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Thread: My Way of Coping

  1. #1
    Join Date
    May 2010
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    Burlington, Ontario
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    My Way of Coping

    I have been reading this forum on and off for several years. I am going to post my situation for what it is worth. This might be long, so bail now if you haven't the patience or interest.
    I was finally diagnosed with idiopathic scoliosis in 2002 at age 39. I have a thoracic curve of about 70 degrees.
    My family physician finally noticed and got curious. I had been told I had a curve, but no one, including chiropractors and osteopaths, ever said how big or ever discussed treatment. I have always had some back pain. From standing too long. Fom walking too far. I have described it as feeling like someone is driving the tip of a broomstick into the middle of my back. Back pain was just a fact of life. I have been asked many time how much it hurts, but I don't know how one quantifies that in a meaningful way. My pain might debilitate some or be a blessed relief to others, I don't know.
    Upon diagnosis, I underwent tests and x-rays. They decided it wasn't going to kill me. My lungs would be fine. My heart would be fine. I get annual x-rays to monitor the curve. It has remained stable since diagnosis. Since it wasnt going to kill me and, at my age, not much aesthetic reason to do so, surgery has not being recommended. The risk, I am told, would be greater than the benefit. Although the degree and kind of benefit is a matter of opinion.
    I was quite bothered by the discovery and the failure of the medical community (and my family) for some time. The first time I saw the x-ray, it was very startling for me. I am sure many can relate.
    Were my back straight, or at least straighter, I would be 2-3 inches taller, would not look or feel crooked. I would not have had the years of my youth feeling so awkward about my body.
    Water under the bridge, now. I cannot change the past. I have been doing my best to take control of the present. Doctors told me there was nothing in particular that I ought not do physically and I have taken them at their word.
    I have been weight training for several years now. Back pain does not go away, but it is better and I move better.
    I can squat 365 lbs. I can deadlift 405 lbs. I can leg press over 900 lbs.
    I am going to enter a natural (steriod-free) bodybuilding contest this July. I am still crooked. I look crooked. My hips meet my ribs. And symmetry is one of the judging criteria. I will enter at a weight of approx 180 (hopefully less in the next couple of weeks!) and I will stand in very skimpy trunks in front of a sold out auditorium.
    This is very scary for me as I have always been very self-conscious about my body shape. But its been hard (but fun) work and a fear I will overcome.
    I won't win anything, but I will show well enough.
    I realize my way of coping won't be and can't be for everyone. Some days it really hurts. Some days its fine. RMT helps a lot, but there is no cure. Some days looking in the mirror just makes me angry.
    I post this because it is cathartic. I hope others might find it informative. Some might just give me heck. All reactions welcome, if any.
    Last edited by Twisted Lifter; 06-12-2010 at 06:16 AM.

  2. #2
    Join Date
    Apr 2009
    Posts
    1,258
    I can relate to everything you have said. Like many of us, maybe you are stronger than you know. I admire you, and am glad you posted your thoughts. You will win something in this competition - something more important than any trophy .. and I wish I could be there to encourage you! What is RMT? Denial has been my best coping mechanism ... but the mirror tells no lies. Wishing you all the very best :-)
    Idiopathic, from the Latin meaning: we're idiots 'cause we can't figure out what's causing it (TV Dr. House, MD)

    I'm not weird ... I'm simply - multifactorial

  3. #3
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    I say you're incredible - and instead of penalizing you on your lack of symmetry, I think you desrve a medal for each and every degree of assymmetry! Thank you for posting!

    Can't believe the lifting hasn't caused more pain and crookedness,,,

    One thing, please clarify - are you male of female?

    By the way, I MUCH doubt there is "nothing" that can be done for you surgically. In fact, I'll go out on a limb and say I'm SURE. What they meant, was "there's nothing I can do for you surgically."

    I was told that by two spinal orthopods in town who refused to see after viewing my MRIs! And they didn't even have the courtesy to tell me face to face, NOR did they make it more precise, in terms of just WHO could and couldn't help me.

    I hadn't remembered that when I started to write. Just thinking abt it burns me up. What if I hadn't known there were other surgeons and other avenues? I was just turned down by Dr. Lenke because with a lumbar curve of "only" 60 degrees, I'm not crooked ENOUGH!

    So go figure! Note he's booking too far out for me too, FWIW, but there you have it. He's the incoming president of the Scoliosis Research Society.

    Nb
    I have described it as feeling like someone is driving the tip of a broomstick into the middle of my back.
    Thank you for that GREAT description of my thoracic pain. I always had a hard time with those forms that ask for symbols for my pain - burning, stabbing, numbness, ache, etc. Yours is perfect, and very colorful. Even helps me imagine the wicked witch wielding the broomstick!

