Fw: craniocervical fusion **cross-posted**

[Guest guest]

Greetings everybody. Hope you are all full of Christmas cheer. You have all been

dealing with my confusion for ages and I appreciate that. I feel like the whole

world has changed and no one told me. Anyway, I did want to say thank you for

the kindness and understanding. I do rely on you guys because (of course) no one

else understands.

I need to sort of poll the group: The doctors at TCI say I need a fusion.

Nazli McDonnell says I need a fusion. My doctors back home, that my insurance

will pay for, say I don't need a fusion but they can't tell me what is causing

my symptoms. It has gotten so bad that I am almost ready to go ahead with the

TCI fusion, even though it will take me many, many years to pay for it.

My question is; has anyone had a bad fusion or one that they considered a

waste of time and pain and money? While my tethered cord release didn't yield

the hoped for results, I knew beforehand that the nerve damage might be

permanent and that it could retether. I want to know if the fusion will relieve

enough headache pain and nausea and neck pain that I won't still have to be

stoned on pain killers all the time? I would also like for the orthostatic

postural hypotension to stop enough that I can feel like being on the go again.

As it is I am always struggling to stay upright and moving. The other symptoms

are very frustrating, especially the blurry vision, but they aren't taking all

the living out of my life.

I am losing so much ground physically due to not being able to be even

remotely active that my muscles feel like they are shrinking before my eyes. I

feel like the time has come to do something before I completely lose all my

strength. I know that the longer I wait, and lay here, miserable in my bed, the

harder the surgery will be on me.

Please, anyone, everyone, I need your stories. I need your input, either

way, because I have got to make a horribly tough decision.

Thank you so very much!

Lexie

[Guest guest]

Hi there -

Have you tried appealing for coverage at TCI?

I had the fusion and it has helped so many symptoms - so I think it would be

worth your time and money.

But you should consider trying to get coverage for the surgery!