How do you make the decision on whether or not to have surgery?

[susancook]

I'm with Karen Ocker on this one. You need a really thorough investigation of what's going on. I would be surprised if 36 degree curve alone would cause that much pain. Find one of the VERY BEST doctors to check you out. I'm sure Linda can recommend someone in your area. Good luck! I'm sorry you're in so much pain.

Best,
Evelyn

Thanks Evelyn, I am confused also. The most sense that I can make of this is that I have "Degenerative Adult Onset Scoliosis" which must be different than scoliosis that progresses from younger years. While my curve is smaller...what small?, I have significant pain. Go figure. Dr. Sibell at OHSU thinks that some of it is from arthritis in the spine, so he is planning a "medial lumbar branch block" x 2 and if that helps, then a Radiofrequency Neurotomy. As I understand it, that can provide relief for 2-15 months. That will not address the pulling pain from the "S" curve pull on the muscles that gives me the burning R sided muscle pain. I see Dr. Hart, surgeon at OHSU and Dr. Sibell, a pain managment specialist. I'm not rushing into anything except physical therapy, TENS unit set on IF, pool therapy, pain management "Mindful pain management program", and getting on line here and finding support. I see Dr. Hart the surgeon next week and have at least 18 questions to ask him and then followup xrays in the fall to "follow the curve". I really like him and have alot of confidence in him. If I do contemplate survery, which may very well be in my future, I will probably go to UCSF for a second opinion. I had natural childbirth, so I tolerate pain. At that point of contemplating surgery, I probably can barely crawl and will be in constant tears, so I'm not sure that a second opinion would be needed. Thanks for your support.
Susan

[susancook]

Jess,
That is what my local surgeon told me,'as well. But it seems like, just anecdotally, most people with significant pain do better with the surgery. Maybe Linda knows if there are any academic studies to support this?

I fully believe that in scoliosis surgery, you have to have one of the VERY BEST surgeons in the country. When we were in Dr. Lenke's office this week, we met two other patients who had had revisions with Dr. Lenke because their local doctors messed them up badly in the first place.

So, my number one suggestion in making the decision about surgery is to go to the very top for advice. Lenke, Boachie, Lonner, the people in Linda's office, the Minneapolis Spine Institute, and I can't remember the name(s) of the great surgeons in Texas. There are more, of course, that I'm forgetting But ask Linda and find one of them! (Linda, maybe you should make a "sticky" with your top 10 or 20 list , or recommendations by geography?)

Thanks for your advice. Linda sent me a message, I don't know if it is on this thread or another that I posted, that Dr. Hart at OHSU was named one of the tope 28 spine doctors in the US. He does 200 spine surgeries a year, 50 of them are scoliosis, all of the scoliosis surgeries are adult. I agree with you totally about having a doctor that is a spine specialist, and not someone who does just one a month or so is very important. I wasted time seeing a neurosurgeon in Vancouver, WA. who does not do scoliosis surgery who gave me poor advice. I will probably have a second opinion if I decide to go the surgical route, and will probably go down to UCSF for that since I do not see any other major spine expert here in Portland, Oregon. Having said that, I have a lot of confidence in Dr. Hart and trust him. I have seen him twice and see him again tomorrow.
Susan

[mdtaffet]

Thanks for your advice. Linda sent me a message, I don't know if it is on this thread or another that I posted, that Dr. Hart at OHSU was named one of the tope 28 spine doctors in the US.

With a google search, I found that article; it is available at http://www.rushortho.com/pdf/Orthope...%20America.pdf.

Though there is no emphasis on "best", here is another list of 20 spine surgeons who focus on scoliosis -- http://www.beckersorthopedicandspine...g-on-scoliosis.

-- Mary

[susancook]

With a google search, I found that article; it is available at http://www.rushortho.com/pdf/Orthope...%20America.pdf.

Though there is no emphasis on "best", here is another list of 20 spine surgeons who focus on scoliosis -- http://www.beckersorthopedicandspine...g-on-scoliosis.

-- Mary

Thanks for the info.
Susan

[susancook]

Back to the surgeon [pun intended], and now it is up to me if I want to have the surgery to let him know. He said that I am a "good candidate for surgery". I asked tons of questions for which I wanted exact answers in a realm of what causes the back pain in a 65 YO back with arthritis, moderate to severe degenerative disc disease, and then there's the scoliosis [I didn't get exact answers]. It would be a massive surgery, T3 to S1 fusion. The "death risk" that he quoted was 1/200 and he said for long term, that 80-85% of people had less pain after surgery, 10 % had the same amount, and 5% had more pain after surgery. Maybe I'm unrealistic, but I don't see my current pain level or my disability enough to warrent such a surgery. The Pain management MD looked at my xrays and said that the edge of my rib cage was 2 cm from my pelvis on the right side. So, right now, thanks to everyone who provided input. I will continue w/ physical therapy and pain pills and have repeat xrays done next Jan to see if my curve has progressed. In the meantime, if my pain inceases to the intolerable zone, my quality of life is poor, or I am not able to participate in actvities that I enjoy because of pain, then I may call for another appointment w/ Dr. Hart to discuss surgery.
Susan