daughter in pain-HELP

[Guest guest]

Hello,

My 4 1/2 year old daughter ()had surgery for tethered cord in 1998. She

has had a history of severe back pain since at least age 2. She also has had

bowel and bladder dysfunction which has improved somewhat since spinal

detethering. When she had her detethering the neurosurgeon found that her

arachnoid was thickened consistent with arachnoiditis. The doctor wondered

if our daughter had previously had meningitis--not to our knowledge. Anyways

the doctor did not seemed concerned about it.

However, has been having worsening symptoms the past 6 months with

increasing back pain, abdominal pain, headaches and neck pain, tinnitus, arm

and leg pain, extreme irritability, etc. The pain is becoming more severe

and more frequent and involving more parts of her body. She also complains

of her back,etc being " hot " . She had an MRI which was read as normal. We

just recently got a copy of it. In the MRI her neck is hyperextended. In the

sagittal view it is very difficult to see where the foramen magnum is and if

there is any herniation however, in the transaxial view? ( a cut from ear to

ear viewing from the back of the head)it clearly appears that the cerebellum

descends through the foramen magnum and into the spinal canal.

We have just sent the films to Dr. Frim but he said it would probably be 2-3

weeks before he could review them. Our local neurosurgeon thinks we (the

parents) are looking for symptoms and that all kids have aches and pains

--she was not open to the possibility of chiari although we did not go over

the films or the current reseach with her.

Anyways, is in alot of pain which is causing many behavioral issues as

well. We are going to see a childrens counselor to assist us in helping her.

We are also to see her pediatrician next week to discuss what to do next.

Do any of you know much about arachnoiditis and the potential that this

could be causing her symptoms? Do these symptoms sound like chiari? Also, do

you have any good suggestions regarding pain relief? Any recommendations on

what we should do next? Do we just wait for Dr. Frim to review her films?

I was thinking about asking the pediatrician to order a full spine MRI

because I am concerned about a syrinx also--Or would it be better to wait

and see what Dr. Frim says?

Sorry this is so long. We just feel overwhelmed and don't know how to best

help .

Thanks,

Jane (Oregon)

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