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Thread: I need all of your help :(

  1. #1
    Join Date
    Nov 2009
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    I need all of your help :(

    I know ive posted a lot of threads.. I just cant stand this pain. Physchologically and physicaly. I feel my life is ruined. 23 18 degree scoliosis...atleast thats what it was 7 months ago. My scoliosis decreased, i can feel it because im shorter and my body look slike my chest is on one place and hips on the other. it wasnt like this before.
    the doctors i went to didnt know anything, only one was a good doctor but he didnt seem to care. He was like: ok well u might have done growing u shouldnt do anything live ur normal life bye. WTF!?

    My tailbone hurts SO MUCH. I can not tell you how painful it is. ALL THE TIME. scoliosis is the cause.

    Im 16 and im 5'2 I wish I could wear a brace because i might be growing, who knows.
    swimming really helped me but then again its not a permanent help.
    and they said brace is for curves 25+ well mine iis 23, is that really a big difference?
    I just wanna do what i can when its not too late (((((((
    please help me

  2. #2
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    Quote Originally Posted by pearlgirl View Post
    I know ive posted a lot of threads.. I just cant stand this pain. Physchologically and physicaly. I feel my life is ruined. 23 18 degree scoliosis...atleast thats what it was 7 months ago.

    (... snip, snip ...)

    the doctors i went to didnt know anything, only one was a good doctor but he didnt seem to care. He was like: ok well u might have done growing u shouldnt do anything live ur normal life bye. WTF!?
    I'm unclear what you want your doctor to tell you.

    What he's told you so far (that your curve wouldn't benefit from bracing) doesn't make him a bad doctor - nor does it make him uncaring. I think you should listen to him and live your life normally. It (your life) certainly isn't "ruined".

    They simply don't brace 23/18 curves, especially when the patient is 16. As has been stated multiple times, there's a good chance you'll never progress. I suspect you're going to keep getting that same answer here unless something changes.

    As far as "psychological pain", I'm not saying it's invalid, but you're creating it with all the melodrama, hon. You can make it stop.


    Quote Originally Posted by pearlgirl;
    My tailbone hurts SO MUCH. I can not tell you how painful it is. ALL THE TIME. scoliosis is the cause.
    I'm curious ... when did this unbearable physical pain begin? About 6 weeks ago, you posted:

    Quote Originally Posted by pearlgirl View Post
    When I swim i dont have that much back pain but with more curves comes more pain i gues.. =(
    I guess I have to swim for the rest of my life...
    Did you have an accident or injury of some sort? It's not logical an 18 lumbar curve is causing pain like you describe. It's probably something you should discuss with your parent or guardian.


    Quote Originally Posted by pearlgirl;
    I wish I could wear a brace because i might be growing, who knows.
    There are definitive methods to verify if you are growing. It's not an invisible process.

    Regards,
    Pam
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  3. #3
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    Quote Originally Posted by pearlgirl View Post
    My tailbone hurts SO MUCH. I can not tell you how painful it is. ALL THE TIME. scoliosis is the cause.
    Here's something you can do to help yourself... call or email your orthopedic surgeon and ask if the extreme pain in your tailbone can possibly be related to your scoliosis. If it isn't then the surgeon can try to figure out what is really causing the pain. Did you fall recently? That is a much more likely cause as far as I know. Not sure scoliosis at your degree can possibly cause that type of pain but I don't know.

    Here's another big thing you can do to help yourself... it seems like you are worried your curves will increase over your life. As Pam said, it is highly unlikely that curves like yours at your age will ever progress. Bracing is not indicated and I have to wonder if a brace would help with your pain even when you curves are so small. The only conceivable reason to be braced at your age is for pain. Spinecor has helped at least a few adults (you are not an adult but are almost certainly done growing) with pain but they had larger curves than yours... if your pain is NOT due to scoliosis, I wonder if a brace can help you. Again, ask you surgeon about this. Then ask yourself if you can bring yourself to believe him on this.

    And also what Pam said, They can do a radiograph of your hand/wrist and tell you whether you are done growing or not. Maybe you can request that to ease your mind. There are oddball instances where 16 yos might still have some growth left although not if they are two years post menarche as I understand it.

    Good luck and please get those answers... they will set you free. Knowledge is power.
    Last edited by Pooka1; 03-08-2010 at 06:15 AM.
    Sharon, mother of identical twin girls with scoliosis

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  4. #4
    Join Date
    Mar 2010
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    Pearlgirl,
    I can certainly sympathize with your pain. I was diagnosed with scoliosis at 16 and was in excruciating pain at times. I had a 39* upper thoracic curve. My pain IS due to scoliosis. However, I have had, and still have horrible tailbone pain at times, too. I believe this is totally unrelated to the scoliosis. I also have excruciating lower back pain, in my adult years, that is also unrelated to scoliosis.

    Your pain is very real if it interferes with your life. No one can tell you that you don't hurt, and I don't think anyone is telling you that. There may simply be another cause. I know that I fell really HARD when I was 11 years old. I could barely sit down for 3 months because my tailbone hurt so bad. My mother never took me to the doctor, but I sincerely believe that I may have fractured it. It still flares up now and then. Maybe talk to your parents and see if they can remember you ever having an injury where you may have fallen on your bum, as you may not remember. You may need to see a different doctor to have this evaluated.

    I agree with the others that at 18*, this is "likely" not scoliosis related. But I do believe you and your parents need to investigate what is going on here. It may be an injury, like mine, or it could be something else. It's the squeaking wheel that gets oiled. If it bothers you that much, insist on finding the cause. If they can't find a cause, that doesn't mean you are crazy. It may just mean that you might just have to focus on a treatment that helps.

