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Thread: National Scoliosis Foundation

  1. #31
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    Oh okay. Yes I see that I was incorrect. With three structural curves it is adult AIS.

    If the surgeons are saying they operate on adult AIS only for reasons other than pain then I consider that clearly a naked cost-saving measure given I think most adult scoliosis fusions in the US are done essentially for pain... there are relatively few adult cases of large curves without pain based on the testimonials here. That is a left-handed way to avoid most adult fusions in my opinion.

    Now I see your point... they are specifically excluding pain as a reason for fusion. In that case, they are leaving non-surgical people with nothing although they do have ground to stand on that long term PT might have a bad track record of keeping people off the table due to pain.

    I think you have a leg to stand on and so do they.

    What is the end game if PT never pans out as a long-term effective treatment for pain? Then non-surgical people are high and dry. They have to hope their curve progress so they can access fusion.

    Maybe you are a candidate for tethering? That might be a solution for you and others who are in pain but don't want fusion. Do they do tethering in the UK?
    Last edited by Pooka1; 01-10-2017 at 10:06 AM.
    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. #32
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    I don't know if PT has been investigated in the long term as a treatment to avoid surgery due to pain. It might be just anecdote. But there are certainly people here on the group who apparently could not get relief from PT and were driven to fusion. But that doesn't mean PT can't work for other people. The question is what is its track record for keeping adults above the surgery threshold off the table.
    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."

  3. #33
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    Quote Originally Posted by Pooka1 View Post
    I don't know if PT has been investigated in the long term as a treatment to avoid surgery due to pain. It might be just anecdote. But there are certainly people here on the group who apparently could not get relief from PT and were driven to fusion. But that doesn't mean PT can't work for other people. The question is what is its track record for keeping adults above the surgery threshold off the table.
    I cannot see why PT cannot be offered as a treatment for pain from Scoliosis NOT a treatment for the scoliosis itself.

    Physio is recommended for all sorts of trauma. Well as far as I am concerned Scoliosis is an ongoing trauma with episodes of acuteness. The efficiacy of PT for preventing a curve getting to surgical levels is, in my opinion, an irrelevance. We know that people with small curves can be in a great amount of pain. In some cases we may well have patients who despite having PT end up at surgical levels (and have surgery) but so what!. This does not mean that the PT did not help 'along' the way. It is treatment itself that I am arguing for - the NHS is offering 'no treatment' except surgery and they decide the surgical candidacy.

    It is really a cost thing, but my opinion is that if a patient is in less pain - they are likely to be less of a drain on medical resources across the whole spectrum.

    for example the NHS is perfectly happy to issue me with pain killers which rot my stomach and need assessment by a Gastroenteritis consult; it is perfectly happy to diagnose my mood as depressive and send me to a NON specialised counsellor who will not understand the medical model and offer no real help; it is perfectly happy to watch me trail around endless hospital departments (urinary incontinence, foot specialists, knee specialists, women's health) all who present with blank faces offering me their dodgy opinion on my back, and pass me on (with some sympathy) but it is not prepared to allow me decent physio to help with PAIN- which drives me to the other departments in the first place! - I despair!!!

  4. #34
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    Does the NHS cover PT for a herniated disc? Do you have any herniated discs? Maybe you can go that angle.
    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."

  5. #35
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    Quote Originally Posted by Pooka1 View Post
    Does the NHS cover PT for a herniated disc? Do you have any herniated discs? Maybe you can go that angle.
    Hi,

    That would only be temporary - it is the whole issue of effective PT being available for a scoliosis sufferer. That means targeted continuous ( i.e) same therapist each time . Why should we have to try to buck the system? My points are not really meant to be my problem- I am exposing the issue for all of us.

  6. #36
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    Quote Originally Posted by burdle View Post
    Hi,

    That would only be temporary - it is the whole issue of effective PT being available for a scoliosis sufferer. That means targeted continuous ( i.e) same therapist each time . Why should we have to try to buck the system? My points are not really meant to be my problem- I am exposing the issue for all of us.
    In the U.S., insurers typically only cover ~12 visits per year. Therapy is meant to treat the pain with modalities and teach the patient to do exercises to maintain a reduced level of pain.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
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  7. #37
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    Quote Originally Posted by LindaRacine View Post
    In the U.S., insurers typically only cover ~12 visits per year. Therapy is meant to treat the pain with modalities and teach the patient to do exercises to maintain a reduced level of pain.
    That has been my experience.

