Discussion:
Spina Bifida
(too old to reply)
Kokoro
2005-02-15 13:09:57 UTC
Permalink
Hi, I hope someone can help.

My Mother was born Spina Bifida. I dont know what type but she describes
it something

as if a vertabrae was missing or two were very misformed. she had a hole in
her back

and was unable to walk. She had an operation at the age of 5 to insert
pins into her

spine to correct the problem. Though she still had constant pain it was
bearable and

my mother was able to walk and lead a pretty normal life; three children
are proof of

that. She tells me though, post operation, from the age of about 7 she has
had very occasional severe pain from her back.

42 years after the operation, during a doctors visit, the doctor asked my
mother when her last back x-ray was.... my mother hadnt had an
examination, much less an x-ray on her back since the operation when she
was 5 years old. An x-ray was scheduled and the doctors said that her back
was enflamed and should be monitored for future problems and every six
months a new x-ray and examination should be carried out. That was a year
ago, and that doctor has left the surgury and my mothers new doctor has
never refered her again for an examination.

Two weeks ago My mother started experiencing severe pain in her back. So
Severe she is having difficulties walking, or moving at all. Another
doctors appointment was made and the doctor only saw my mother for five
minutes prescribing paracetamol and codine and said 'if it gets any worse
make another appointment'.

This is why I am asking on this group. I feel that a professional opinion
from a spina bifida specialist is needed and at least an examination. My
mother is upset and in constant agony. What options are open to us? We
live in Wales.


Thanks
Dinie
2005-02-17 11:48:21 UTC
Permalink
Hello Kokoro.
Our situation is realy different, because our daughter has SB in a higher
place than your mother, but I suppose that your mother has a tethered cord.
It means that the spinal cord is stuck and that causes the problems (can
damage the spine), to say it very shortly. I seems to me that your mother
should contact a doctor a.s.a.p.
Good luck
Kind regards
Dinie Steeman
http://home.wanadoo.nl/sabine-pukkiemukkie
Post by Kokoro
Hi, I hope someone can help.
My Mother was born Spina Bifida. I dont know what type but she describes
it something
as if a vertabrae was missing or two were very misformed. she had a hole in
her back
and was unable to walk. She had an operation at the age of 5 to insert
pins into her
spine to correct the problem. Though she still had constant pain it was
bearable and
my mother was able to walk and lead a pretty normal life; three children
are proof of
that. She tells me though, post operation, from the age of about 7 she has
had very occasional severe pain from her back.
42 years after the operation, during a doctors visit, the doctor asked my
mother when her last back x-ray was.... my mother hadnt had an
examination, much less an x-ray on her back since the operation when she
was 5 years old. An x-ray was scheduled and the doctors said that her back
was enflamed and should be monitored for future problems and every six
months a new x-ray and examination should be carried out. That was a year
ago, and that doctor has left the surgury and my mothers new doctor has
never refered her again for an examination.
Two weeks ago My mother started experiencing severe pain in her back. So
Severe she is having difficulties walking, or moving at all. Another
doctors appointment was made and the doctor only saw my mother for five
minutes prescribing paracetamol and codine and said 'if it gets any worse
make another appointment'.
This is why I am asking on this group. I feel that a professional opinion
from a spina bifida specialist is needed and at least an examination. My
mother is upset and in constant agony. What options are open to us? We
live in Wales.
Thanks
Kokoro
2005-02-17 13:12:04 UTC
Permalink
Post by Dinie
Hello Kokoro.
Our situation is realy different, because our daughter has SB in a
higher place than your mother, but I suppose that your mother has a
tethered cord. It means that the spinal cord is stuck and that causes
the problems (can damage the spine), to say it very shortly. I seems
to me that your mother should contact a doctor a.s.a.p.
Good luck
Kind regards
Dinie Steeman
http://home.wanadoo.nl/sabine-pukkiemukkie
Thanks for the reply. We've made another doctors appointment this morning
and specifically asked to see another doctor. We have to wait and see what
happens now.
Dinie
2005-02-22 13:13:38 UTC
Permalink
Hello Kokoro
How was the appointment?
Did you see a neurologist (I hope it is the right word, Í'm not so sure)
--
Kind regards
Dinie Steeman
http://home.wanadoo.nl/sabine-pukkiemukkie
Post by Kokoro
Post by Dinie
Hello Kokoro.
Our situation is realy different, because our daughter has SB in a
higher place than your mother, but I suppose that your mother has a
tethered cord. It means that the spinal cord is stuck and that causes
the problems (can damage the spine), to say it very shortly. I seems
to me that your mother should contact a doctor a.s.a.p.
Good luck
Kind regards
Dinie Steeman
http://home.wanadoo.nl/sabine-pukkiemukkie
Thanks for the reply. We've made another doctors appointment this morning
and specifically asked to see another doctor. We have to wait and see what
happens now.
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