Side affects of spinal fusion surgery

[Blondie]

Dear Dixie, I totally agree with you about having second thoghts about a surgery that can only provide 20% correction! I say find a different surgeon. It sounds like the one you've been going to has little bedside manners and clearly doesn't like to communicate with his patients. My dtr just had her spinal fusion 3 1/2 wks ago and she had very serious cardio-pulmonary complications that landed us 8 days in PCU. Every surgical intervention has very high risks, not to mention being in the hospital, period...(and I'm saying this because as an Rn I know how many things can and will go wrong by just being hospitalized). So, if you're having that feeling in the pitt of your stomach...listen to it please, and either find another surgeon or find out about alternative methods to surgery. I hate to sound negative about surgery, but 20% correction is nothing to warrant the risk, in my opinion. Good luck with whatever you choose to do and if you go with the surgery option, stay with your child the whole time she is hospitalized, and let everyone know you will be keeping track of every thing being done (I kept a log and demanded intelligent answers) I know if it hadn't been for this, my dtr might not have survived her post-op complications.

[Alison]

Hi Dixie

Ummm... I don't quite understand all the issues surrounding health insurance and what docs can and can't be seen under particular insurance. But would it be possible for you to go another doctor, one that you like, trust and has good bedside manner; because I agree, they may have really good qualifications, but if they don't have good bedside manner and you trust them, then its not a good relationship. My suggestion would be to try and find a scoli specialist that has experience in treating children with Down Syndrome and any other issues related to the Down Syndrome that your daughter may have.

Hi Dixie and Blondie

I'm sorry, I have to kind of disagree with you that surgery that only achieves a 20 percent correction is not worth the risk. I can understand if there is other issues involved such as Downs Syndrome, Heart Conditions, CP etc, because sometimes it is simply not worth the risk with all the other stuff. But I can't understand it for "standard cases" and "special cases" to a point.

Sometimes spinal fusion surgery can only achieve very little correction, largely due to little flexibility being left in the spine, and it simply can't be manipulated into that much correction. But the surgery often needs to be done for other reasons; such as to stop the curve progressing and to hold what's there; reduce the risks of "other issues" such as organ squish as curves increase; and if the curves get in a certain state, they can be very difficult to operate on. .

Here's my story for an example. My fusion was done when I was 13 from T2 to T11, and only a five degree correction (at most) was made, and that was better than we'd hoped for, it was essentially a holding fusion, to hold what was there. I still have curves in my back that are in the high sixties and high fifties/low sixties and will do so for the rest of my life. I would still pass all the tests for diagnosing scoliosis :-) And realistically me wearing a brace for 9 years acheived very little, except to hold what was there and play a waiting game until I hit puberty. My spine was very stiff with very little flexibility to achieve correction, and we were very lucky to achieve the correction that we did. But netherless we chose to go ahead with the surgery for many reasons; it had to be done because there was quite a bit of rotation in my spine and in time would have continued to rotate and effect my organs and general wellbeing. And my spine was increasing in curvature with no signs of decreasing.

Ultimately, surgery is a personal choice. I know my parents thought about it long and hard before it was done, and they were considering my long term health as part of the decision. I am not trying to say whether surgery is good or bad, but simply offering a different point of view.

I wish you all the best with your decision

Alison