21 year old w/ kyphosis!

[ColdBricks]

Hi everyone! I know this is a scoliosis forum, but I figure I can be the oddball and throw in an interesting variation, lol. I am a 21 year old male and have the scheuermann's disease kyphosis (or however the heck you spell it!). I am a senior @ Purdue University studying aviation technology and electrical engineering. I have had this since i was 14 years old. My curve is about 72 degrees I believe. I really don't know exactly because I try to not think about it too much. When I lost a ton of weight in high school, it became obvious that the back was a little rounded and I had pain sometimes. I play drums and guitar, and the extended hours of playing made the pain worse (especially for stuff like recording studios,practicing for the American Idol band, radio shows, etc where we would play like 5,6,7 hours a day). In addition, sitting for a while would make me stiff and in mild pain. I prefer to read on my belly, hate loose shirts, and hate doing sit-ups! lol. Cosmetically, unless I have my shirt off, its very hard to notice...

I have been working out for a few years which really helped my back muscles strengthen (plus I look a lot better!! mmmm). But I have had a few questions.

How many of you are in daily pain? I was braced in high school and it hasnt gotten any worse (my curve actually improved a few degrees). The pain is nothing terrible, but it is annoying, really. It is like a dull ache, I have described it to my mom/girlfriend as a 'rocks in my spine' feeling.

Aside from this I am very healthy. I don't smoke or do drugs, and I only drink occassionally. I was 210lbs when I was 5' 4" in jr high, and now I am 5'9" and about 165lbs. I'd like to hear if anyone else has this and what they have done for the pain? A few things that definetly make it worse are caffiene, stress, bad weather (the pressure changes the pain, I can assure you), and prolonged periods of sitting/standing. I used to work in a warehouse, lifting 6 hours a day. It killed my back, but in reality, it was helping it by strengthening it. My doctor as told me over and over that the best thing i can do is to kick my butt in the gym, i.e., pump iron to help my back. So far, I have been on with this. Of course, occassionally it still bugs me. Thats life. id love to hear what you guys do for the pain!

This has never really affected me socially. I can see how it could, but I was never self-concious enough (everyone is self-conscious, but you cant let it ruin ur life) to worry about it. I always had really good friends, great family, great girlfriends, and just generally an awesome time when I was younger. AI always try to be positive about everything, even if they're overall not very fun. I am in mild pain often, yes. But hey, if I hold my back straight up to be best of my ability, girls say it makes my butt look great. So, hey, I like that!!

But in reality, its the PAIN that get's to me. Id gladly look a bit worse in exchange for no pain!!
Anyway,I cant complain too much or ill get my wish! Surgery scares the HELL out of me, and I would only get it if I was literally unable to move or the pain was ruining my life. ..so i am meeting with my doctor soon to discuss the future options.. My doctor is very 'oldschool' and I really respect his mentality tword the whole thing. He comes from the school of 'surgery is a very VERY last resort'. my doctor has said surgery may not help the pain. in fact it can make pain worse. It can cause stiffness. It can really degrade the quality of a patients life if it does not work out. So, unless i am like unable to function, I am NOT going to recommend myself for surgery. I can handle mild pain. I could not handle chronic pain. My doctor is also highly against 'new' surgeries until they have proven to be of long-term value. "Ask me in 10 years if i recommend it" he always says. Maybe some people would think he's a bit arrogant. I think he just takes calculated risks very seriously, and doesn't go cutting people open if they don't need it. He recalls back in the 70s/80s where people were corrected, and now have to have massive revision surgery due to the fusions. FWIW, my doctor actually has kyphosis himself, and has been in practice for nearly 35 years. I trust him...but having said this, surgery is always an options....though it is not recommended, i have not ruled it out....anyone been through similar? thanks!

[Hannamom]

Coldbricks

My 13 year old daughter had surgery this summer in NYC for severe kyphosis, most likely Scheurmanns. She had an 81 degree kyphosis curve and was in daily pain. Dr. David P Roye did the surgery at Morgan Stanley Childrens hospital, part of Columbia. He suggested we not wait more than 6 months to have the surgery done. We saw him for the first time almost a year ago, as a second opinion. Her curve was progressing rapidly and I am quite certain she would have ended up in a wheel chair in the near future.
She was fused from T2 to L4. It has been a long recovery but we are both quite pleased with the results. No more back pain, just occasional stiffness and achiness and her posture is just beautiful! She gained 3 inches in height.
Good luck with your doctors appointment. Finding the right doctor is so important.

Hannamom

[ColdBricks]

Hi Hannamom, glad to hear your daughter is doing well! Always great to hear about surgeries that went well. My curve is in the high 60s/low 70s I think. The doc says complications are a non-issue (extremely rare) in scheuermanns kyphosis, the bigger concern is pain. you may hear stories of people with heart problems or breathing problems, their curve is like 100 degrees+ and in that case I am sure surgery benefits outweigh risk. I was braced in high school and I'd like to think it helped. I never wore the brace during the day, as the doctor knew I wouldn't. He was right. lol. but I wore it at night. didn't get any worse. so i am fairly lucky in that sense. I'll let you know how my appointment goes. hopefully it'll be a non-event. no news is good news i guess. sometimes I think surgery would be a good idea for me, as I get very self-concious and am in pain sometimes. but then i think if I'm willing to take the risk of more pain and complications. Or the idea of future medical technology. in 10 years they may be able to coax bone to regrow in a programmed way, perhaps. Or stem cells could dramatically reduce the risk associated with spinal surgery. Like my doctor says, if i get surgery today that means I will msot likely have to live with the rods for 50+ years, and medically, that is almost not possible in today's practice..what he's saying is surgery would mean more work down the road. I think in the future we'll begin to see more artifical disc replacement thater than rods/screws/pins, a very old technique. Who knows. They already do that type of thing for knee replacement, etc. It'll just be a matter of time. The point is, once I go under the knife, there's no turning back. Many surgeries go well all the time. But there are some who need 4, 5, 6 revision surgeries, and each one has it's risks and degrades the natural ability of the spine to do it's thing. Big decision to make, especially if I don't 'need' it.

Many doctors would be extremely reluctant to operate on me, and I think even as much as i would want the surgery to improve my self-appearance, I would question ANY surgeon who tries to convince me I need the surgery. I can work out, I can be braced, I can go to physical therapy, I can try cortisone shots. But as soon as I get cut open, that's it. There's no turning back. Surgery is a 'destructive edit'. It's not reversible. There's no 'undo' button. And that scares me.

Regardless, i am glad the surgery went well for your daughter.take care!

[Snoopy]

Coldbricks,

My 18 y.o. daughter had surgery 5 years ago for her Kyphoscoliosis (both Kyphosis and Scoliosis). She is fused from T3-L2. Before surgery, her Kyphosis was about 71*and fairly stable, but her Scoliosis continued to progress, so that was the reason for her surgery. I must admit, even with Kyphosis, Scoliosis and some other back issues, she never had pain. It's weird, some people have large curves and no pain and other who have relatively small curves, have a lot of pain.

Good luck with your decision.

Mary Lou

[spinalfusion09]

Hi there! I 'm sorry that your back is causing you such pain :{ I do not have kyphosis but I just had surgery for my case of scoliosis. I had a 60 degree thoracic curve and it had no intention of stopping. I'm 18, female, and a sophomore in college. Even though my case is different from yours I hope it goes well for you and that you find some pain relief. Surgery is difficult and it was the hardest thing I think I've ever gone through. But I have never felt better! And my back feels fantastic. There are many people on this forum who have great advice.
Maliha