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Leelee
09-04-2007, 08:14 PM
Hi, let me introduce myself as I do not post here often, I am on spinekids for the most part. My name is Leelee and I'm 17 years old. I started wearing a boston brace for two 30ish degree curves when I was 10 years old and I kept on wearing it 23 hours a day until I was 15. When I stopped wearing my brace, both of my curves were around 35. My doctor told me not to come back until after a year had passed, but I began to have so much pain that I came back about 6 months later and found out that my curves had increased to 45 and 40. But my doctor seemed unconcerned with this and unconcerned with my pain, he wrote it off as nothing, and told me again to come back in another year. I was unsatisfied with this, so I pursued a second opinion, but the doctor I ended up with was just as bad as the first haha. This was over a year ago, and since then I have seen the first doctor again and I had still increased some, but again he was unconcerned and told me to come back in two years this time. He also told me that after that appointment I would not need to be seen for 5+ years. My issue with all this (finally to the point haha) is that I just don't feel comfortable with my doctor at all and I definetly don't feel comfortable just waiting around like this, especially when I'm in pain. I can't help but wonder, if I feel like this now, what am I going to feel like later in life? I don't think it's going to get magically better. A part of me just wants to get surgery and get it over with. But that's easier said than done. And I also feel like I'm just being picky and a baby and I should just trust my doctor and accept the situation I'm in. So I guess my question is, has anyone else been in a situation like this? and if I were you, or your child, what would you being doing in this situation? Would you be staying and getting checked in 2 years, and then 5 years and then who knows when? Or would you be trying to get a new doctor? thanks a lot.

laurieg6
09-05-2007, 02:56 AM
Hi Leelee,

Do the doctors offer advice or other ways besides surgery to help the pain? Have you been able to find anything that helps your pain go away? There are some "alternative" treatments or methods you could try that might help. Sometimes acupuncture or certain types of massage/bodywork helps people's pain. There's also yoga & pilates or physical therapy to help with back pain.

I'm sure that if you keep looking, you'll find a surgeon who would operate on you. But it sounds like you're probably done growing & your curves are stabilizing. Maybe the curves won't increase. If I were you, or you were my child, I'd pursue every other method to help with your pain before choosing a surgeon.

My husband & I only chose surgery for our son after 4 surgeons told us that he definitely needed it & that his curves were extremely likely to progress to a point that surgery would be much more difficult. He never even had any pain, just rapidly progressing congenital & compensatory curves. We were told that once curves were over 45 or 50 degrees they'd continue progressing through adulthood. I guess one of your curves is on the borderline but it might not increase. What do your parents say about you getting more surgical opinions?

You can read about what a lot of people are doing for their pain on this forum. The surgery is so permanent & you can't go back once you've had it. My advice is to try to find some other ways to treat your pain first.

Sorry if I've been rambling, it's late but I felt like I needed to tell you this.

Take care,

LAL
09-05-2007, 10:11 AM
I just wanted to tell you that my daughter had the same problem. She had pain for about 3 years as her curves progressed. We went to three doctores and none were helpful as far as the pain. They did do an MRI and bone scan and when they showed nothing (except the scoliosis) they never addressed the pain except to tell us "Scoliosis usually doesn't cause pain". She wsa missing so much school and they wouldn't even give use a note for school kind of acting like she wasn't really in pain. Well she was. Her curves progressed and she had surgery a year ago. The pain hasn't stopped. If you're curves are not progressing, do not get surgery because you thnk the pain may go away, because there is a chance that it will still be there. My daughter is also 17 and a mess from the pain. I know how you feel. Hang in there. Keep searching for a doctor you feel comfortable with that will understand. That is what we are trying to do.

Leelee
09-05-2007, 07:28 PM
I should've probably said that in my first post, but I did try PT. I went twice a week, for about 6 months, but I stopped because it was costing so much money and it wasn't making a difference. I also do yoga by myself at home. I have tried accupunctune before, but not particularily for scoliosis. I think that right now I should concentrate on finding a good doctor, and then worry about everything else later. But unfortunately for me, I'm in an area where there are not a lot of people who treat scoliosis. There is shriners, but that is where I am going now, and there is one other doctor nearby. Other than that, the nearest doctors are about 2 hours away. It's kind of hard to know what my parents think, my mom talked with me about all this a few months ago, but we never really talked about anything definite. My mom heard about a good doctor in Texas, but going all the way to TX for treatment seems so dramatic to me. I think we should probably sit down and talk about it, but my mom is so busy (she's a surgeon herself) that it's hard to find the time.

laurieg6
09-06-2007, 01:11 AM
It sounds like a great idea to keep trying to talk to your mom about this & to have her help you create a plan to find a doctor you can trust. A two hour drive doesn't seem that far if it may get you the help you need to feel better.

I'm really sorry you're in so much pain and I hope you find a way to alleviate it very soon.

Take care,

gasweetpea93
09-08-2007, 05:18 PM
Hi Leelee,
Your situation sounds exactly like mine, except that I'm in a brace right now. I also did PT for a few months. My curves are 45 and 41, and I'm 14 years old. I get pretty bad pain in my back and my right hip, but the doctor hasn't said anything much about my pain or what he could do to get rid of it. The last time I went to see him, he said to let him know at the next visit if the pain in my hip persisted because he would like to do an MRI if it did. It has gotten worse, and my next visit is in two days. I feel the same way you do-- I would almost rather have the surgery right now to eliminate the pain and the paranoia, but the doctor, the people who do my brace, and even my family is telling me that I absolutely want to avoid surgery if possible. Hang in there, and I hope it helps to know that you're not the only one who feels the way you do!!

