Soo.. do I have surgery or not?

[fleeme]

Hey everyone, new here.
I'll start with my issues...
1. type 1.5 chiari with 14 mm descent
2. Basilar invagination
3. platybasia
4. cranio cervical  flexion deformity

and a craniectomy/c1 laminectomy 2 years ago. When I had the decompression we only knew abut the chiari. I had headaches, gait ataxia, dizziness, and some tingling in fingers. I was good for the recovery, everything was perfect, and then my symptoms returned. The were unchanged until now, when they are getting worse. Normally I live a semi-normal (but painful) life, but the past two weeks I've been all but bedridden.

There's a constant tightness that doesn't hurt unless I move of am bumped. Every time I move the headache flares and the room spins. The tingling is worse, I can't stand on one foot, I randomly stumble/fall. Sometimes at school I feel like I'm getting shots, a sharp/achey pain in my arms and legs and I feel like there's water on my legs. My neck is stiff and aches and hurts when I move it.

Acetaminophen is useless. I'm on tizanidine and meloxicam (mel. for unrelated issues), so no ibuprofen. PT-tried, did nada.

My NS says do a fusion and something else that I can't currently remember, I'll try to post it later. So now it seems, yes do surgery-but the thing is, I'm an active 14 y/o. I ride horses and I want to continue to do so. I can mostly ride now, just very painfully and I usually regret it later. My NS said there's a small chance of riding again after the surgery and that I might not even get better.

Anyone been in a similar situation? What did you do?

[selmaS]

  I wondered about the decompression as many Drs do one that they feel is less invasive but many times the benefits are short lived and the full decompression is required .....

Surgery for Chiari will always be the patients choice unless you are in a medical emergency situation then the Dr makes the decision for you.

A NS is fine ,but you want one that has their entire focus on Chiari and Chiari related conditions you want a true Chiari specialist not just a NS.

The removal of C1 is not a good idea, they only need to shave a bit off to make more room.....

I know it seems like a fusion may be needed, ,I was told the same thing and  am almost 8 yrs post op and still no need for the fusion....I really feel the neck exercises given to me post op helped.....and I do have EDS and tethered cord.....so to be able to avoid this surgery was huge for me in that my ROM was really bad b4 surgery and finally great post op....I did not want to limit yet again with a fusion,

[selmaS]

  Hi and welcome to the Chiari forum.

Are your parents also members of this forum?

So if I understand this, you already had decompression surgery with a laminectomy but no dura plasty?

If you need a fusion it is highly possible you also have Ehlers-Danlos Syndrome..it is one of the reasons Drs feel most of us even have Chiari....as it is the malformation of the skull....platybasia.....

First find out if having the decompression redone with a dura plasty might be helpful and IF you have EDS as it can also cause many of the same symptoms as Chiari.

Have you also had a second opinion by a Chiari specialist to see if proceeding with a fusion is what is suggested?

[fleeme]

Yes, I had an decompression but no duraplasty. I'm currently trying to get tested for Ehlers-Danlos, as my NS feels that it will affect how we proceed.

What I forgot to mention is that the decompression was not complete and will be finished during the fusion.

I've also gotten second and third opinions. One said that it's my choice but he recommended no, and the other wanted to do the fusion of the C2-C3 and remove the C1 entirely, which I felt was a little excessive.

My mother's friend is an adult NS and while he has not examined me, he has seen all of the MRIs and notes and whatnot. He recommended finishing the decompression with a duraplasty and the fusion as well.