I did have my rods taken out three years after surgery and am so glad I did...have heard too many stories of things that can happen if they are left in. If your doctor suggest having the rods out / do get a second opinion, but also make it a prime consideration...

Thanks so much for your reply. So, you think I should get a 2nd opinion for real? Is the surgery of taken the rods, was it as extensive as the first one? How long did the surgery take? How long was the recovery? I hope you don't mind the questions, I am just so anxious and nervous, I just would like to hear other people's experiences that have been through it. Thank you in advance for your help and patience.

Tammy

I just had my spine fusion on June 4th (see profile for details). I have rods on both sides the length of my spine (15+ years ago they only used one rod) and pins and screws (haven't had the nerve to actually count how many - I have my xrays on dics). I was told by the 4 doctors I went to for opinions that a lot of the adult scoliosis patients requiring surgery today are patients from the 1970s and 1980s who's surgery consisted of only one rod. They now know that one rod is not enough and these pour souls require new surgeries to fix the old surgeries. The research I did on my own confirmed this. A spine specialist is the way to go, get more than one opinion (I got 4) and I would suggest a scoliosis specialist that specializes in Adult Scoliosis as it is a world apart from child scoliosis. I was actually turned away from 2 other docs that said they didn't have the experience to help me - you gotta respect a doc who admits he's out of his league. And as an adult recovery will be much more difficult and time is of the essence. I'm now in month 5 and recovery can take up to 2 years. Best of luck to you and if you want to talk/type to me more, I'd be glad to hear from you.

Tammy,
The surgery to remove the rods is not nearly as long or difficult (at least for me) as the first surgery, but again my first surgery was in 1965 my second (rods out) in 1968). I would hope that things have improved immensely since then. I was only in hospital a few days, and in fact I was up and riding my horse again within two weeks. Finding a good doctor and family and friends to support you goes a long way.

Thanks to all who have replied to me, some advice seems uplifting, some seems a bit depressing. I probably will get at least a 2nd opinion but my 1st appointment is tomorrow and I will ask him if he is a specialist in adult scoliosis. Also, if the doctors do suggest having a procedure done, I am going to see about having it done in Nashiville because I live in AL and do not have any family here but I have an Aunt & Uncle in Nashville. I am scared to death of what he will say tomorrow. Does anyone know what else they can suggest/do other than any surgery? Again, thanks again for everyone's response
!

Tammy

I went through the same 12 years after surgery. Unfortunately I had to have another surgery. It was for the better. My spine was "corkscrewing"! They corrected the deformity last time. The rods are still in. Not sure if I will have to have any other ops. Thought it was over when I was 10. But Im sure you are much stronger person now and you can handle more than you know.

things are so different today, I almost hesitate to make comments...but my surgeon studied under Dr. Harrington and his opinion was that the only reason for the rods is to support the spine while the fusion is taking, he saw no reason, once the fusion was strong, to keep the rods in and so I had mine out and have no regrets in doing so. I also had calf bone used rather than my own bone...again many years ago...

Thanks again to everyone's replies, they have been very much appreciated. However, I have an "update". The ortho doc referred me to a spine specialist and HIS x-rays showed no shift of the rod so, that was a blessing. I like to think that God "fixed it" instead of thinking that the doctor read it wrong. *smile* Anyways, the spine specialist wants to do a milogram/cat scan. I was suppose to have had it done this week but I "chickened out" because of some horror stories I had heard and then found out later it was not like I had been told it was not as bad as it was going to be. (not as invasive as I was first told). Anyways, he wants to see if I have a pinched nerve and if so, depending on how "intensive" the nerve is, we will then go from there to determine what procedure to do to "correct it". I am still not crazy about having the milogram and who knows I may "chicken out" again B 4 my appt. LOL Again, thanks for everyone's replies and if any of you have had a milogram/cat scan done, what was it like for you? May you all have a happy little day!

Tammy

Tammy,
so happy to hear your rods have not shifted...prayers are answered...I have had both cat scans and MRIs done...nothing invasive...MRIs are just noisy but head phones help...also have had epidurals with light anethiesia and the epidurals really helped the pain...best of luck to you...if I could be there to hold your hand I would (just the mother in me...(my daughter is 37)

I have been thinking about surgery when I go back to work or getting my ssdi whichever comes first. I'm not sure about the infusion and rods, I've been 'hearing' a mixed bag on the rods and not really sure about the infusion. Does the infusion have to have the rods or will it work without them. I'm also not sure about the surgery itself as I am 39 yrs old.