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  1. #1
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    Apr 2018
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    Increasing curve but no pain – do they do revision for this?

    I had a fusion with Harrington rod in 1976 to correct a 49 degree lumbar curve. My fusion runs from T8 to L4. I wore a body cast and my curve shifted to 37 degrees in the cast, but remained stable for many years. Then here is a general sense of what has happened:

    1993 – minor car accident, not injured but x-ray showed larger curve and broken rod. I don’t know when the rod broke.

    1998- exam shows curve of 42 degrees
    2014 – curve still at 42 degrees

    Last month: I noticed a sudden shift in the degree of deformity, got in to see the NP at my specialist's office, curve is now 48 degrees. It will take 4 months to get in to see the doctor.
    So my curve has changed 6 degrees in 4 years. I have zero pain or limitations of activity, but I’m very concerned about it progressing 1-2 degrees per year. I’m 64/almost 65 and have osteoporosis, though the NP said that my bone quality looks good due to treatment I’ve been on. I would not be exactly thrilled about jumping into a big surgery, esp. at this age, but what would my quality of life be if my curve keeps progressing? Pretty much all of my relatives have lived into their 90s and I can’t imagine having a 70+ degree curve later in life.

    Does anyone know what the best practices are in a case like mine?
    Thanks,
    Irene

  2. #2
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    Quote Originally Posted by curlygirl View Post
    I had a fusion with Harrington rod in 1976 to correct a 49 degree lumbar curve. My fusion runs from T8 to L4. I wore a body cast and my curve shifted to 37 degrees in the cast, but remained stable for many years. Then here is a general sense of what has happened:

    1993 – minor car accident, not injured but x-ray showed larger curve and broken rod. I don’t know when the rod broke.

    1998- exam shows curve of 42 degrees
    2014 – curve still at 42 degrees

    Last month: I noticed a sudden shift in the degree of deformity, got in to see the NP at my specialist's office, curve is now 48 degrees. It will take 4 months to get in to see the doctor.
    So my curve has changed 6 degrees in 4 years. I have zero pain or limitations of activity, but I’m very concerned about it progressing 1-2 degrees per year. I’m 64/almost 65 and have osteoporosis, though the NP said that my bone quality looks good due to treatment I’ve been on. I would not be exactly thrilled about jumping into a big surgery, esp. at this age, but what would my quality of life be if my curve keeps progressing? Pretty much all of my relatives have lived into their 90s and I can’t imagine having a 70+ degree curve later in life.

    Does anyone know what the best practices are in a case like mine?
    Thanks,
    Irene
    Hi Irene...

    Even if your curve continues to increase (and there's no guarantee it will), at the current rate, it would project at 78 degrees by the time you're 95. A lot of people live with curves much larger than that, and most experts will tell you that there's no significant impact on one's heart and lungs until their thoracic curve reaches 90 degrees. If you have significant pain, than you might want to consider revision surgery. If you have no pain, or your pain is easily managed, I personally would not consider having surgery. That's my $.02.

    Best of luck with your decisions.

    --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

  3. #3
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    Quote Originally Posted by LindaRacine View Post
    Hi Irene...

    Even if your curve continues to increase (and there's no guarantee it will), at the current rate, it would project at 78 degrees by the time you're 95. A lot of people live with curves much larger than that, and most experts will tell you that there's no significant impact on one's heart and lungs until their thoracic curve reaches 90 degrees. If you have significant pain, than you might want to consider revision surgery. If you have no pain, or your pain is easily managed, I personally would not consider having surgery. That's my $.02.

    Best of luck with your decisions.

    --Linda
    Hi Linda,

    Thanks for weighing in. What is life like for people with curves in the 60s, for example, if mine projects out to the 70s in very old age? In addition to heart/lung issues, I'm worried about issues with my organs lower down since the apex of my curve is at L5, one level below the fusion. Also, are these people able to walk? I'm concerned about loss of mobility as well.

    Thanks,
    Irene

  4. #4
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    Hi Irene...

    I do know plenty of elderly people with large curves who are able to walk and move around easily. It's possible that a large lumbar curve might affect the abdominal organs, but there's relatively little research. It seems that the only people talking about the affect of scoliosis on abdominal organs are chiropractors.

    One of the probable causes for the increase in Cobb angle is that you have degeneration below your fusion. If that's the case, revision surgery would almost certainly involve an extension of your fusion to the sacrum. While that's not the end of the world, it can severely change your function. I was originally fused to L3, and then later extended to the sacrum. I really hate the additional loss of flexibility. I honestly didn't have much choice, but if I did, I would definitely not choose to have more surgery.

    --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

  5. #5
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    Apr 2018
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    Hi Linda,

    In many ways the prospect of growing older with a potentially increasing and very apparent deformity, and the daily emotional and psychological toll that this takes scares me as much as the surgery does. What if I were to leave it alone for now and then later develop pain or other issues requiring the surgery at, for ex, age 70, when recovery would be even more difficult? These are the kinds of thoughts that I am grappling with.

    Right now, all of my bending is from the hip and I have no trouble putting on shoes and socks, picking up things, etc. What is like for you to be fused to the sacrum as far as the loss of mobility that you experienced?

