lower back pain (Arnold Chiari Malformation and scoliosis)

[manders25g]

Here is my condition in a nut shell before I ask questions.....I was diagnosed with scoliosis when I was 8 (1988), from there I wore a back brace for 3 years until they finally realized the curve of my spine was not getting better, (58 deg), so I had a rod put in at age 11, using hip bone to accomplish the spinal fusion.

After 3 years they found that my spine grew crooked again, so another surgery was scheduled in June '94 with a longer rod being put in using one of my ribs this time for the fusion.

We thought all was well until '96 when I started having weakness on the left side of my body (couldn't close my left hand very well while playing softball), as well as closure and dialation of my left pupil. Tests were run (MRI of the brain being one of them) that brought the knowledge that I had Arnold Chiari Malformation. My skull was too small for my brain, therefore I had an unprotected brain stem...not to mention my brain stem was resting on my spinal cord so they believe that is what caused my scoliosis. They used cadavar tissue to enclose my brain stem. Has anyone heard of this?

I now have tremendous pain in my lower back and had an MRI done to determine if I have had any new nerve damage. The only thing is...because of the metal rod in my back...the MRI is not clear enough. The only way that the MRI can be clearer is most likely to have my rod removed so I am considering having my rod removed.

To add insult to injury, I have gone to several well known neurologists in the Dayton area only to be 'blown off'...the surgeon that performed my brain surgery in '96 moved to Florida and practically no doctor wants to even touch my case.

Has anyone out there had any similar issues? I'd like to hear from you...PLEASE!!

[PNUTTRO]

I don't know

These are just thougths. I'm not trying to advise, just asking questions that you may consider asking your doctor:

Why remove the rod for an MRI?
Why not a CT/myelogram?

With regard to doctors, have you only seen neurologists? Maybe try an orthodpedic surgeon? consider treatment outside your area? Docs at bigger medical centers see more patients with rare conditions.

[SandyC]

I agree with pnuttro. Instead of just seeing a neuro, try seeing an ortho that deals with adult scoli patients. You may have better results. I would also try to find an ortho that is with a large medical center or medical school. They would be more likely to be equip to deal with unusual medical problems.

[Carmell]

My thoughts about what you wrote...

In addition to an orthopedic surgeon who specializes in scoliosis, I think you should see a neuroSURGEON who knows about tethered cord problems. With having Chiari issues, there is a possibility of a tether in the spinal cord in the lower spine, even tho Chiari is a brain issue. You need to rule out a lower spinal cord tether. The tether could be from a lipoma, syrinx, fatty filum, or just anchored because of scar tissue.

You have a complicated situation. Try to find someone who deals with these multiple issues. I know there are specialists out there who can help you. It's just finding the right ones. Good luck.