Cervical tumor and fusion

[susan]

I keep writing the question and then deleting it because you guys probably discussed in the past. So if you did on the old site, sorry.
I was told there was a possibility I might need a second surgery to fuse my spine in the future if my vertebrae don't stabilize. On my last spine xrays, there was some movement at C3. My surgeon said they initially don't do a fusion, but wait to see how it heals first, but some people's spines don't like not being hooked up like they were originally.
I was wondering what the experience of the C spine people out there, did you need additional surgery for spinal fusion? If you did was it as bad as the first surgery?
I had really been worrying about it, but then I found out it wouldn't be for at least a year after the first surgery (I wasn't ready to face surgery again just yet) and also that he would do the surgery from the front instead of from the back of my neck. Going in from the front has it's own issues, but from what I was told it's is not as painful as the approach from the back.

Thanks,
Susan

[Linda51]

Hi Susan,

I'm a cervical spinal fusion survivor of almost 14 years. My first surgery was exploratory surgery with a biopsy. 2nd surgery was 2 months later to get the tumor out or almost out since it was an ependymoma and not an high grade astrocytoma with a fusion. The reason for my fusion was the tumor had been there for so long the bone was eroded so they had to take that bone out and replace it from my own hip bone. Dr. Fessler at Shands Hospital in Gainesville, FL at that time was going go through the front but my Mother had some questions about that and before my surgery he had talked to his colleauges and they thought it was best to go in the back through the same incision. I was happy about that and the second surgery was a piece of cake. I had no pain from taking the hip bone out except the time I would get up out of the bed but other than that no problem. I always told everyone it was due to me having plenty back there. I have read from other spinal forums that those who are skinny had more pain. All I know the hip surgery was the easiest surgery I had ever had.

I can only speak from my experience I did so much better the second time around. With you only having the spinal fusion and not any tumor removal you don't have to worry about them going into your spinal cord so that is a plus for you. I am fused from C2-T2 and it does come with the pain. I have only a little movement in my neck at C1 other than that no muscle control. In 2005 I finally went to an Chiropractor for the first time since my surgery. He did some massages and some manpulation and I was able to get some muscle relief which felt good but I stop due to the fact I was having some problems with my hand on the left side which is my good side and by stopping the treatments for a while my pain went away in my hand so I never got any more treatments. He told me I needed treatments for the rest of my life but my body thought different and I have to be cautious in my case.

When I drive I have to have a longer mirror in the front since I can't turn my head. It very painful for me if someone is behind me and they are caring on a conversation. If I was in your shoes I wouldn't have the fusion unless it was necessary. If I tap on my plate in the back I can make electricity go down my body. At times just taking a shower with the water pressure hitting my neck it can cause jolt of electricity go through my body. Having mammograms and thyroid tests can be a pain as well because I can't get in a good position for them to get the best results.

I am glad they went in the back since the doctor could messed up your vocal cords and your food tube. But life has it on risks so you never know. I hope you don't have to go through this but if you do I'm sure you will do fine. Since my fusion I have been call the bionic woman just can't do everything the bionic woman could do in the movies.

~Linda

[susan]

Wow, you are still getting the jolts 14 yrs later! I was hoping they would eventually go away. I'm still learning about this crazy world of SCTs. I still get them when I put my chin to my chest after I haven't done it for more than a couple of minutes.
I found the incision on the back of my neck to be incredibly painful, although I am beginning to realize that the neck pain I have now isn't from my incision, but from my cord.
I have 2 plates holding the backs of the vertebrae in place at C2 and C3 now, but my vertebrae aren't fused to each other. I'm hoping I don't need that for the reasons you described, not being able to turn your head to look over your shoulder. I have always done aerobics, yoga and pilates and I wouldn't be the same if my neck can't curl, although I know you should just do what you can do with no apologies.
I need to get it in my head that my life and my body will probably never be the same again. That's not neccessarily bad, it just is the way it is. That's life.

[bobmiami]

May I suggest the book HOW DOCTORS THINK, by Dr. Gerald Groopman, M.D. In the index 'spinal fusion' is referred to 9 times.

Dr. Groopman's book makes the careful point about how Doctor can and do make errors and how patterns occur.

He illustrates in this is several ways, and makes good use of case studies, including his own. He had spinal fusion, as a patient, and seems to make it clear he would not have done it, if he knew THEN what he knows now. He speaks of questioning the Doctors recommendation, which he did not do at the time.

All cases are different. His was not tumor related. However, you will learn quite a lot about spinal fusion from his discussion in this book.

Bob

[susan]

I did read "How Doctors Think" last year prior to my diagnosis. It is a great book. I think he had lumbar fusion for pain from lumbar stenosis which is a whole different thing than neck surgery for instability.
I'm a nurse care manager. I was rounding with my team last fall and between patients I was talking about my numb finger and thumb. (these were transplant surgeons that don't do back surgery) They were telling me that cervical spine surgery usually does have a good outcome, but that lumbar surgery patients usually have continued pain and problems. They were saying that they would have cervical surgery, if they had a disc problem, but not lumbar surgery. (I thought I had a disc herniation at the time, but my numbness turned out to a whole different monster and I had no choice regarding surgery).
I don't think I'll have much choice if I continue to have movement in individual vertebrae. It leaves you at a higher risk for spinal cord injury if you are in an accident or trip and fall, etc because the vertebrae could be knocked forward or backward.
Have you read either of Atul Gawande's books "Complications" and "Better". They are excellent looks into the mind of physians as well.
There is a good book about the whole lower back pain thing by a Dr John Sarno (I can't remember the name of the book), but he has a whole theory of chronic back pain being the result of unresolved emotional issues and stress. Believe it or not I heard Howard Stern talking about it years ago and ordered it online when I couldn't find it in a store. He too, is leery of lumbar spine surgery.
Thanks for your input!
Susan