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Thread: Scoliosis Sufferer

  1. #1
    Join Date
    Sep 2004
    Location
    Indianapolis
    Posts
    7

    Scoliosis Sufferer

    I would like to say that I thank God for finding this site. I have scoliosis, which was discovered during a routine screeing back in grade school. I am now 37, soon to be 38 on the 25th of this month and I have never been seen for this condition. Although I really feel that I need to, as it seems to be getting worse. The curvature has gotten worse, with rotation of the rib cage. I can't seem to walk in heels too much anymore without walking like I'm losing my balance. It seems to be that way when I wear flat shoes as well.

    I really didn't know the effects that this condition could have on your life and really I'm still learning. Sometimes I do feel like my rib cage is rotating to the point where I sometimes have chest pain, very slight pain. I know I need to go and see a specialist because it seems to be getting worse and I've just started to notice changes in my body. These changes are obviously happening over a period of time, but the issue with my gait seems to have just started a little over a year and a half ago.

    Anyway, just want to say that I'm glad I found this website and just to know that there are other people out there that are going through the same thing. No one in my group of friends or relatives, other than my mother, have this condition so I feel like the lone ranger here. I'm also a very private person so I usually don't discuss this deformity with anyone else. Now I feel like I have others to share this with. Thank you for sharing your stories.

  2. #2
    Join Date
    Sep 2004
    Posts
    18
    Connie,

    I am glad you found this website as well. I have a double curvature of the spine with a rotation that was also discovered when I was in grade school. I wore a back brace for about 3.5 years which did not correct the condition but balanced my shoulders and my hips. After college I started having more pain and the curvature is slowly progressing. I am now scheduled to have surgery in November. If I was you I would get it checked out. I've heard that a progressing curvature in the thoracic region can cause heart and lung complications. My doctor's websit is www.consultingorthopedists.com. his name is Alexis Shelakov and he performs about four surgeries a week. I've heard there is only a handful of doctors like him in the world. I also thank the Lord I found this webite. I feel like I have a connection with everybody because we all have at least one thing in common, scoliosis.

  3. #3
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Hi! Having your back checked out by a good surgeon is a very good idea. My dad had/has scoliosis with kyphosis (hunchback) and he started to have heart problems. The curve takes away room the heart and lungs need to work in. There are different versions of the herrington rod availible now and different surgeries as well. Just avoid the fiberglass rods!

  4. #4
    Join Date
    Sep 2004
    Location
    Indianapolis
    Posts
    7

    Smile

    Thank you ladies for replying to my post on this site. It is just so nice to be able to talk with others who are going through the same ordeal. I realize that I need to take action now, as I have already waited too long. Like I said, only by reading different articles on the internet did I know some of the complications that can occur from this condition. I always seem to let work and home-life get in the way of me just taking care of myself. As my best friend always tells me, if I don't take care of me then I can't expect to take care of anyone else.

    The bad part about it is that I've never even spoken to her about it either. But now I feel more comfortable talking to others who can share my pain, literally


    God Bless

  5. #5
    Join Date
    Sep 2004
    Location
    Illinois
    Posts
    16
    Hi Ladies,

    What a Godsend this site is! It's so nice to find out I'm not alone.

    God Bless All of You!!

  6. #6
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Your right about the heart and numerous other problems you can have with severe scoliosis, my heart and a couple other internal organs are in slightly different places because of my scoliosis. I have learned more from this sight (honest) then any others, I believe that individuals with Scoliosis are the one's with the experience and are living the life. We know what it feels like and what the results are, again I appreciate the NSF Forums and look forward of contributing and learning....thanks.
    Live long and prosper!

  7. #7
    Join Date
    Sep 2004
    Location
    Illinois
    Posts
    16

    Unhappy

    I was diagnosed last year with scoliosis and 4 bad disc. I've had symptoms since the 3rd grade (I'll be 50 tomorrow). Two years ago I took a fall that resulted in a broken elbow. The elbow healed with no problem, but I haven't had a good back day since. Sleep, housework, shopping have become very difficult. My back has always been a problem, but now it has a name!! The diagnosis was quite a shock to me, but it seems that I haven't truly concentrated on anything since the fall. My back/hip/leg/foot are constantly on my mind. Is this common? Will it pass when I come to terms with it?

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Farokie...

    I can't answer the question you asked, but I found myself wondering if you have osteoporosis. If you have poor bone quality, it's certainly possible that you experienced one or more vertebral fractures when you fell. Are you planning on seeing a scoliosis specialist?

    Regards,
    Linda

  9. #9
    Join Date
    Sep 2004
    Location
    Illinois
    Posts
    16
    The elbow break came from a fall down a staircase (my first broken bone). The disc are 2 above and 2 below the curve in my spine. Is that not "normal" for scoliosis. My doctor(s) didn't really elaborate, but presented this as not unusual.

  10. #10
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Farokie...

    Unfortunately, I don't really have enough information to answer your question. It sounds like you're saying the discs within the curve area are OK, but two above the curve and two below the curve are abnormal. That's definitely not normal.

    My recommendation would be for you to see a scoliosis specialist.

    Regards,
    Linda

  11. #11
    Join Date
    Sep 2004
    Location
    Indianapolis
    Posts
    7

    Hello Farokie

    Just wanted to say I know exactly what you mean about your back, among many other body parts, being on your mind constantly. I feel the same way...From the time I get up in the morning until the time I go to bed at night my back is constantly on my mind. Its to the point that I hate for anyone to walk behind me because I think they'll notice my deformity. I hate when someone touches my back, such as when they are giving me a hug, because I think they'll feel my deformity and be grossed out by the way my back feels.

    I have not been to see a specialist just yet but I really need to very soon. I'm so afraid that the specialist will inform me that I need to have surgery because at this point in my life I cannot afford to be off work for 5-6 weeks. My husband suffered a traumatic brain injury 10/7/01 so he's on disability, which helps but is by no means enough to maintain our household if I should have to be off work. At the same time I know I need to have this looked at before it gets any worse, as it seems that it has progressed over the course of my lifetime and is not looking any better.

    Lets all just keep encouraging one another because I think we all could use plenty of that.

  12. #12
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Hi Connie,
    Boy did you hit home with me on that one, I feel the same way after fifty years with scoliosis and even a surgery in 1954. My back has degenerated and progressed to a point that they would again like to do surgery but for me, no way, not now. But this is a personal decission and you must make up your own mind. I just wanted to express my sincere support and understanding, that it does not change and most individuals with spinal surgery if your scoliosis is severe enough will always has feelings toward the back and others. It is hard to understand, but I know you get the picture....good luck and God Bless.
    Live long and prosper!

  13. #13
    Join Date
    Sep 2004
    Location
    Indianapolis
    Posts
    7

    Hi Danite

    I can totally understand where you're coming from, not wanting to go under the knife again. I hope that you're not suffering from any other serious complications due to your scoliosis. Just want to thank for your kind words and understanding.

  14. #14
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Hi Connie,
    I must say that I have just discovered that I have a whole bunch of sisters and brothers on this forum that I never knew existed before. If anyone need to talk privately or just need to vent, I will be available.
    Live long and prosper!

  15. #15
    Join Date
    Sep 2004
    Location
    Indianapolis
    Posts
    7
    Good Evening Danite,

    I feel the same way....just knowing that I can speak freely about the thoughts that are constantly on mind 24/7. This is the first time in my entire life that I feel like I have someone who understands what I'm feeling. People that I can relate to and share things with. I am so grateful that I have found this website and glad to know have someone to talk to.

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