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
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.
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