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Thread: My Way of Coping

  1. #46
    Join Date
    Sep 2011
    Posts
    372
    Quote Originally Posted by jrnyc View Post
    hmmmm....
    how 'bout those who say that the SIZE of the curve does not
    (necessarily) determine the amount of pain...????

    i went to see my surgeon a few weeks ago...first time in 4 years...
    he did X ray, compared it to 2010....very very little increase in
    curves...BUT...i am in WAAAAAY more pain now...and the pain
    has worsened tremendously in the last year or so...

    SO.....even though there has been very little progression, there
    has been a very BIG increase in my pain.

    just sayin'....
    jess


    Hi,


    I am from the UK and am interested to read that there is an increase in your pain and your experience with the consulting surgeon.

    I found out about my scoliosis in my early 30s and my curves of 55T and 35L did not progress until I was 50. After years of accommodation back pain without really knowing why I started getting bad acute pain. On the intervening years I had generally kept fit (nothing major) but I was slim and enjoyed STEP and badminton and gave most exercise classes a go when the opportunity arose. I headed off to physio and there I remain- twice a week - paid for out of my own pocket to ensure continuity etc.

    I am 56 now and have had some monitoring in between- 6 years ago the surgeon told me that I now had a small neck curve but I was stable (head on top of pelvis) and that the deformity was too long (3 curves) for surgical intervention.


    So on I went- now getting a bit down and very very scared of what was happening to my body. A couple of years later I have no neck to speak of - but most of all SO much more pain.

    Back to the surgeon and find that my neck is now 49* - where did this curve come from?? and the others are progressing. What to do now- but the reason I ask is that generally in the UK they don't seem to do surgery for pain - it is much more for stability. Unless you are in your teens when it can affect you so much more cosmetically. I don't know if my neck qualifies me now for being unstable -. I was on the list for a PLIF just to help a bit!- now they said that this might prevent a longer term solution and I have to go back for a further consultation with someone else.

    Did your surgeon suggest that they would operate for the pain even though you are not progressing? I am not sure what I want because it is so complicated but some days I would just like it all to stop.

  2. #47
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,602
    The reason that I had spinal surgery had little to do with the size of the scoliosis curve, but everything to do with the pain. In my case, the curve was not causing the pain, it was the degenerative changes that accompany aging. In my case, the degeneration of the discs with stenosis came first and the curve happened afterwards as a result of asymmetric collapsing of the discs. So, if my back managed to collapse symmetrically, I might not even have scoliosis....but would still have the pain.

    There are people that have large curves and no pain, yet my smaller curves were very painful. Unlike you, I did not have scoliosis when I was younger. I believe that the scoliosis started when I was older, probably in my 50s. Just a guess, but maybe you have some degenerative changes that are causing your pain? Just a guess.

    Good luck. Pain can really compromise quality of life. My pain was at an "8" and I stopped going to social events and spent time in front of the TV propped up on pillows with an ice bag. Bummed.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  3. #48
    Join Date
    May 2009
    Posts
    3,729
    hi burdle
    the scoliosis, degenerative disc disease, listhesis, stenosis, arthritis, etc...is now impacting my daily functioning...i can hardly walk at all anymore....that is a BIG change....
    so that is a major reason for surgery...
    most doctors will ask you about that...whether it has an impact
    on the way you live, the things you can do, etc...

    i have had progression of the curves as well...the rate of progression
    seems to have slowed down somewhat...but the curves have indeed progressed...
    and i have also had a huge fairly recent increase in the amount of pain...

    hope you can find some relief.
    jess...and Sparky

  4. #49
    Join Date
    Dec 2012
    Posts
    24
    Twisted Lifter

    Your story is inspirational and informative. 67 y/o male, 63 degree thoracic, 47 degree lumbar.

    I have been doing symmetry based exercises for about 5 years and started a little resistance training a couple months ago. I am trying to get my legs stronger after left hip replacement surgery 2 months ago. (note: the doc added 1/2" to my left leg and I no longer where a lift).

    In my opinion, if you put the same dedication and effort into daily exercises that focused on muscle, tendon and ligament symmetry, as you did with lifting, then you should be able to "manage" your curves and pain successfully. I would be happy to share my program with you if you send an email to rkochis65@gmail.com.

    Here is simple exercise I do several times a day.
    http://www.youtube.com/watch?v=7l2TLBkFnP0

    Has not changed my spine either positively or negatively, but it has improved my posture.
    Best of luck in the future.

  5. #50
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    That just sent red flags up in my mind... I'd be careful if I were you. I am with Jess-- my scoli doctor had said when you get to the point when your scoliosis is impacting your quality of life, it's time to seriously consider surgery. If you stay home more, avoid certain settings or seeing some of your friends, because you are embarrassed by what you can no longer do or it's painful for you to go out (sitting in bleachers, and so on) then you need to weigh what is best. Sitting at home and still progressing or doing something to at least stop the progression and hopefully alleviate at least some of the pain.

    I have no problem with exercising to increase your leg strength, etc., as even with surgery, you'll need that. But as far as it managing your pain and curves, there have just been too many threads and posts to the contrary on here for me to see that posted and not put out a caveat. Best wishes for your scoli journey and all the decisions that come with it. None of it is easy -- but no one has ever promised us an easy life. Challenges make us stronger, and those of us who have been through the surgery scenario have become very strong indeed. Again-- best wishes.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  6. #51
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,322
    I was one who “ignored” my scoliosis as much as I could, and skied hard for many years....Chased powder, did many high jumps, and basically stayed as active as I could. I always felt better when I skied, exercise is so beneficial for us....

