Hi everyone,
I'm a newbie to the forum, although I have been reading through almost everything to gain an understanding of others experiences with this condition. It definitly confirmed what I had always suspected, that there are no two people alike.
I am 26 years old, and live in Auckland, New Zealand. I'm currently full-time doing a doctorate in clinical psychology, trying to juggle writing a thesis with clinical practice.
I was diagnosed age 12 with a 60 degree curve, and we made the decision not to have surgery because it wasn't causing me too much of a problem, and we didn't know whether it would be the right thing to do.
I had my surgery at age 20 (year 2000) just after finishing my nursing degree, when my curve was 70 degrees. I think the correction went to about 40 degrees, but I'm not looking at my x-rays right now. The correction was using an anterior approach with 2 rods, from T9 to L2. I have had ongoing pain since the surgery, but I did feel that it improved things for me considerably. The surgeon didn't get up as high as he would have liked in surgery because I had been in a considerable length of time. So at the top of the fusion there was still a portion that was un-corrected but it was only mildly curving and we crossed our fingers and hoped it didn't progress more.
Since then we have been waiting and watching, and I have been on regular reviews, and we have just been watching it progress. Now I am at the point where I have been offered surgery and am considering it, however am struggling with the decision.
The revision surgery adds another 3 thoracic vertebrae into the fusion, taking a posterior approach and using a graft from my hip. He has considered adding in one more lumbar vertebrae also.
The things I am considering are
1) I have pain at present, but I can live with it
2) I am only 26, and the implications of the rest of my life with or without this are huge
3) it is likely to keep progressing since if anything it has sped up in movement
4) it is better to have it now while my spine is still balanced, than later when it is too much of a problem to fix.
5) there isn't much bone to anchor more screws in, given my existing fusion with instrumentation.
I guess I don't have a question as such, but am interested in hearing from people who can help me make this decision. I searched through the forum and couldn't find anyone who had a similar experience with progression after surgery, although I doubt I am the only one. Also, I haven't been able to find any information through other means such as medical journals or online searching.
I'm trying to stay positive with this decision, it's just hard when there is no clear choice. Although it seems clear cut that it is progressing and I should stop it, I really am struggling with the thought of more surgery especially as the outcome long term seems so unclear.
I think that if I choose this surgery, it should be at the end of this year or early next year because there doesn't seem any advantage in waiting and watching it progress further, and it fits in best with my studies and plans for future children/career if I do it sooner.
I'll post my angles etc when I can.
I'm a newbie to the forum, although I have been reading through almost everything to gain an understanding of others experiences with this condition. It definitly confirmed what I had always suspected, that there are no two people alike.
I am 26 years old, and live in Auckland, New Zealand. I'm currently full-time doing a doctorate in clinical psychology, trying to juggle writing a thesis with clinical practice.
I was diagnosed age 12 with a 60 degree curve, and we made the decision not to have surgery because it wasn't causing me too much of a problem, and we didn't know whether it would be the right thing to do.
I had my surgery at age 20 (year 2000) just after finishing my nursing degree, when my curve was 70 degrees. I think the correction went to about 40 degrees, but I'm not looking at my x-rays right now. The correction was using an anterior approach with 2 rods, from T9 to L2. I have had ongoing pain since the surgery, but I did feel that it improved things for me considerably. The surgeon didn't get up as high as he would have liked in surgery because I had been in a considerable length of time. So at the top of the fusion there was still a portion that was un-corrected but it was only mildly curving and we crossed our fingers and hoped it didn't progress more.
Since then we have been waiting and watching, and I have been on regular reviews, and we have just been watching it progress. Now I am at the point where I have been offered surgery and am considering it, however am struggling with the decision.
The revision surgery adds another 3 thoracic vertebrae into the fusion, taking a posterior approach and using a graft from my hip. He has considered adding in one more lumbar vertebrae also.
The things I am considering are
1) I have pain at present, but I can live with it
2) I am only 26, and the implications of the rest of my life with or without this are huge
3) it is likely to keep progressing since if anything it has sped up in movement
4) it is better to have it now while my spine is still balanced, than later when it is too much of a problem to fix.
5) there isn't much bone to anchor more screws in, given my existing fusion with instrumentation.
I guess I don't have a question as such, but am interested in hearing from people who can help me make this decision. I searched through the forum and couldn't find anyone who had a similar experience with progression after surgery, although I doubt I am the only one. Also, I haven't been able to find any information through other means such as medical journals or online searching.
I'm trying to stay positive with this decision, it's just hard when there is no clear choice. Although it seems clear cut that it is progressing and I should stop it, I really am struggling with the thought of more surgery especially as the outcome long term seems so unclear.
I think that if I choose this surgery, it should be at the end of this year or early next year because there doesn't seem any advantage in waiting and watching it progress further, and it fits in best with my studies and plans for future children/career if I do it sooner.
I'll post my angles etc when I can.
Comment