problems down to being ibs and was tested chrones but chrones was ruled out 

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  • Posted

    I can so sympathise with this, it took until I was 30 to diagnose!! I had a tethered cord and had it operated on but last year it retethered and I had to have another op. I have gone back and forth to the doctors with bowel problems and like you was just told IBS. Now whilst I do have some IBS a lot of my symptoms were to do with nerve damage from the lipoma. Unfortunately I now have bladder and bowel problems but am under the right care now. I go to a healthy bowel clinic and am currently having some weekly treatment to try and stimulate the nerves, I use a system called Peristeen to empty my bowel to stop accidents and have an appointment in March to get trained up to self catheterise my bladder. Unfortunately it appears that only in the last 10 years or so have doctors started to recognise symptoms as possibly related to Spina bifida. If I was born today they would automatically investigate as I was also born with a deformity that they put down to "one of those things", now A days they would know it was Spina bifida. Just make sure you keep pressing for the right treatment. Where are you located? I go to the Walton centre and Aintree hospital for my treatment.
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    • Posted

      im living in wigan a was dignosed age 1 but only just foun dout by reqeasting my records and im shocked i need go back and ask them why havent they said its not like i not been back and fourth in hospitals and drs with my bowels ect =(
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  • Posted

    Hello, I.just wanted you to know you aren't alone. After a lifetime of foot

    And leg problems, bowel issues and Incontinence, a bladder that never

    Worked, breathing issues......I was told by a disability doctor that it is

    Spina bifida. Either my mother.never knew or just never told me. She said it was because.she was RH negative. I am 53 and heard this news 4

    Years ago. I am falling apart more every day. If I had known I may have

    Been able to get.more real help. Now I fear it is too late. Just do all you

    Can now to stay as healthy as possible!

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  • Posted

    The NHS have a Low Priority Policy for Spina bifida Occulta .Since SBO can involve numerous problems including the neurological this doesn't make intelligent  sense .Maybe this is why all treatment here in the UK is directed at children & the cosmetic  .Since advances in medicine have involved stimulators why are not adults who are Low Priority have access to these and orthapedic hospitals for spinal research.surely this is discrimination  as I have also heart problems [ syncope] & neurogenic bladder .
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