Newbie w/ a success story

[jenafer]

Hi everyone,

I am so glad to have found this forum. I have had a very positive experience with spinal fusion surgery for my scoliosis. I hope that no one thinks I am gloating, because that is not my intention, but I wanted to share this story with those who are going through the stress and uncertainty of dealing with moderate/severe scoliosis.

I had spinal fusion surgery for a 42 degree thoracic curve when I was 13 years old. I had titanium rods put in and my vertebrae from T4 to L1 were fused.

I was a dancer my whole life and played the snare drum in marching band. I was able to return to dance and band in about 3-4 months, though I still felt stiff and not quite "back to normal" for about a year, I think. I was never super flexible (especially my back and hamstrings, which is weird for a dancer), and while I noticed a loss of flexibility, I still wonder if this was because of the fusion, or because I stopped stretching my lower back.

My surgeon told me that after a year post-surgery, I had no restrictions on activities. I returned to dance (but didn't do layouts or backbends) and band for the rest of high school. I never had any abnormal pain or complications.

Since high school, I have taken dance and yoga classes sporadically, and done free weights and other strength training pretty regularly. I even took up distance running and have run a marathon, a half marathon, and several 10-mile races! I'm fairly sure everyone's back hurts after a marathon , but I didn't have any particular problems because of the scoliosis or fusion.

I am 28 now, so it has been 15 years since the surgery. Most recently, I have taken up belly dance, and I have a fantastic but challenging instructor who has noted that some of my movements are limited, especially rib cage circles. I would really like to improve my lower back flexibility so that I can improve my dance ability. I may consult with a doctor to find out 1) how much more flexible I could expect to get if I worked hard vs. what I'll never be able to do, and 2) whether trying to improve my lower back flexibility significantly will cause problems for the vertebrae below the fusion. Any experience or insight with this would be welcome!

In any case, I feel very fortunate that I have not had complications and have not lost that much flexibility. Of course, everyone's situation is different, and I'm not saying that everyone with fusion should go and run a marathon , but in my case, I have been able to really push my body's limits and have been successful so far!

[Snoopy]

Welcome! Thank you for sharing your success story. My daughter's fusion is very similar to yours. She is fused from T3-L2, so it is great to hear what you can/cannot do. Jamie will be two years post-op next month and really, the only thing she can't do that she did pre-surgery is a regular sit-up. Her flexibility/mobility is somewhat limited because she too has very tight hamstrings. When she does her stretches, her mobility gets much better. However, being 15, she isn't interested in doing stretches, so she deals with it.

Congrats on the successful surgery!

Mary Lou

[BrianB]

That certainly is a wonderful story and helpful for those of us who have not yet had surgery. I have a cousin who's a P.T. and said that I would never be pain free if I had the fusion - that I would always have some discomfort, but from what I've heard from others, including you, is that it is quite possible to not have pain, even though each one of us is different.

Thanks for the great news, especially since I would be fused at almost the same place that you were!

[sweetness514]

Hi jenafer,

that's really something that you do so much physically and it's also amazing.

As far as your questions go, I'm not a doctor but I think you're doing great with advice from your dance teacher and also PT's can help you with knowing just how much you can stretch your body but I imagine you have done that quite a lot and well already. I think if the spine is fused, there is always going to be some limited mobility at some point. For the other question, I have read some people who notice moving their unfused vertebreas a lot can be helpful to keep fit, strong and flexible but they are at risk of taking more of a "beating" so to speak since your fusion can put pressure on them.

Take care.

[Karen Ocker]

Pain free after surgery

That certainly is a wonderful story and helpful for those of us who have not yet had surgery. I have a cousin who's a P.T. and said that I would never be pain free if I had the fusion - that I would always have some discomfort, but from what I've heard from others, including you, is that it is quite possible to not have pain, even though each one of us is different.

Brian B

I had a mega revision 4 years ago at age 60 and I AM pain free. I do feel odd discomforts with a new exercises but basically I'm great.

I hate it when less knowledgeable people make generalizations about scoliosis surgery. Maybe he was comparing it with out of shape disc surgery patients.

[LindaRacine]

That certainly is a wonderful story and helpful for those of us who have not yet had surgery. I have a cousin who's a P.T. and said that I would never be pain free if I had the fusion - that I would always have some discomfort, but from what I've heard from others, including you, is that it is quite possible to not have pain, even though each one of us is different.

Thanks for the great news, especially since I would be fused at almost the same place that you were!

Hi Brian...

I know plenty of people who have had scoliosis fusions who claim to be pain free. I think it's pretty unusual, but it's also pretty unusual to have no back pain if you haven't had a spinal fusion. Somewhere around 85% of all adults report occasional back pain!

With that said, you need to be realistic about your expectations if you're going to have surgery. While it's nice to hope that you'll have a good outcome and no pain, that's not totally realistic.

Regards,
Linda

[gayle]

i think its best to know there may be pain or a slow recovery after surgery but i also think its best to think positive that everything will be fine cause if you just think the negative then you will go into surgery negative.

[BrianB]

Good points everyone. I guess if I'm going to have surgery, I should expect to have some really tough times, but also will go in planning to work through it all and, in time, be back to my old self, just a little straighter. Heck - setting high goals never really hurt anyone, and I truly believe they are achievable - it just may take some time. Maybe I should change my username to OptimismB.

[hkw]

I know I haven't lived with the discomfort or problems the other people have had, but this is all new to me .. I think the doctors do this all the time so it's not root around in you with a stick and lets see what we find surgery , they know what their doing... I'm 48 yrs old , was in good shape and had a motorcycle wreck in north Ga. and ended up 60' down the side of a mountain. It broke my back at T4-5 and they took bone from my hip to fuse my spine.. Broke 8 ribs,sturnium ,broke 6 verts ,brused my heart , both lungs, wore a full face helmet and still knocked out teeth and split open my chin and on and on...Was knocked out for 15 days before they did my surgery , they didn't expect me to walk , but I am , I walked farther than the PT wanted to in the hospital and said I didn't need him any more... I returned to work on lite duty 17 weeks after my operation , and continue to get better .. I wanted to let anyone who may be up for surgery , that thinks it can,t be better to look at all I've gone through , and changed my life for ever over night ..I'm not in a wheelchair and working ,not taking a disablity form it , so things can be always better you just have to make the best of them and not let something beat you ..Always have a positive outlook and prove everyone wrong when they say you can't do something..

hkw Keith

[Shari]

Hi Jenafer,

Congratulations on your successful surgery. You have accomplished a great deal of things. I think it's only natural to have some limitation when you have rods in the lumbar part of your spine. But it seems to me, if there's someone that can overcome that, it just may be you!!!

I'm assuming that your instructor knows you have had spinal fusion??? Good luck with everything.

Shari