    I only wish it were ALL as I also have a terrible dull ache over the entire lumbar region and considerable numbness too...
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  4. #4
    Join Date
    May 2010
    Location
    Burlington, Ontario
    Posts
    27
    Thank you for your kind responses.
    RMT is Registered Massage Therapy. Like I say, it doesn't fix anything, but it does help keep me walking upright.
    I didn't actually say that I was told there was nothing they could do for me. I was told the risks outweighted what they perceived to be the potential benefits. Obviously a matter of perspective.
    And I am male. Sorry I skipped that fact.
    In the long run, I have found lifting has added general support to the overall condition. It has strengthened abdominals and the back overall. I do have to be careful to work as evenly as possible. I can't do certain crunches without searing pain or others because my rib cage crashes into my hips.
    I keep working out because I feel like it helps and makes me stronger. I think I walk better and less awkwardly.
    I will be competing in the novice class as this is my first competition. And I must give some thanks to my brother for his ongoing help and encouragement. (for any interested go to www.idfa.ca)

  5. #5
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    3,261
    Welcome Twisted Lifter. Just wanted to wish you all the best in your competition and pat you on the back for your courage.

    Just one thing...I used to attend the gym 2-4 times weekly in my late forties/early fifties and it was at this time that my curve started progressing. Weights were part of my workout and it never occurred to me at the time that it might be bad for my back. I was fit as a fiddle and was in denial about my scoliosis. But the reason I stopped gym work was because of the onset of pain and increasing curvature. I am now wondering if it wasn't the weights that set off the progression. Something to think about for those lifting weights with scoliosis, though my intention is not to frighten, more to encourage a bit of thought and debate.

    Of course, it could simply have been my age and "my time" for progression. I guess I'll never know.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  6. #6
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Twisted Lifter,
    I wish you the best with your competition. It takes guts to compete in any kind of competition. (especially if you are self conscience about your body) I quit swimming laps at our local pool a few years ago because I felt too embarassed about my rib hump (I didn't even know what it was called until I got on this forum!) I still play competitive golf tournaments, but when people are standing behind me as I'm addresssing the ball, I'm wondering if they are watching my swing or wondering what in the world that bulge is on my back. It makes it a little hard to concentrate on the shot.
    I agree with Back-Out, that there is hope surgically for you. After reading on this forum, it seems that most of us have increases in our curves when we hit the good old 50's. I'll be 60 when I have ny surgery in Nov., but I'm thankful that I was able to be physically active during my 50's. The scary thing for all of us is wondering what we will be like physically down the road following surgery. Many are in so much pain, they have no other alternative than surgery. As others have pointed out, we don't know our future if we don't have surgery either.
    Good luck with the competition! Be sure to let us know how you do.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  7. #7
    Join Date
    Mar 2010
    Posts
    2,755
    It's always nice to hear someone's heartfelt story. A 70 degree curve is pretty big. I'm considering surgery on my 46* curve because of the pain, it's exactly as you describe. It's amazing that you have the self-esteem to go through with your body building competition! I got into body building in my late teens and was encouraged to enter the novice competition. I didn't go because I was self-conscious about my appearance and my curve was only 36* back then. Your story is very encouraging to those of us that look in the mirror and walk away frightened by our twisted appearance. I have a friend who had a 90*+ curve corrected and she's lost correction. She hides under big, baggy things. She is such a beautiful person, inside and out. It saddens me that we live in a society that tries to squeeze everyone into it's "perfect" mould so that we feel like we have to hide ourselves. I will tell you one thing for sure. If you don't win anything at your competition, you have already won the support and admiration of those of us here!

    A word of caution: I would HIGHLY recommend that you see an SRS surgeon for your curve and your pain. I've been told by numerous doctors that a curve that big should be fixed. I've had some that say the surgical trigger is 40* and others tell me it's 50* (that puts me in the surgical grey area). You must be in your early 40's? The last doc I have talked to said that surgery is more successful when you get it done younger and people do have it done for pain management (even one's with "smaller" curves like mine). Obviously there are no guarantees, but if your ribs are truly hitting your hips making it difficult to move, you might consider at least getting a consult so you can make an informed decision as to whether surgery is right for you or not. I'm pretty sure that weight lifting would be contraindicated though if you had surgery (and maybe they would frown upon it now), depending on which areas you were working on. Just some things to think about. You don't want to inadvertantly make it worse.

    Best wishes on your competition. You MUST let us know when it is over so we can congratulate you!

