Hi, there,

I just finished reading about several people who have had multiple spinal fusions and am in that category. There are quite a few who have had it done--and I wonder the reason that it occurs in some of them. I am "hyperelastic"--having something called Ehlers-Danlos Syndrome---have "snapping hip syndrome" and as a little girl my dad , teasingly, said he was going to sell me to the circus (could put legs up behind head, a leg up to rib cages, sublux my elbow joints, etc.)When I was young, little was known of the syndrome, which in certain "types" can involve internal organs, thankfully not me. Now, many physicians will counsel a difficult cast NOT to have children if a female and that I can see--- as the birth, while usually easier than the normal female is easy-- what one goes through later due to the stretch of ligaments, muscles and tendons, can cause problems later on. As of now I have had 14 spine surgeries (12 spinal fusions, 2 laminectomies) and am facing another one Sept. 3, which will re-fuse L4-5 and also fuse both sacroiliac joints in one procedure.

One thing that I will say, early on: one has to come to the conclusion on one's own. In other words: YOU have to make the decision and no one else. It is you who has to decide that if it doesn't help you that much, you have lost nothing but time, possibly. If the doctor can honestly say to you that he will not make you worse but MAY make you better, that is about the best once can expect from a surgeon and that may be what is enough for you to hear to go ahead and have it done.

My "Big Kahuna" surgery was in 2000 where 5 former fusions were removed (drilled out) as they were in bad shape, and those final 5 levels had laminectomies, plus two levels above all that, in the thoracic area (L10-11 and L11-12) were given laminectomies, Then, the surgeon put in 14 cadaver bone blocks, 14 pedicle screws and 2 long titanium rods and fastened well. The procedure was 10 mins under 12 hours and my 2 incisions (one in front and around to back) measured close to 23". It was done 600 mi from home and in 11 days I flew home. I don't remember much other than pain for about 2 weeks. At 6 mos I felt slightly better than I did prior to surgery and it took about 18 mos to say that I truly was better off. I lost one thing that was hard to handle and that was the ability to bend at the waist--which means a person better have good knees! But, I learned how to get around it!

I''m writing this to explain again that is up to you how much it is disturbing your life. If it is really changing your lifestyle, then maybe you had better go ahead. If you think you can alter your lifestyle to accomodate what you're going through , then that is your answer. It is a very personal thing. Your spouse has a part in it as well. Mine was with me in my decisions, which helps tremendously.

I've now gone 8 years since what I thought would be my last spine surgery. I'm facing it again (the ones above were all singles, except for the last one). This surgery will take 3-4 hours and I 'm assured I will feel much better so I am taking that risk. It is up to you all to decide what your risk factor is--and go for it. Some truisms: you are not alone. Only you can make it work and follow your physicians orders. You must take it on as an adventure--and you MUST keep your sense of humor--or you're "toast!" Best of luck!

I have had cervical fusions from C5-T1. Three different sugerys. The last fusion was done 2009. Now I need C3-C5. I have been told by my Pain Doc that the surgery can cause more problems. So has anyone had this many levels fused? If so has there been any pain probems in the future?

thanks

ssheehan