The OTHER'S

I got a hold of a gal from a friend... Thru a friend... Thru a friend.
Thank GOD for FRIENDS RIGHT!?

I wrote her asking about the surgery that may be in my near future...
The craniocervical fusion...
And here is what she said...
(Just to help you understand what all is-will be going on with me)
(But keep in mind I refuse to have this surgery unless I am promised SOME relief and have it done at the Chiari Institute in New York)

Here is what she said... (p.s. I added" ((" for my own notes to help you understand how this may relate to me)

Hi Felicia,
I am happy to share my experience. I hope it can help. I had craniocervical fusion in August 2008 (3 years after decompression)((This is the surgery that I had this past July)).
I really struggled mentally with the decision of fusion surgery ((I feel the same!)). It felt so permanent. I worried about them putting my head in the wrong position. I took 9 months to think about it from the time they recommended fusion to when I finally scheduled my surgery.

When surgery time came, I felt very good about it and was totally ready. My surgery was tentatively scheduled for a Friday--we did invasive cervical traction ((scariest looking procedure-torture unit I have ever seen, this is the posted picture above)) on Monday to confirm that it would help my symptoms and so they could get images of the right position. They put me under anesthesia, screwed my head in the traction machine, then woke me up to see how I felt. It was amazing! ((Yikes, it sure doesn't look amazing)) Instant relief of the pressure-pain in my throat/neck. I could speak and breath easier. I was singing in there because it felt so good to push air out. I could move my shoulders better. They gave me water to see how swallowing was--so much easier. My vision was perfectly clear (I hadn't realized how bad it had gotten until I saw how good it should be)((Oh GOD this sounds amazing)). They brought my mom into the OR so they could gauge her reaction. She walked in and immediately starting tearing up, "It's Ave! I can see her eyes". (Like she could see the life and sparkle in my eyes that had been shrouded in pain for so long)((I know that I am ready for that feeling)). After that traction procedure, all my fears were gone. I couldn't wait to feel that good again.
Surgery was long: 7-8 hours, painful but much easier for me than decompression. My recovery was much easier than decompression too. But I was in really bad shape going into decompression. ((Nothing could be worse then that damn drain that had me in ICU for 8 days))

All those symptoms I got relief from in traction have stayed good after fusion surgery. The pain is significantly better. The pressure on my brainstem is gone so my entire body works better. Speaking and breathing continue to be easy. Vision is perfect.
Chewing and swallowing can still be challenging sometimes. The muscles in my neck, throat and jaw get pretty tired by the end of the day (but nothing compared to pre-fusion).

The only other symptom remaining is the muscle pain in the back of my neck, shoulder area, and upper back. I’m hoping this will improve as I gain strength (I am recovering from tethered cord surgery 2 months ago). I guess it could also be pain from having surgery in the back of my head twice. It would be a bummer if I’m stuck with it forever, but fusion and my other surgeries have totally improved my quality of life.

Before fusion surgery, I worried that it would be so stiff and rigid. I thought it would feel like wearing an Aspen hard collar all the time. It’s not bad at all. I’m fused down to C4. But I’ll be going through my day and pretty much forget that I can’t turn my head. I was already only turning with my stomach because it hurt too much to turn my head. It feels like no big deal. Some people will hang out with me for hours and not have a clue until I tell them.

The only other annoying things (not a big deal but I feel like I should tell you everything): I can feel my rods when I touch the back of my head. If I lay my head on a pillow and it’s right on the rod, I have to move positions. It causes pain. Minor inconvenience. The other is that I live in a pretty cold climate. When those rods get cold, it is a very weird sensation. Cold radiating from metal inside your body. Eeeww, but oh well. ((WOWZRS!))

I am so glad I went through craniocervical fusion. By the end of my thinking time, it didn’t feel like an option or a difficult decision. My body was getting worse and I couldn’t live anymore in that state knowing there was treatment I could try ((THIS IS SOOO ME!)). Now my neck definitely feels safe, secure, and supported. I love my rods, they have saved me.
Sorry this got kind of long. Please feel free to ask anything. I will try to respond as soon as I can.

I guess my main advice is to trust your gut. You know your body better than anyone.
Take care,
Ave


TRUST IN MY GUT!!! Thats all I can do...
Last night I prayed myself to sleep asking God to please reveal himself to me. To let me know what the best choice is for me. I am so weak inside and hide it all so well but I am ready to break down...

I have such an amazing support group I truly couldn't ask for more from them but I AM WEARING SOOO THIN...



::Giving way to that familiar ill::