  8. #8
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133
    Twisted,
    Good for you! If It doesn't hurt, keep doing anything to keep you strong. I don't lift weights, but I've always done a lot of gardening, biking, and swimming. In the last few years, my curve has worsened above my fusion; I've had pain due to lumbar arthritis since I turned 40; and now I have neurological symptoms due to continued degeneration. So life isn't necessarily a bed of roses after surgery. I believe these problems would have been worse if I had been less active, but who really knows??? Pain is so subjective, but the less I think about it, and the more I keep moving, the less pain I have.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  9. #9
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Please let us know how you do in the competition

    Melissa

  10. #10
    Join Date
    May 2009
    Posts
    3,745
    hi twisted
    sorry the medical community has been a disappointment and no help to you...i think that happens more often than reported...for all kinds of conditions...

    did they get specific as to why the risks would outweigh the benefits of treatment?

    i am amazed that you can lift weights with your curve...shocked that it doesnt make it worse...but i'm glad that you found something that helps you....

    best regards
    jess

  11. #11
    Join Date
    May 2010
    Location
    Burlington, Ontario
    Posts
    27
    Your responses are all so encouraging. Thank you.
    I have not found so far that lifting has had a negative effect on my curve. O course, form and control are very important, but that is true for anyone in a gym. I see many with what I assume are normal spines that look like they are going to hurt themselves if they keep flinging the weights the way they do. Results are not instantaneous and one must proceed as one's body tells them and lets them. Patience is a must.
    Still, I have found that am in more pain being idle than active.
    I want to add, by the way, that it appears many believe that lifting is detrimental to the aging spine. Restistance training actually adds to bone density and is often recommended as as people age to maintain bone density and strength. Which isn`t to say everyone must be an ameteur weightlifter, but incorporating resistance training into an exercise regimen is important. In most of our cases, the bigger concern might be injury due to inequitable forces through the spinal axis. This is a technique issue and no one ought to try to lift more than they are able to do comfortably. One should also pursue proper nutrition and a healthy lifestyle at the same time. Excess body weight becomes an everyday strain on the skeleton and smoking is worse.
    But I take everyone's comments under advisement as words of experience. I will see my physician for referral to an SRS doctor.
    Insofar as the doctors' advice on surgery, the upshot appears to be that if I feel I can live as I am, then the pain and risk of surgery miight outweigh living with it. So really its a matter of choosing between what I know and am living with and wat I don't know. I dont know what benefits might be had from surgery, other than a fair bit of time on my back recovering. From that side of it, I really only have the doctors`words upon which to rely that I am better off if I don`t have surgery.
    My competition is July 17. I have been dieting for it since the beginning of April. If I can figure out how, I will post a photo thereafter if any are interested.
    Again, I appreciate everyone`s support and encouragement.
    Last edited by Twisted Lifter; 06-12-2010 at 06:49 AM.

  12. #12
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Twisted,

    First of all, like your username. Cute. Second, would love to see a photo--it's great to think one of our scoli friends could build this much muscle!

    There have been some suggestions here that you could be treated surgically. I'm sure that is true. But it seems to me the key is that your curve is not progressing. If your curve is not progressing and your pain is manageable, you may be better off as you are. I have a 68 degree curve right now without much pain, and if mine weren't progressing I would definitely live with it. It really depends on how well you tolerate the pain.

    As for curve progression in your '50s, it seems like that often tends to happen in women going through menapause. So maybe you will get lucky!

    Thanks for sharing your story. Good luck in the competition!

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  13. #13
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Twisted Lifter,
    It sounds like you are doing the right things-enjoying your life and staying active. Obviously, at your level of weight lifting, you know how to lift correctly, but you probably should ask your Dr. If my Dr. had told me to stop playing golf, I doubt that I would have listened. Continuing to check on the progression (or lack of) is important. My curve was at 70 degrees 8 years ago and I'm happy I didn't have surgery back then. Actually, it really wasn't mentioned since I was active and not in much pain. I think pain, progression, and age are the factors that help one make the decision. If I wait too many more years, since I have minor occasional pain now, the results of the surgery and the recovery time are not as good, according to my surgeon. Once again, good luck! I hope you can send photos. You should be proud of yourself for your dedication.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  14. #14
    Join Date
    May 2010
    Location
    Burlington, Ontario
    Posts
    27
    Down to just under 177. Three weeks to go and two more pounds to lose to make middle weight. Damn, I'm hungry.

  15. #15
    Join Date
    Sep 2005
    Posts
    24
    I feel your pain, I fight in MMA and being out there shirtless I feel normal for once lol but once the fight is over its like ahh man I need to put on a shirt.

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