    Some of the landings off the high jumps produced very high damaging forces, and I guess I can put some of the blame of this activity on destroying my discs. I had 4 lumbar herniation’s verified by CT back in 2002 and struggled and battled sciatica for 6 years up until my surgeries in 2008. I know you are lifting heavy weights.....and should be aware of the fact that we do get older, and degeneration can take a foothold. I had twin 70 degree balanced “S” curves, with perfect plumb, but you have to realize that our discs are compromised with these curves, and loads are higher because of the imbalance and wedging. In my coronal x-ray, you will notice 1 screw is missing, (zoom in, these are digitals) You will notice one level that is extremely wedged, and since there wasn’t a clear trajectory, that screw was omitted per my hospital reports.

    Severe nerve related 10 level pain events are indicators that something is seriously wrong. They can come and go as healing does happen but these are warning signs. I fought my battle as long as I could and wouldn’t change a thing since I was a skier....Only dedicated skiers will understand this, and actually had a write up in the local newspaper in the ski section. I was basically labeled as the “Die hard skier” since I was fused with 34 screws and still hit the slopes. My wings are now clipped....the jumping had to come to an end at some point I guess....I’m in the red jacket. This was after my surgeries.
    https://www.youtube.com/watch?v=4tEy...o&feature=plcp

    I was also rejected by my surgeon for being too dangerous since my lumbar spine was in rough shape.....maybe I proved that over-exercise or incorrect exercise isn’t the greatest thing. I begged and he stated that he would look at my blood work to make a decision. 3 weeks later I went in for a visit and he told me that he could tell I was a lifelong skier and that I was in great shape.

    I broke my shoulder and arm 10 days before my scoliosis surgeries. You might say I was pushing the limits and was sort of a last blast thing up on the hill. I skied out on my own and drove home....My spine pain overrode the arm and I didn’t even bother to go to the doctor....I was doing that already, just not for the arm. The look on my surgeons face after seeing my arm was priceless. What could I say?

    I guess what I’m trying to say is to take it easy....(smiley face) I also had the ROCK hard body with thighs made of steel....and kind of miss it....and could build things up again if I wanted but probably wont....I guess that’s in the past now....

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #52
    Join Date
    Mar 2010
    Posts
    2,748
    Twisted,
    Your story has always inspired me! While from the back you can see a curve, it looks NOTHING like 70o! Mine looks about like that only higher and my curve is half yours! Your torso from the front looks pretty uniform, unlike mine. Since you've done your competition has your pain increased at all?

    Jess,
    I didn't know you finally went and had new x-rays! Although I'm glad to hear that your curve hasn't progressed, I'm really sorry to hear how bad your pain has gotten. Are they still pushing for you to have surgery?

    Honestly, my pain gets really out of control sometimes. That's partly why I quit coming on here so often. It kept me thinking about it. My neck and upper back bones hurt badly sometimes... my muscles around the spine are just out of control sometimes even with the Botox and trigger point injections. My lower back hurts constantly. My walking is badly affected by "something". I'm almost to the point where I need a walker on some days. The last doctor I saw checked my leg strength and said they felt strong enough, yet they drag when I walk. He thought it might be something with my brain... I have no idea and haven't seen the neurologist since he sent me to the geneticist. My Dystrophy tests both came back okay and my CMT test hasn't come back yet and it's been months. It makes me wonder if they lost my blood sample.

    I hope all are well. We can't give up but just keep trying to push through. Twisted, you are an inspiration, as are you Ed, Jess, and everyone else on here that keep regular updates and encourage one another despite the circumstances.

    (((HUGS))) to you all!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #53
    Join Date
    May 2009
    Posts
    3,729
    hey Ed

    "....rock hard body...."
    "...thighs of steel...."

    really....? you want that back...?
    that was nice when you are
    in your 20's....but now...?
    who needs it? who wants it?
    it is alot of work...and the older one
    gets, the more work it requires!
    you know some people are really
    impressed with fancy shiny and new
    cars.....but a good old car will still
    get you there.
    give me the good old reliable
    classic any day....
    in case you are giving them away,
    i'll take a nice old classic T bird.
    they are still the best!

    and by the way...you, Ed, are a classic.

    woofs

  9. #54
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,322
    Quote Originally Posted by jrnyc View Post

    "....rock hard body...."
    "...thighs of steel...."
    Yup.....4340 chrome moly steel....

    Now, if I can manage to suck my beach ball in, I’m almost there....(smiley face)

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #55
    Join Date
    May 2010
    Location
    Burlington, Ontario
    Posts
    32
    To all who have said I have inspired them some how, I thank you for the kind words. It was never my intent, but a pleasant side effect.
    My pain is about the same as it ever was. Certainly no worse.
    It is important to say, though, that I never considered lifting as a way of managing or controlling the curve. It is stable, but it would be specious logic to conclude that lifting did that. However, I believe regular fitness and activity has positively contributed to better mobility and overall health. I encourage everyone to find something they enjoy and keep at it.
    Rock hard body and thighs of steel are not required goals. Feeling good, energetic and full of life would be better ones.

    Quote Originally Posted by rkochis View Post
    Twisted Lifter
    In my opinion, if you put the same dedication and effort into daily exercises that focused on muscle, tendon and ligament symmetry, as you did with lifting, then you should be able to "manage" your curves and pain successfully.
    I appreciate your opinion, but clearly you do not bodybuild. Lifting always focusses on symmetry of muscles, tendons and ligaments. The video showed someone doing exercises that might have been better served with some resistance. It need not be massive weights, but it was nothing that couldn't be done in a gym as well. Symmetry and balance are key principles of bodybuilding and lifting. I do manage my curves and pain successfully and never suggested otherwise.
    Again, I always encourage people to find something they enjoy and keep at it. Don't let your limitations define you. Focus on what you can do rather than what you can't.
    Last edited by Twisted Lifter; 11-04-2014 at 01:26 PM.

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