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

  1. #1
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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 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.

  4. #4
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    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.

  5. #5
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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

  6. #6
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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

  7. #7
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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

  8. #8
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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

  9. #9
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    Hi Linda,

    Thank you for sharing this information, and in such a personal way. I appreciate it very much. There are really no easy answers with this. I will plan to visit some of the better-known doctors later this year to see what they think. I keep wondering if there is anything I can do to stop further progression. I'm assuming Schroth is for the unfused only.

    Irene

  10. #10
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    Quote Originally Posted by curlygirl View Post
    I'm assuming Schroth is for the unfused only.

    Irene
    I am not sure the Schroth people claim it is only for unfused people but that is not relevant to the fact that Schroth doesn't have any evidence it can stop progression. Plus it is pricey.
    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."

  11. #11
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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]

  12. #12
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    Ha ha, I can so relate to the butt wiping comment and the difficulties getting socks on after beong fused to the sacrum 3 years ago then left SI joint fusion in December! Have to ger in some strange positions to try to get my left sock on!!!

    Quote Originally Posted by LindaRacine View Post
    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.
    Juvenile Idiopathic Scoliosis diagnosed aged 6/7
    Milwaukee brace 1980 - 1984, Fused T2 - L3 with Harrington Rod 1984, 10 rib costoplasty 1999, artificial disc at L3/L4 2003, extended fusion to L5 2006.
    2015 - Sagittal plane imbalance correction by insertion of 30 degree hyperlordotic cage at L5/S1 level (anterior approach) with fixation to pelvis (posterior approach) now fused T2 to sacrum.
    2017 - October - SI joint fusion - left side
    2017 - December - Revision of failed left SI joint fusion

  13. #13
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    [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...

  14. #14
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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."

  15. #15
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    Correlation of Lowest Level of Instrumentation to Functional Outcomes and Risk of Further Spine Surgery in AIS with Minimum 40 Year Follow-up
    Sarah T. Lander, MD; Caroline Thirukumaran; Krista Noble, BS; Ahmed Saleh, MD; Addisu Mesfin, MD; Paul T. Rubery, MD; James O. Sanders, MD

    Summary
    In long-term follow up of patients undergoing a posterior spinal fusion with Harrington instrumentation comparing the lowest instrumented vertebra (LIV) with patient reported outcome measures and the need for additional surgery, patients with a lower LIV had a higher rate of additional surgery and lower functional outcomes than those with higher LIVs. This could be because of the instrumentation, the fusion, or the nature of curves requiring instrumentation lower on the spine.

    Hypothesis
    The lower the level of instrumentation the more likely the patient is to receive an additional spine surgery and the lower the patient reported functional outcomes.

    Design
    Long-term follow-up

    Introduction
    There is uncertainty in adolescent idiopathic scoliosis (AIS) instrumentation and fusion how the long-term outcomes relate to the level of instrumentation including pain and the need for further surgery.

    Methods
    We identified records of 314 patients treated by Louis A. Goldstein with Harrington instrumentation and fusion between 1961 and 1977. A search was performed identifying the patients who were then contacted for various assessments including patient related outcomes. This analysis compares the lowest level of fusion with the Oswestry Disability Index (ODI) and the SRS-7 using bivariate and multivariate analysis. (The ODI and SRS forms are two questionnaires given to patients after surgery so see how they are doing. The answers are scored, combined and then analyzed with a statistical program. With the ODI, lower scores indicate better function and with the SRS form, higher scores are best.)

    Results
    We identified 91 living and 6 deceased patients with follow-up from 40 to 56 years and current patient age from 52 to 71 years old. 81 completed the outcome questionnaires. In those without additional surgery, those with LIV L3 and above had average ODI of 14.12 and SRS-7 of 23.3 compared to LIV L4 and below having 17.9 and 22.7 respectively. 6/47 or 12.8% with LIV L3 and above had further surgery compared to 13/34 or 38.2% L4 and below. Those with LIV L4 and below had 2.4 times higher odds of receiving additional surgery. Patients receiving additional surgery compared to those who did not had an average ODI of 22.8 vs 12.8 and SRS-7 of 19.6 vs 23.1. ODI disability comparison comparing those without to those with additional surgery showed 73% vs. 42% minimum disability, 23% vs. 53% moderate disability, and 2% vs. 5% severe disability.

    Conclusion
    In long-term follow up patients with lower instrumentation levels had a higher rate of receiving additional surgery and lower functional outcomes than those with an LIV higher on the spine. Those who received additional surgery had lower functional outcomes than those without. There were higher ODI and lower SRS scores in those with LIV L4 or lower compared to L3 and above in patients not receiving additional surgery, but differences were not large or statistically significant.
    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."

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