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Thread: I'm new

  1. #1
    Join Date
    Jan 2004
    Location
    Chicago
    Posts
    4

    I'm new

    Hey everybody! I'm new here. Ummm... my story I guess. I wore a TLSO for 12 hours at night for about a year and a half. Then I had surgery on july 9, 2003. I had to wear another TLSO after that, and technically I should be wearing it still. But lately I've developed hip bursitis (or at least that's what it looks like) and I'm not wearing it now because my doctor thinks the brace could be making it worse. Yeah, so I'm glad I had the surgery. Ummm... I can't really do much right now because ofmy hip. It was getting better but this week is exams and that hasn't helped at all. Well, I guess that's it. I'm looking forward to getting to know everyone!

  2. #2
    Join Date
    Jan 2004
    Location
    Phoenix, AZ
    Posts
    37

    Welcome!!!

    Hey!!
    My name is Ashley. I am 15 years old and I was diagnosed with scoli last summer. I was diagnosed with a 30 degree curve. I hate having this and all I want to do is have surgery so that all of this will just go away. I am just so tired of my back hurting!!

    So when were you diagnosed? What was your curve before surgery? What was it like having surgery?

    I'm supposed to get a brace but I'm to scared and I think that it'll hurt to much!!! I just don't want to deal with it either!!!

    Sorry for all of the questions!!!


    I guess I'll go. Talk to you later!!!!!!
    ***ASHLEY***

  3. #3
    Join Date
    Jan 2004
    Location
    Chicago
    Posts
    4
    I wouldn't get surgery if your curve is only 30 degrees. I chose to have mine because I didn't want to wear the brace and my doctor made it seem like I'd eventually need it. If your curve gets larger than I'd seriously consider it. But then again my back never hurt. hope that helped!

  4. #4
    Join Date
    Feb 2004
    Location
    Kansas City, Missouri
    Posts
    21
    I feel out of the loop. I've had scoliosis since I was 13, or at least known of it since then. I am now 19, but I never had surgery for it. I never knew what degree the curve was because I was lucky enough to have my older sister and brother who both had scoliosis, along with my dad and almost all of his family. My sister was told surgery wasn't the answer. That even after, scoliosis usually comes back, it wasn't worth it. My chiropractor told me the same thing. I was refered to a personal trainer who specialized in scoliosis who created a workout, wieght training and floor exercises, for me to strenthen my muscles, everywhere, to help hold myself better, this was almost two years ago, and I saw results in two weeks. No, it's not gone, I still have problems, but I haven't been the best patient either. I sporadically work out, but I can feel the difference in how I feel and stand when I do. I have extreme scarring in my back from it progressing so fast...that's my main problem. (side note: If anyone knows of a treatment for that...could you let me know?) But please--make surgery be your last resort. There are so many things that can go wrong with it, including parallelization...PLEASE look into alternatives...thats what brought me to where I am, I was desperate to the point of WANTING surgery...It takes longer but the benefits are much better.
    Sarah Ann

  5. #5
    Join Date
    Nov 2003
    Posts
    23
    Sarah Ann, I read your post and was wondering how you were referred to a personal trainer for specific exercises? My daughter is 12 and has been in a TLSO brace since the end of August 2003. She has a double curve of 25/22. After a few months in the brace I started reading and thinking about the need for exercise, both now and in the future. But, even though her doctor says yes she should and can do anything I'd like to get her on some kind of routine to strengthen her back muscles especially. Did your doctor refer you to a personal trainer? Did your parents find him/her on their own?

    She has been doing some things like walking and a light aerobic workout but I think eventually she will need to step things up a bit. I would appreciate hearing how and where you found this personal trainer and what kinds of exercises you do and don't do. This seems to be an area (physical exercise) that the orthopedic specialists don't really focus on. Thanks for any input you can give me. Take care of yourself and be healthy! -Kathy

  6. #6
    Join Date
    Feb 2004
    Location
    Kansas City, Missouri
    Posts
    21
    The story how I got to where I am is kinda long, so I'll shorten it. When I was sixteen, my mom was recovering from something that we never figured out what was in her side (stomach). She went to see a nutritionist, who I also went to see. My ex-boyfriend nicknamed her the "witch doctor" because of the way she finds out what vitamins you are lacking, and in order for me to go through this, I needed to see a chiropractor first to get my body in line so I could be "read" right. He is also an athletic therapist, or something like that, and told me I HAD to start seeing a personal trainer. So when we got home, my mom started calling places around here to see if we could find someone that could help me, and my God's good grace or something, there just happened to be a trainer that specialized in scoliosis in the next town, at a small privately owned gym. Most exercises, with supervision, obviously, I would say she could do...the personal trainer is to start you out with the right weight and routine, and then later she or her can adjust it to go with your progress. Unfortunetly, my personal trainer has disappeared off the face of the planet, and all I know is her name is Gloria...I don't remember her last name. Some of the floor excericises I do are something called "Supermans" which a regular doctor told my sis about, I also do about 3 different kinds of situps, another ab exericise that I don't have a name for--having strong abs and back muscles are key to good posture, which, in the long run, could help correct your curve some. Push ups are another important exercise. Every muscle building exercise has to be evened out with the rest of the body, otherwise, you could really screw yourself up with some muscles overpowering others. I hope I helped some, if you have any more questions, let me know.
    Sarah Ann

