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Posted By : pmdancer - 8/12/2016 6:43 AM
Hi CP members,

I am a new member. I have survived 3 multi level spine fusions and have been under PM care for many years, taking fentanyl, oxy, norco & diladid, muscle relaxer, etc now.

I am looking for anyone who's had fusion above C3 as I consider a C0-C3 fusion. Without it paralysis is likely imminent. With it, paralysis is still possible. It is a long & intense surgery, 12+ hours, with an intense recovery. Any experienced members here?

I've read many posts here and appreciate your extensive experience and sharing. Please no "think fusion" or "wellness" advice. It is well meaning but not practical or helpful when facing surgery decisions.

Thanks much, Karen

Posted By : straydog - 8/12/2016 10:24 AM
Hello pmdancer & welcome to Healing Well. Have you had prior cervical surgery? I am guessing this C1/C3 surgery is something that will be done not too far off. May I ask why its a 12 hour surgery, that a long time to be under.If you prefer to not answer that question no problem. Depending on how many cervical areas that are already fused will have a lot of bearing on this pending surgery. One of the biggest issues I can think of is losing more mobility & range of motion. We have had numerous members come through here over the years that have had multiple fusions of the cervical spine. Some did well, some not so well. Thats the gamble we take when considering any surgery.

I do hope this surgery will be a success for you. Keep us posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : pmdancer - 8/12/2016 11:36 AM
Thanks Susie,

I've had 3 multi level fusions already, cervical & thoracic. Mobility is not a concern as I have none. My concern is stability, keeping paralysis & the wheel chair at bay.

12 hour surgery because it will include neuro, ortho, & ENT surgeons. They will go in through the roof of my mouth in addition to posterior work. Transfusions are in the plan.

I have been told there is a chance of paralysis. Hoping I can find someone who's had fusion above C3 with a success story.
Its rare to have a fusion above C3.

Posted By : Abilene - 8/12/2016 4:56 PM
Hello and Welcome,

There was a woman on here briefly who had those same fusions and was an active business woman, in spite of her limitations. I think her surgery was also through the roof of her mouth. I don't think she started any discussions, just joined in some of the others. I've been searching but have not yet found her comments. I will continue to look and let you know if I'm successful.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea;
Thankful for my husband of over 40 years

Posted By : Abilene - 8/13/2016 7:58 AM
Found it! CaryF speaks of her surgery after the fact, I've not yet found her earlier comments closer to the surgery and recovery. You can read what advice she gave to Pinky Blue by Searching for this topic dated 12/8/2015.

Upcoming 5 level

You can also Search for CaryF to see other posts she made on other subjects such as GERD.
Hope this helps you!

Post Edited (Abilene) : 8/13/2016 8:03:30 AM (GMT-6)


Posted By : pmdancer - 8/13/2016 8:36 AM
thanks Abilene! most helpful, there is hope. just what I needed!

BTW - there is a C0, it is the odontoid. When fusing above C3 all discs, C0-C3, or what's left of them must be fused. this is my understanding.

Karen

Posted By : straydog - 9/10/2016 9:45 PM
pmdancer, just wondering if you have a surgery date set?
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : pmdancer - 9/11/2016 9:11 AM
no surgery date yet Susie, thanks for asking. I am in the process of getting 2nd opinions, more tests, insurance auths, etc. Maybe this month, maybe Oct........... I want to be extra prepared for this surgery, if that's possble. Even though I'm an old hand at fusions this surgery is especially complex & serious. I now understand why most cspine fusions start at & or are below C3.

Its hard not escalating the anxiety I feel but the surgery will improve my cspine stability, keep me further away from a wheelchair, I hope.

I am in much pain & numbness, its time. Thanks for thinking of me.

Posted By : straydog - 1/30/2017 7:47 AM
pm, I noticed on another thread you have surgery coming up I believe next week. I wanted to let you know you will be in our thoughts & prayers for a successful surgery.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : piperbill - 6/20/2017 12:12 PM
been a member for a bit so ill get right to it. had a C0 to C7 fusion with rods and screws etc. zero ROM and 14 hours in surgery, same deal as was headed down to the bottom without the surgery so was a no brainer for me to take the risk. would do it again in a heart beat. been 18 months now and other than a headache once a week, (need a muscle relaxant for it) I regained most all of what I was in the process of losing. I am 70 years old, work as a powerplant mechanic and am a volunteer rescue diver for the search and rescue team here. With no ROM have to do some very creative things to accomplish what I want to get done and do a lot of risk management. Virtually pain free and enjoy playing bagpipes. After surgery was painful for about 4 weeks and was back to work, light duty, in 3. totally awesome what a new lease on life will do for you if you make the choice to embrace it. Its very scary but in my own case very worth the risk. I wish you luck and blessings on your journey. take care piperbill

Posted By : straydog - 6/20/2017 8:30 PM
Hello piperbill & welcome to Healing Well. Wow, what a story you have to tell & I want to thank you so much for sharing it here. I personally love it when people will post on a public forum about their success with any type of surgery. We tend to only see people that did not do well for whatever reason. Your story will surely help someone else needing this type of surgery.Thousands & thousands of people read the posts here at Healing Well and you will help someone.

We have not heard from pmdancer since the above date. I do hope all is well with her. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

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