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Thread: Increasing curve but no pain – do they do revision for this?

  1. #16
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    The issue with long term seems to be curve type is a major factor. That is, if just the thorax is involved, even the H-rods do a reasonable job. Once you involve the lumbar, H-rods and newer instrumentation struggle.

    Some people with large curves especially lumbar probably do better without surgery. But people with T curves seem have a net benefit from surgery.

    So it is more curve location that determines destiny rather than treatment mode.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #17
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    Nov 2020
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    Increasing curve

    I'm new to forum. I had Harrington rod surgery in 1975 at 16 yo. Curve was reduced from 80 degrees to 55. I was told it would not get worse. Now it's 65 degrees. I'm 61. No pain, but I'm afraid curve will increase. Any thoughts? Also, how do women deal with clothes/poor self-image? I'm a size small but always have to get medium because of right hump. My torso is also truncated, so I feel like my chest is collapsing into my waist. Not looking for any surgery, but physical and emotional support. Thanks

  3. #18
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    illinois
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    Having just doing another revision of my scoliosis surgery for a similar situation, I am not sure if anything other than surgery can help with issues like that. I was collapsing like that and I couldn't live like that.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  4. #19
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    Quote Originally Posted by sherries View Post
    I'm new to forum. I had Harrington rod surgery in 1975 at 16 yo. Curve was reduced from 80 degrees to 55. I was told it would not get worse. Now it's 65 degrees. I'm 61. No pain, but I'm afraid curve will increase. Any thoughts? Also, how do women deal with clothes/poor self-image? I'm a size small but always have to get medium because of right hump. My torso is also truncated, so I feel like my chest is collapsing into my waist. Not looking for any surgery, but physical and emotional support. Thanks
    45 years with no pain is incredible! I would chalk that off as a huge success.....Who did your surgery and where was it done?

    Welcome to the forum!

    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

  5. #20
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    Quote Originally Posted by jackieg412 View Post
    Having just doing another revision of my scoliosis surgery for a similar situation, I am not sure if anything other than surgery can help with issues like that. I was collapsing like that and I couldn't live like that.
    sorry I don't know how to use this forum or see responses or reply?


    dr hugo kiem Columbia presbyterian hospital did surgery
    Last edited by sherries; 12-10-2020 at 05:54 PM.

  6. #21
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    Nov 2020
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    Quote Originally Posted by jackieg412 View Post
    Having just doing another revision of my scoliosis surgery for a similar situation, I am not sure if anything other than surgery can help with issues like that. I was collapsing like that and I couldn't live like that.

    I checked my medical records. I had Harrington Road T7-L2. Curve went from 80 to 55 but now is 65.

  7. #22
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    Nov 2020
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    increasing curve

    Quote Originally Posted by elizabeth1st View Post
    Hi Irene
    Almost 9 years ago I spoke with a scoliosis specialist in Toronto. Although my primary curve has increased ( not sure the degree now but quite a bit more than the corrected 40 something), the doc felt surgery was not indictated as I am functional and largely pain free). I am 72. My first surgery was in 1961 and 2nd 1981
    I have and continue to have a comfortable life. Do I like my rib hump, flat back, my terrible posture, not at all. But...
    I am happy to chat.. There is little information on aging scoliosis or post Harrington rod long term outcomes.
    Regards, Susan
    I would love to chat with someone. I'm in similar situation and curve. sherrie
    Last edited by sherries; 12-10-2020 at 05:54 PM.

  8. #23
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    Quote Originally Posted by sherries View Post
    I would love to chat with someone. I'm in similar situation and curve. sherrie xxx-xxx-xxxx thanks
    Hi Sherrie...

    You might want to edit your post to remove your phone number. Unfortunately, there are people who may try to take advantage of you.

    Regarding your scoliosis, I wouldn't personally worry about a 10 degree increase over 45 years. It's possible that your curve will continue to increase, but the risk of your curve getting to a level that might affect your physical health, is pretty minimal. I get that the deformity bothers you, but adult scoliosis surgery is relatively high risk. There's a very real possibility that the surgery might cause long-term pain or other permanent complications. You might want to consider finding a psychologist who specializes in treating patients with body image issues. I've hated by body image for most of my life, but at some point, I learned that the people I want to be friends with don't judge me for how I look.

    Best of luck.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  9. #24
    Join Date
    Nov 2020
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    5
    [QUOTE=sherries;173138]sorry I don't know how to use this forum or see responses or reply?


    dr hugo kiem Columbia presbyterian hospital did surgery

  10. #25
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    May 2008
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    reno,nevada
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    Sherrie, Great chatting with you.

    Tomorrow, call me and we will set up your own thread.

    If you can get the 3yr old Dr Errico x-ray files selected off the disc, then you can either load them here, or e-mail them. I can help you with all of this. You just need a computer with a drive. Look for the coronal and sagittal views. Front and side views. The side views are very important.

    How interesting that we are both S curve patients from the 1975 scoliosis time period. (and 15 miles from one another) It's a small world.

    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

  11. #26
    Join Date
    Apr 2018
    Posts
    23

    Core stabilizing PT, and is guitar playing bad for us?