    Irene

  6. #6
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    Quote Originally Posted by curlygirl View Post
    Hi Linda,

    In many ways the prospect of growing older with a potentially increasing and very apparent deformity, and the daily emotional and psychological toll that this takes scares me as much as the surgery does. What if I were to leave it alone for now and then later develop pain or other issues requiring the surgery at, for ex, age 70, when recovery would be even more difficult? These are the kinds of thoughts that I am grappling with.

    Right now, all of my bending is from the hip and I have no trouble putting on shoes and socks, picking up things, etc. What is like for you to be fused to the sacrum as far as the loss of mobility that you experienced?

    Irene
    Everyone's mobility is a little different. It depends on things like how many and which levels are fused, the apex of the coronal curve and the sagittal curve, weight, how flexible you are before fusion, etc. I need tools to get dressed. I cannot easily get to my right foot, and have no ability to put on a sock without a device. If I were to sit down on the floor (something I avoid at all costs), getting back up is impossible without a chair or something on which to brace myself. Even then, it's a really awkward process. Not impossible, but it is difficult to wipe my butt.
    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

  7. #7
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    Mar 2010
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    Ottawa, Canada
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    Aging with Harrington Rod

    Quote Originally Posted by curlygirl View Post
    Hi Linda,

    Thanks for weighing in. What is life like for people with curves in the 60s, for example, if mine projects out to the 70s in very old age? In addition to heart/lung issues, I'm worried about issues with my organs lower down since the apex of my curve is at L5, one level below the fusion. Also, are these people able to walk? I'm concerned about loss of mobility as well.

    Thanks,
    Irene
    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
    [FONT="Comic Sans MS"]
    Spinal fusion 1961
    HR 1981 T3-L4
    Thoracic curve 75Cobb; post 40
    Present: Thoracic 60Cobb Lumber?
    [FONT]

  8. #8
    Join Date
    Sep 2011
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    372
    [QUOTE=elizabeth1st;170538There is little information on aging scoliosis or post Harrington rod long term outcomes.
    Regards, Susan[/QUOTE]

    Yes there is very little info on post Harrington Rod outcomes- the scammers use what negative info there is to scaremonger and promote their scam cures. The orthos who do fusion use the later 'successes' of pedicle screws and only talk of 16 year follow ups on teenagers which takes us to about age 40. there is nothing for oldies- with or without surgery.

    I have just been on holiday and there was an old man with a large thoracic and large lumbar and to walk he rocked from one foot to the other . Apart from how he looked cosmetically he had great issues with mobility. He is obviously balanced in the sagittal plane but in the coronal plane he has great difficulty. Scares me as I have balance curves progressing...

  9. #9
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    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."

  10. #10
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    Nov 2020
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    5

    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.

  11. #11
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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

  12. #12
    Join Date
    Sep 2011
    Posts
    372
    Quote Originally Posted by curlygirl View Post
    I had a fusion with Harrington rod in 1976 to correct a 49 degree lumbar curve. My fusion runs from T8 to L4. I wore a body cast and my curve shifted to 37 degrees in the cast, but remained stable for many years. Then here is a general sense of what has happened:

    1993 – minor car accident, not injured but x-ray showed larger curve and broken rod. I don’t know when the rod broke.

    1998- exam shows curve of 42 degrees
    2014 – curve still at 42 degrees

    Last month: I noticed a sudden shift in the degree of deformity, got in to see the NP at my specialist's office, curve is now 48 degrees. It will take 4 months to get in to see the doctor.
    So my curve has changed 6 degrees in 4 years. I have zero pain or limitations of activity, but I’m very concerned about it progressing 1-2 degrees per year. I’m 64/almost 65 and have osteoporosis, though the NP said that my bone quality looks good due to treatment I’ve been on. I would not be exactly thrilled about jumping into a big surgery, esp. at this age, but what would my quality of life be if my curve keeps progressing? Pretty much all of my relatives have lived into their 90s and I can’t imagine having a 70+ degree curve later in life.

    Does anyone know what the best practices are in a case like mine?
    Thanks,
    Irene
    Can I ask how you noticed a sudden shift in deformity if you have no pain and no limit on activities? Bear in mind there is a 5% tolerance in the measurement of a curve anyway- is the NP a qualified person to measure a curve?

    I am like you facing an old age with a progressive curve - 59% now at 59 but I have not had Harrington rod surgery and have significant loss of mobility and loads of pain ( in UK) . It may be that the newer instrumentation in a revision can offer you a more secured future.

  13. #13
    Join Date
    Apr 2018
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    23
    The NP is supposedly qualified to measure the curve but I would have preferred the doctor. In the last few months I noticed that my clothes are suddenly fitting me worse and making the curve much more visible, where previously I was better able to hide it. There are things I know I wore a few months ago where it didn't show unless you were looking for it, and now I feel like I can no longer wear those things. I keep buying looser and looser tops. My husband noticed it as well, and there is a fold in the front on my right side that wasn't there before - these are the things that alarmed me and made me at least get an x-ray so I'd have data. I'm a fairly active person - like to take vacations that involve a lot of walking, for example, and I have no problems doing so, but I'm scared of a future where things could get worse, both cosmetically and structurally, where it could impact my activities down the line before I'm super old. I had envisioned spending much of my 70s and 80s traveling, as my long-lived relatives have done.

    I keep reading conflicting things about the risks of this surgery at my age. I've been on websites from some of the top surgeons in NYC, for example, and they speak of good outcomes, but complication rates between 20-80%, which is a huge range. And I don't know if they are talking about temporary minor things, or huge life-altering things.

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