Re: Craniocervical Fusion Surgery

[Guest guest]

I went for a consult for possibly being fused but they said I needed the spinal

cord stimulator and hoping to see if it will help with my pain,headaches, some

nerve problems and pressure. Right now they said there was no need for the

fusion.

 

 

  & Herget

________________________________

To:

Sent: Thursday, April 26, 2012 3:01 PM

Subject: Craniocervical Fusion Surgery

 

Hey All,

I had met with Dr. Bolognese and the results were anything but favorable. The

scan Clearly shows that I have a retroflexed ondontoid. They issued me a CTO

collar and a sdtandard collar for trips. I have severe numbness in my legs,

nausea, and neck pain and headaches.

I have been decompressed, and shunted. I just feel like I have been defeated by

this damn disease.

Dr. B. said that at .8 they recco you have the cervical fusion surgery. Of

course, I have .837! It is clear as day. My ondontoid is curved and

compressiong my brain stem. The surgery is serious and I just dont think that I

am strong enough to deal with another surgery.

Can anyone tell me, if they know of anyone that has had this, that I can talk

to? I received emails from family members that said their loved one had

it....but, I need to talk to someone that has been through it. They say it is

very painful..... A long recovery and I will loose 40 % rotation. Uggghhhh!

Any advice would be greatly appreciated.

Thank you

[Guest guest]

I have had the fusion and comepletely understand the fears you are feeling. I

remember just before the surgery, I was in panick mode and was ready to back out

of it. I have a retroflexed ondontoid as well. The fear of not being able to

rotate my head was so very scary. But after talking to the Drs at TCI I was

feeling more optimistic and went forward with this surgery. It was a difficult

surgery, almost a week in the hospital but today, about 4 years later, I have

adapted very well. My big fear was driving after, not being able to turn my

head. But I do just fine. I use my mirrors and also have adapted to turning my

body at the waist if I need to turn.

On a negative note, it has not helped me in reducing my symptoms. I really have

not had much improvement but the Drs did say they can scrape away the panus

build up but another surgery for me at this time is just not an option. If

someone asked me if I would do this again if given the choice, I would say yes

because even if it hasn't improved my symptoms, I do have hope that by lifting

my head up, and relieving those nerves that were being compressed, my best hope

is that I have halted the progression of this disease.

I also want to mention that I had symptoms for over 20 years before I was

diagnosed. I was in y early 20's when they started. Of course, being told that

it was anxiety related. When I was finally diagnosed in my 40's, I knew that

there may be permanent damage to my nerves from many years of compression. So

the fact that I don't see much improvement after the fusion may simply be I

waited too long. Who knows. lol

But the one thing that has helped me in dealing with this and having very little

movement in my neck now is humor. We joke in our family alot about it. My kids

tap me on the back, then turn away so by the time I turn my body to see who

tapped me, I have 3 people smiling at me saying " figure it out Mom " Sometimes we

have to find humor in the tough things that are thrown our way. It softens the

burden If you need to talk to someone about the procedure, I would be happy

to share my experience with you anytime. Hang in there!!