    You mentioned that swimming gives temporary relief. Swimming is FUN! And who knows, it may eventually be the permanent solution to your problem. As those muscles build up over time, it may go away on its own. At 16 years old, I would expect that your body would be very responsive to exercise. So my advice to you is go to doctors and try to get the answer to your problem and swim, swim, swim! You could also try applying an ice pack during flare-ups. If that doesn't work, a heating pad might help. Be careful not to burn yourself. A warm bath might be safer for you. Try laying on your side so that you are not putting pressure on that area.

    Try not to obsess that your scoliosis is taking over. I'm sure there is a simple solution to this problem. I'm not sure how they could brace the tailbone area even if your curve was worse...???

    And just to validate your concerns. If you read on the NSF home page, there is a link to an interview with a top scoliosis specialist where he basically states that the degree of the curve is not always linked to the degree of pain. So in the end, you could be right, who knows? I can't imagine what treatment they (meaning the doctors) would use except possibly some medicines that reduce the inflamation (there can be very large risks to those medicines, especially over time. So don't take that route lightly) and exercises that you are already doing. So, like I and others have said, talk to your parents. I hope this helps and ((((HUGS)))) to you. I hope you get to feeling better.
    Last edited by rohrer01; 04-06-2010 at 07:16 AM.

  5. #5
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    May 2009
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    I agree with Rohrer101. When I was in school I fell very hard on my tailbone going down some steps. I always thought I fractured it. It was extremely painful to sit for any length of time. I finally went and bought one of those blow up donuts with a whole in the middle and sat on that most of the time. That seemed to help and let my (bum) heal and inflammational subside. Then, when I was pregnant, our son was so anxious to greet the world, he came so fast and furious that he broke my tailbone on the way out the doctor heard it snap he said. THAT was more painful than the labor or delivery and again I could not sit for quite some time without the donut. So, I, too, have had tailbone issues that were completely different from my scoliosis.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  6. #6
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    Apr 2011
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    UK
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    18

    Smile

    Hi Pearl,

    Have you tried pilates or yoga? It seems like you aren't very keen on swimming but I find more relief from pilates although as other posters have mentioned I have been advised that the muscle swimming builds will provide pain relief over time simply because you can better support your back with your own strength.

    If you find you are in pain a lot of the time have you thought why this might be? I find sitting for a long time at a desk or a computer really aggravates my back pain, could this be a reason for it if you are at school, or possibly spend a lot of time on the computer at home?

    I hope you have some good days coming your way,

    Kate

  7. #7
    Join Date
    Apr 2011
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    19
    Well, I am of another mind. The spine is very complicated. It is conceivable to me that the even a curve your size can cause great pain. It all depends on the nerves. You may have some nerve involvement.
    I think you should convince your parents to take you to one of the top doc's for a consultation. Dr. Lenke's office could refer you to some one , or you could wait and see him. He takes insurance and the hospital has a booklet to tell you that they offer reduced fee's and help with the financials. See Lenke or get a referral from him. All of us started with a small curve---yes, they get bigger, even after you stop growing. I have personal experience with this. My once curve of t-103 was very small!!! If you think something is wrong, it is. Trust your feelings and advocate for yourself. Take care but don't stop speaking up for yourself.

  8. #8
    Join Date
    Nov 2011
    Posts
    8

    Thumbs down Hello

    I was wondering if it was just me, but did the girl Pam sound rude. i don't like to judge people but if you don't have a curve you don't know what its like. and i think all the questions she asked where kinda PERSONAL!!!!!!!!!!

  9. #9
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    Just a reminder folks, to watch for posts in the Adolescent and Teen Patients. It is preferable that adults not post in this forum. Thanks.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
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  10. #10
    Join Date
    Jul 2012
    Posts
    2

    Have you been to Shriners?

    Quote Originally Posted by pearlgirl View Post
    I know ive posted a lot of threads.. I just cant stand this pain. Physchologically and physicaly. I feel my life is ruined. 23 18 degree scoliosis...atleast thats what it was 7 months ago. My scoliosis decreased, i can feel it because im shorter and my body look slike my chest is on one place and hips on the other. it wasnt like this before.
    the doctors i went to didnt know anything, only one was a good doctor but he didnt seem to care. He was like: ok well u might have done growing u shouldnt do anything live ur normal life bye. WTF!?

    My tailbone hurts SO MUCH. I can not tell you how painful it is. ALL THE TIME. scoliosis is the cause.

    Im 16 and im 5'2 I wish I could wear a brace because i might be growing, who knows.
    swimming really helped me but then again its not a permanent help.
    and they said brace is for curves 25+ well mine iis 23, is that really a big difference?
    I just wanna do what i can when its not too late (((((((
    please help me

    Have you been to a Shriners Hospital? They see adolescents with Scoliosis and treat them for free. Exercise for Scoliosis is a HUGE relief where pain and discomfort are concerned. Also, no impact exercises like running. Sorry, but that's a huge no no. I ran long distance in high school and it caused my discs to degenerate even quicker. Alternating ice and heat on the tailbone will help, 15 minutes to 15 minutes.

    Here is a link to my blog with some modified exercises for Scoliosis. I managed my pain and discomfort for my 57 and 49 degree curvatures from the age of 14 until 26.

    http://www.scoliosissurgerysurvivor....-changing.html

    Physical Therapy is a huge help as well. Also a Tens Unit. It helps with pain and muscle spasms and can be worn basically all day and no one notices.

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