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dawney
05-30-2006, 02:25 PM
I was diagnosed in 7th grade. When I was 13 I had to wear a boston brace, which I detested and ditched as often as possible. My thoracic curve was about 38 degrees. I have ignored it until about a year ago. I have been in pain off and on for about 15 years. This past year I have been in constant pain. I have tried epidural injections, p/t and chiropractor. I have to take pain meds to function. I am seeing an orthopedic surgeon next month after I get a new set of x-rays. He doesn't do scoliosis surgery but can fix my herniated disc. Any information is greatly appreciated.

summer
06-01-2006, 03:58 PM
Hi
I was in the same situtation as you and didn't wear my brace enough when I was younger. I still believe I would've needed surgery anyway eventually. Your decision depends a lot on the amount of pain you're in and the degrees of your curves. So, check back in after your dr. appt. Feel free to ask me any questions!

JENNDENVER
06-01-2006, 04:38 PM
Hello I am 25 years old, diagnosed with scoliosis when i was fifteen. I cant remember the exact degrees but im positive it's 40+ lumbar and 50+ thoracic. My parents were holistic people and i never saw doctors growing up. After the diagnosis i believed that with aggressive body work i could prevent it from getting any worse and my mother was opposed to surgury. I've definitely experienced increasing discomfort with age, but i try to rationalize that everyone has back pain. My doctor in NY wanted to operate when i was 15. I went back for xrays at 23 to a differ doctor and he said that there is no known cause and no way to know whether it will progress. I guess that's the "watch and wait" approach. I feel that the physical deformity of it has gotten worse and, to me, that's an indicator that the curvature is also progressing. Up until now ive avoided the problem. Some people think surgury is a good idea because it helps you get on with your life. Im fearful that when i am older i will have wished i got surgury at the age i am now. I would really appreciate replies from anyone with some good insight. If anyone is in the Denver, CO area, would you have any good referrels for surgeons in the area?

Jenn 25

dawney
06-01-2006, 06:08 PM
My advice, which is something I should have done is to monitor the progression of the curve. Find a good doctor that you can trust and make the appropriate decision when the time comes. Right now I am in constant pain, And I wish that I would have addressed it before it got to this point. I have trouble walking and functioning without pain meds, it doesn't help that I have a physical job.
Good Luck

JamieAnn
06-01-2006, 09:11 PM
I still do not get why doctors say that "scoliosis does not cause pain" - that baffles me.

Jenn, I'm 25 as well and avoided the topic for a good 10 years. I recently went to a surgeon (just for information really) and wasn't prepared to hear that my curves got 11 degrees worse over that time. I know how "waiting and watching" is not a real easy thing to do. Luckily I have very supportive boyfriend, who reminds me that he "doesn't notice" and it doesn't necessarily mean I'm doomed for surgery.

I would suggest getting a few different opinions - that is what I plan on doing. Keep your head up - you will find an answer eventually. :rolleyes:

lostfan
06-04-2006, 10:01 PM
Jenn and JamieAnn

I too am having the problem of deciding on surgery. I am 37 years old and was told at age 16 I had a 50 deg. thoracic curve. Parents only took me to a chiropractor. Through the years I've gone and been checked every few years. In 1995 at age 26 I was at a 57 deg. curve and 5'4.5" tall. I just was rechecked by the same doctor in May and now have a 64 deg. curve and am 5'3.5" tall. To me...this is a slow progression, not the usual 1 deg/year or more that most people speak of.

The ortho surgeon just said "surgery". We agreed that I would come back in 2 years and be rechecked and he wants to do the surgery at that point. I suggested waiting until I was 45 y.o. since it was progressing so slow but he did bending xrays and said right now I would still have a great correction and my spine is still very flexible and not rigid. He said the longer I would wait that could all change.

My husband says I don't look bad at all...and he doesn't care either way. He will stick by me. I have a small hump developing on my back that didn't used to be there but it is not huge and isn't very noticible w/clothes on. I also have the one hip that is higher and is becoming more noticible to me. I don't have a lot of pain...only if I over do it but usually some rest and a trip to a chiropractor will work fine. Even people w/o scoli have back pain though.

