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Can you recommend me some reading material, web pages, etc..of spina bifida?

Question:
I am 46 year old female who has just learned my problems are a result of spina bifida. All my life I had been treated for polio (post polio issues) ankle/foot surgery, bladder surgery, muscle transplants, physical therapy, canes/crutches, etc..

Severe back pain finally forced me back to the doctors (I avoided othopaedic MD's especially in my adult years since I associate them with failed surgeries and pain) and an MRI revealed Spina Bifida with tethered spine at L5, distal diastematomyella without menigocele, severe right L5 foraminal stenosis, and herniated disc. Amazingly, the disc was causing the immediate problem (severe pain) and the pain is on the left side, not the right :-)

Right now, I have no clue where to go from here. I have some new paralysis and muscle weakness had been ongoing -- I know that what has been damaged cannot be repaired, but I am now worried about what can/will happen to me in the future.

Any suggestions for reading material, web pages, etc..? I want to be able to make informed, intellegent decisions about my care/future and self-education seems like the best place to start. The notion of back surgery absolutely terrifies me -- having horrible past experiences with ankle surgery (triple arthodesis) and muscle transplants which lasted about as long as the casts remained on but the pain lingered forever.

I am currently using a cane and a low AFO on my right leg -- although with my back problems I haven't bothered with the AFO lately.

I have huge doctor avoidance issues (will try self-medication, magic pyramids on forehead, self-hypnosis, denial, etc...) and the discovery of a life-long misdiagnosis sure doesn't help. Rationally, I know (and just from reading) many of you have had the same surgeries and it is more likley the treatment would have been the same -- but I can't help but think if my spine had been untethered when I was 1 or 2 years old I might have avoided some of my pain/problems.

Did I ever have polio? Who knows now, since no records exist anymore as a result of a fire at my doctors office when I was a baby and we had to operate on anecdotal information.


Answer:
Talk to your local hospital or health clinic and get as much info as possible.I am not sure where you live, but in Australia we have Spina Bifida Associations in each state, and they are a very good source of info. I am 45 and have Spina Bifida and I have found that you cant have too much information because as you know these little things pop up from time to time



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