-Allie

leigh9p
10-21-2007, 08:22 PM
LeeLee - first I have to tell you, I love your name. Mine was Lee and my mother called me Leelee. :) Never met anyone else with that nickname or name. Anyway, we live in No. Calif. and the Drs. here were very insistant on a brace for my daughter, Taylor, who is 14 and just dx with 28/13. She just got fitted with a Spinecor brace and hates it. She is not in any pain. But I've heard that the Spinecor brace does alleviate the pain. I think you should call, write or email the Canadian Drs. Rivard and ? Colliard? Forget the others name, but I'm told they can be very helpful. I do NOT think you should do nothing - though I'm no expert. Check out the Spinecor section on this forum - and good luck. Don't give up. I wish I could help more.

amae28
10-22-2007, 02:08 PM
LeeLee,
I am from the spinekids forum too, although i am older than you... but anyways i didn't realize we were in such a similar boat! Our scoliosis curves are very similar and we both have pretty much the same kyphosis curve. I was diagnosed when I was 14, and by then I was pretty much done growing so i was never braced. However, between then and now my curves have increased around 20 degrees (My lumbar curve is compensary). All of my doctors seemed to shrug it off and I have a lot of pain now. My hands and feet also go num all the time. For the pain, i have done PT (which only helped with a slipped disk), TENS unit, lydocaine patches, pain meds, ice, etc, none of which help for too long. I have decided to have surgery, I found an amazing doctor about four hours away from home and he really thinks that he can help me, and that the kyphosis is a good indicator that my scoliosis will continue to progress. I do NOT want to deal with this the rest of my life, and I am taking the chance that surgery will help me and prevent me from having bigger problems in the future. I figure, my curves have increased around 2 degrees a year, so say, by the time I'm 30 i'd have a nice 65 degree curve. I am studying right now to go into medicine, and definitely don't want this holding me back. Surgery is a very personal decision, and I am still a little uncertain about it but I don't think I will ever be completely gun-ho about this anyways. Good luck, if you have any questions let me know,
Abbie

BETall
10-29-2007, 01:01 AM
I should've probably said that in my first post, but I did try PT. I went twice a week, for about 6 months, but I stopped because it was costing so much money and it wasn't making a difference. I also do yoga by myself at home. I have tried accupunctune before, but not particularily for scoliosis. I think that right now I should concentrate on finding a good doctor, and then worry about everything else later. But unfortunately for me, I'm in an area where there are not a lot of people who treat scoliosis. There is shriners, but that is where I am going now, and there is one other doctor nearby. Other than that, the nearest doctors are about 2 hours away. It's kind of hard to know what my parents think, my mom talked with me about all this a few months ago, but we never really talked about anything definite. My mom heard about a good doctor in Texas, but going all the way to TX for treatment seems so dramatic to me. I think we should probably sit down and talk about it, but my mom is so busy (she's a surgeon herself) that it's hard to find the time.

Hi : Please go to www.scoliosistreatment-Schroth.com
Sosort.org
scoliosisxpert.com
There are several Shroth physical therapist in this country that you can contact .
Be well

Leelee
10-31-2007, 07:46 PM
Leigh- YAY! I am so excited whenever I find another Leelee! haha...there aren't too many of us out there. There is another girl from Australia called Leelee here too. and there is an actress (who hasn't been in too many movies) called Leelee Sobieski. My name is actually Lisa...but I've been called Leelee by everyone since like forever.

anyway I wrote this thread a long time ago....kind of as an update, my mom agrees with me about seeing a new ortho. and the other day I was in my GP's office for something else, and I brought up my back, and my GP agrees about pressing on with all this as well....except I think she forgot that I'm almost 18 and can't go to a childrens hospital soon, since she told me to try cincinnati children's again haha. so i guess I'll start looking at some new orthos soon and see what they have to say.

Abbie- haha I think I know who you are. are you the girl with the avatar that has a cartoon pulling another cartoon's mouth into a smile? haha weird how I remember these things...

Dimitri
11-30-2007, 11:25 PM
We didn't know my 13-year-old daughter had scoliosis, just that she had back pain. By chance we happened to get a free consultation with a Chiropractor (and many are "walk-ins-welcome" anyway) and found out through his x-rays that she had scoliosis. Within three visits, ($20 to $25 per visit) all in one week---Mon, Wed, Fri--for approximately 20 minutes each visit, done after work/school or before...their hours tend to be flexible to working/school age people...Gwen's pain was gone. Since, we could have gone once per week or less, I'm sure, the relief was so immediate...but Gwen's bad posture due to the scoliosis needed work. So we've gone regularly for several months now, while visiting three different ortho-surgeons. All the surgeons remark on Gwen's really good posture, pelvic alignment, etc...despite a 54+ degree curve they want to operate on immediately. {{We're going from Michigan (where we live) to Virginia for a Rigo-Cheneau brace with Luke Stikeleather and to Scoliosis Rehab in Wisconsin for Schroth Therapy. Surgery is not something we want to do.}} The bottom line is: visiting a chiropractor relieved Gwen's pain almost immediately!