I see that it seems to be true that each curve is different and you can't predict what yours will do. I only really worry about breathing problems as I age and deformity. They say the thoracic curves are the ones most likely to cause problems breathing. I try and do the math and figure if it keeps progressing at approx. 1/2 deg./year where I will be when I'm 60-70-80 years old...I've also read on this site that when you get older and your bones naturally weaken that people have had curves progress much faster - for example with menopause or osteoporosis. That makes me think like you, that maybe I should just get it over with now before I get any older.

It can be so over whelming to think about it, especially if you are not in any major pain. A lot of people are driven to the surgery by the pain. I wish there were more cut and dry answers.

I hope you keep posting and let us know what you decide as you go. I too am going to check around...talk w/different doctors and keep searching the internet. I've found a couple good books on the subject and started a notebook w/notes from this site and the books, etc. so I can look back on it all while trying to decide.

dawney
06-09-2006, 05:08 PM
I went for xrays today. It was an ordeal. They were training a new tech and I had to get them done 3 times, of course this meant dressing and undressing for each time. Then they couldn't seem to center it, I had 4 techs in there and one time and I just started crying, By the way I am not a crier. It just seems that now that I decided to do something I am getting the runaround. My primary is giving me a hard time about giving me pain meds, I also have a herniated disc and stenosis. I am seeing a doctor at the Rothman Institute on Tuesday. I didn't get the xray report, but my spine looks a lot worse than I thought it would. This site has given me a lot of great information and lets me know that I am not the only one.

Karen Ocker
06-09-2006, 07:53 PM
I strongly suggest seeing only a scoliosis specialist for adults. Their x-ray technicians are used to centering curved spines on the x-ray plates.
Anyone else :eek: is a waste of time, pain and money because they are not properly trained in scoliosis which is an orthopedic subspecialty.

makaylasmom
06-11-2006, 10:37 PM
I definitely agree! I went thru way too many docters, took me a good year to finally get to a great surgeon (who specializes in adults with scoli). Alot of time got wasted on the wrong docs! Some wanted to do several surgeries, one doc said it was "too bad" and he couldn't do anything, one said he had absolutely no sympathy for people with scoli and told me to take Aleve for the pain, did the chiropractor thing (which for me was a waste of time). It took me a whole year to find a doc who could understand.. and I went a whole year in agonizing pain with no meds at all! Finally, I found a great docter! and the difference is HUGE. He has seen what I am going thru and is very responsive to my needs. I STRONGLY suggest finding a surgeon/Doc who specializes in Adult Scoliosis. There is no sense in being in pain/suffering when there is help out there., sometimes it takes a bit of leg work to find these specialists... but is is very well worth it!

Also, just a bit of advice- the other docs that I saw only took X-Rays and sent me on my way. The very first visit with my surgeon (who is doing my surgery) he sent me for X-Rays & MRI's. He wanted to be thorough.. and I'm glad he did- cause the other docs didn't do these things, and I was way worse off then they thought. They missed the 3 tumors in my spine, the DDD, the degenerative arhritis, etc. I only wish that I would have found the right doc sooner! Sorry, didn't mean to get on my soap opera here! It's just amazing to me that so many docs just don't get it!

dawney
06-11-2006, 10:55 PM
Good luck with your surgery. I think I may have found the right group of doctors. I am going to see one on Tuesday, with a lot of mixed emotions. I just want to have some answers. I am definitely the kind of person that once she sets her mind to something doesn't want to wait. Ask my boyfriend!!!! I have waited a long time to get to this point but I am ready. I wasn't prepared to see how bad my x rays looked. In one respect I just want him to say lets do the surgery and be done with it, but another part of me wants to hear that it really isn't that bad. I guess I will have a better idea in about 36 hours.

makaylasmom
06-12-2006, 08:42 PM
Dawney-

Keep me posted on how your trip to the docs go. I will hope only the very best for you! Remember to write down all your questions and make sure they are all answered. Thanks for the good luck!