    I'm the original poster on this thread and haven't visited this forum in a long time. I feel like my curve has been getting worse over the past year but I haven't been to a doctor recently to have it measured. I'm planning on getting an appointment soon but I guess it's going to be info only since it's unlikely anyone would recommend surgery. I'm now 67. I have developed pain in my right lower leg and was sent to a pain management practice by my PCP. After doing a lumbar MRI and a lot of analysis, they found some degenerative disc disease and their official diagnosis was lumbar radiculitis. They gave me a steroid injection in L5 and I feel a lot better and they have a specialized spine PT practice that seems very good. They are doing some manual therapy and also giving me core stabilizing exercises. But once more I'm tossing clothing and getting looser and looser stuff and it's kind of depressing. I'm hoping that the core stabilizing exercises could prevent the curve from shifting more but does anyone know if that's the case? The PT seems to think so. If that is really the case I wish an ortho would have sent me to PT years ago.

    Also, over the past year I have been taking classical guitar lessons. I have been careful to watch my posture and have an ergonomic guitar support that fits on the bottom of the guitar with suction cups and sits on the thigh. This secures the guitar in place so that I'm not bending. I've had my husband sneak random peeks at me and he thinks my posture looks good. However, I do know that you have to look left a lot when playing and maybe look down a bit, but I'm pretty confident I'm not bending my back. Am I missing something and could playing the guitar be harmful?

    Thanks much,
    Irene

  12. #27
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    Northern California
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    Quote Originally Posted by curlygirl View Post
    I'm the original poster on this thread and haven't visited this forum in a long time. I feel like my curve has been getting worse over the past year but I haven't been to a doctor recently to have it measured. I'm planning on getting an appointment soon but I guess it's going to be info only since it's unlikely anyone would recommend surgery. I'm now 67. I have developed pain in my right lower leg and was sent to a pain management practice by my PCP. After doing a lumbar MRI and a lot of analysis, they found some degenerative disc disease and their official diagnosis was lumbar radiculitis. They gave me a steroid injection in L5 and I feel a lot better and they have a specialized spine PT practice that seems very good. They are doing some manual therapy and also giving me core stabilizing exercises. But once more I'm tossing clothing and getting looser and looser stuff and it's kind of depressing. I'm hoping that the core stabilizing exercises could prevent the curve from shifting more but does anyone know if that's the case? The PT seems to think so. If that is really the case I wish an ortho would have sent me to PT years ago.

    Also, over the past year I have been taking classical guitar lessons. I have been careful to watch my posture and have an ergonomic guitar support that fits on the bottom of the guitar with suction cups and sits on the thigh. This secures the guitar in place so that I'm not bending. I've had my husband sneak random peeks at me and he thinks my posture looks good. However, I do know that you have to look left a lot when playing and maybe look down a bit, but I'm pretty confident I'm not bending my back. Am I missing something and could playing the guitar be harmful?

    Thanks much,
    Irene
    Hi Irene...

    So many of us older folks feel like our curves are worsening. You should definitely get evaluated by your specialist and have full spine radiographs taken. While it's possible that your curve is getting worse, the more likely culprit is a loss of muscle tone due to age. If that's the case, welcome to the club to which none of us want to be members. In the meantime, I'm delighted to hear that the injection helped and continues to help, and that your PT exercises help with both your pain and feeling of degeneration. Hope you'll keep us posted.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #28
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    Apr 2018
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    23
    Thanks, Linda! I'm just about to make an appointment to get checked out. Have you ever heard of playing guitar being contraindicated for scoliosis patients? I just hope I'm not doing anything to make matters worse - wondering if you've run into that question before.

  14. #29
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    Quote Originally Posted by curlygirl View Post
    Have you ever heard of playing guitar being contraindicated for scoliosis patients?
    Nope. I think there are some instruments that might be an issue, but probably only if they're played for many hours a day, but I can't imagine that guitars would be a problem. Play on!
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  15. #30
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    Apr 2018
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    23

    Update March 2021

    I went to get a checkup last week and saw Dr. William Stevens here in Phoenix. When I saw him two years ago, he said that he could do a conservative revision surgery to halt progression, as I posted in another thread at the time. I don't think I mentioned this, but shortly after that suggestion we took a "field trip" to NYC where I saw Dr. Lonner and Dr. Cunningham (HSS) to get their opinions. Of course it was also a fun vacation and chance to see some shows, so it worked out great (this was pre-Covid, Spring of 2019). Both docs thought that I was very functional and in the absence of pain shouldn't do anything - basically agreeing with those of you who responded on this forum. This was before I developed severe leg pain and started going to pain management and PT a couple of months ago.

    I had a recent lumbar MRI that I brought to Stevens from the pain mgmt. practice, and he also took x-rays. This time he was very emphatic, not just offering optional surgery, but saying that I needed to do it. For him the presence of pain is a game-changer, along with my age and bone density status. He says the images show that the disc below my fusion is both moving out to the side AND rotating and that is what's causing my pain and increased deformity. He says that epidural shots from pain practices are just band-aids that will last decreasing amounts of time each time, and that because I have osteoporosis which is still OK for him now, his exact words were "this is the inflection point." He said that the rotating disc could fuse itself in an out-of-place way to the sacrum, which would be even more problematic.

    He knows I'd like to avoid surgery but he said the sooner the better. Ugh. I would definitely like to get a second opinion on this or maybe a third, but the options in AZ are limited. You can't get in to see Dennis Crandall because a somewhat uninformed NP is his gatekeeper. I also heard that he's getting away from surgery and mostly managing the practice - this from his former MA who coincidentally turned up as the MA at my gyn office! The pain mgmt practice I go to is from Barrow Neurological, which is a large and reputable institution here in Phoenix. It looks like their top scoli person is named Kakarla, but I have never heard anything about him before even though website says he does complex spine surgeries. Might he just be good for an opinion? Otherwise I'm looking at doing e-consults with the NYC doctors. Sorry so long. Any thoughts/comments would be most appreciated!

    Irene

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