  7. #7
    Mary Lou Guest
    Don't worry about a personal trainer--go to a physical therapist! My daughter is 12 years old with Kyphoscoliosis and her orthopedic doctor sent her to a physical therapist right at the hospital. She does the "Superman"; one for trunk stability; arm and leg extensions; upper back extensions; pelvic tilt; curl-ups; wall push-ups; plus several for her legs (she has very tight leg muscles). The reasurring part of this is that the doctor and therapist are working together. Some of the exercises are to strengthen her upper back, neck and arms to keep her muscles strong while wearing her brace, but also to have her as strong as possible in case she needs surgery. Oh, yeah, with the doctor sending her for therapy, our insurance helped pay for it, which is always helpful, but it is reassuring to know that the therapist is trained to work with children.

  8. #8
    Join Date
    Feb 2004
    Location
    Kansas City, Missouri
    Posts
    21
    If you can find a physical therapist in your area--that's freaking awesome...congratulations with that. You guys got lucky. I'm sure one in my area could have been found, and much cheaper with my dad's insurance, I just followed orders.
    Sarah Ann

  9. #9
    Mary Lou Guest
    Sarah--
    There's your mistake!!! NEVER, NEVER, NEVER, just "follow orders." You have every right to question everyone. If you ask your doctor a question and he doesn't like you asking, find a new doctor! Go to two, three doctors if you have to until you find a great doctor who will listen to you and offer you the best care possible. I would never sit back and "follow orders" when it comes to my health and especially not when it comes to my daughter's health and healthcare! It sounds like you are very bitter about something--maybe your Scoliosis treatment--current or past--or something. Try to do like the rest of us--take one day at a time and deal with whatever comes our way every day. There are a lot of people who visit this site and even though we all feel like we are the only ones going through this, and we're the only ones who have things bad, there are always people who are worse off than we are. I don't like my daughter having Kyphoscoliosis, but we deal with it as best we can and are very thankful that we atleast have our daughter here unlike so many other parents who have lost children to horrible illness or diseases. So, yes, we do feel "freaking lucky" to have our daughter.

  10. #10
    Join Date
    Feb 2004
    Location
    Kansas City, Missouri
    Posts
    21
    I am bitter about this--not the treatment--I feel good to have any treatment. I've been researching scoliosis for a speech--I already had a ton of information from my own experience, but I don't understand why I had to be one of the 4% of people that ended up with this--it's not fair, it's ugly and it hurts. I have a build up of a ton of scar tissue, my ribs are deformed in my back and around the front of my lungs, and my whole body is pretty much rotated. Also I was just recently told on this website that my argument didn't sound educated. I'm 18, I'm not extremely educated in this. The only reason I found this website was because of researching for my speech. All I wanted to do was to get other people to think about other ways to treat this rather than them just "following orders" and getting sugery because they think that is their only option. I'm glad your daughter has a mom like you that knows it's not the only option. My mom is the same way. She's the one that did something about my problem and I was also lucky enough to have a family support me and even others offer to pay for my personal trainer because it was about $75 a session, which mine was basically the same thing as a therapist, but she was located in a gym and was also a trainer. I don't get why people are trying to make me feel bad on these boards if we're supposed to be supporting each other. If you don't agree with what I say, make a short message out of it so other people will know you disagree, because maybe I have facts wrong or something, I won't ever say I am perfectly right, everyone makes mistakes, me included, don't make it a personal attack on me. I know everyone here is dealing with this in some way, whether it be themselves or a family member...and we're all dealing with it in the same forms, just some worse than others. I just don't see a reason for people to jump on my case because I was trying to help, whether it was "educated" or not. I guess I have a problem following the orders of a professional, too, just like everyone else on here, also. We're going through surgery and treatments because of what doctors and chiropractors, etc. have told us to do them. We trust them because THEY are educated in what we are not. Thats why we go to these people in the first place, to get help with something we don't know how to fix on our own. I'm sorry it's come to me being bitter with whats said about and to me, and the fact that I have scoliosis at all. Maybe everyone should think about what they type--it's not like talking...there is no emotional inflictions with a keyboard and a computer screen.
    Sarah Ann

  11. #11
    Join Date
    Feb 2004
    Location
    Kansas City, Missouri
    Posts
    21
    And Mary Lou, from the looks of your reply to me, you didn't read my history and it doesn't even seem like you have an idea of the treatment I have done and am currently doing, and why. I didn't even see a doctor. My family went through that with my sister and they knew better with me. Four out of five people in my immediate family have scoliosis, after that, my aunt, uncle, grandpa, and his three siblings. Believe me, we barely trust anyones opinion...we don't try it unless its proved to our face it will work.
    Sarah Ann

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