    Burdle has been going to PT for 8 years, twice a week if I understand her correctly. I think Burdle is arguing that scoliosis is different and if it can be used to avoid surgery, it should be covered forever. Burdle will correct me if I am wrong.
    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."

  8. #38
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    Quote Originally Posted by Pooka1 View Post
    That has been my experience.

    Burdle has been going to PT for 8 years, twice a week if I understand her correctly. I think Burdle is arguing that scoliosis is different and if it can be used to avoid surgery, it should be covered forever. Burdle will correct me if I am wrong.
    Hi,

    That is exactly what I am saying - thanks Pooka1

  9. #39
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    Do you expect to avoid fusion the rest of your life with PT?

    I suspect that besides the short-term model for PT, there is the double payment issue given how many people fail to have their pain controlled by PT and are driven to surgery. That said, surgeons still try to exhaust all conservative methods. The double payment concern doesn't seem to be an issue there or with brace treatment. Insurance covers it.

    There is also the issue of if you continue to do PT the rest of your life, at some point that would cost more than surgery I imagine. It is certainly worth it if you can avoid surgery for life. But I think you are taking a chance waiting because the older you get, the worse your curves and vertebrae become, the most complex the fusion if you are ever finally driven to it.

    I view this trade-off (trying conservative treatments which delay fusion) as the single cruelest aspect facing adult patients. Couple that with little medical consensus on fusion and patients are basically being asked to make a complex medical decision that the doctors can't even make in some cases. They are essentially forced to try to be clairvoyant. Life is REALLY unfair.
    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. #40
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    Quote Originally Posted by burdle View Post

    for example the NHS is perfectly happy to issue me with pain killers which rot my stomach and need assessment by a Gastroenteritis consult; it is perfectly happy to diagnose my mood as depressive and send me to a NON specialised counsellor who will not understand the medical model and offer no real help; it is perfectly happy to watch me trail around endless hospital departments (urinary incontinence, foot specialists, knee specialists, women's health) all who present with blank faces offering me their dodgy opinion on my back, and pass me on (with some sympathy) but it is not prepared to allow me decent physio to help with PAIN- which drives me to the other departments in the first place! - I despair!!!
    This pretty much sums it up. And how are we expected to work while taking meds?

    There should be an adult cut-off point in order that we don’t get rejected for surgery. Something simple, perhaps a 50 degree plus curve at age 50, with 7 level pain.

    I fought the same battle for many years....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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. #41
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    Quote Originally Posted by Pooka1 View Post
    Do you expect to avoid fusion the rest of your life with PT?

    I suspect that besides the short-term model for PT, there is the double payment issue given how many people fail to have their pain controlled by PT and are driven to surgery. That said, surgeons still try to exhaust all conservative methods. The double payment concern doesn't seem to be an issue there or with brace treatment. Insurance covers it.

    There is also the issue of if you continue to do PT the rest of your life, at some point that would cost more than surgery I imagine. It is certainly worth it if you can avoid surgery for life. But I think you are taking a chance waiting because the older you get, the worse your curves and vertebrae become, the most complex the fusion if you are ever finally driven to it.

    I view this trade-off (trying conservative treatments which delay fusion) as the single cruelest aspect facing adult patients. Couple that with little medical consensus on fusion and patients are basically being asked to make a complex medical decision that the doctors can't even make in some cases. They are essentially forced to try to be clairvoyant. Life is REALLY unfair.

    I did pluck up courage to ask about am I leaving things too late and I get varying responses. Most say casually they can do the op at age 80 ( me not them!!) , but I think the NHS may well change guidelines.

    I just don't know what to do- and yes I am expected to work- it all gets a bit overwhelming...

  12. #42
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    Living with scoliosis is like solo kayaking an endless river.... We always have to keep paddling on, uncertain on what might be up ahead, always scared about the rapids. Should we hit that waterfall of surgery, will we make it through ok? Most make it over the falls just fine, but some don’t, but we all have to keep paddling to some extent regardless of the rivers conditions. You can paddle calm sections upstream and avoid the rapids, but the river always runs downstream....

    Ed
    Attached Images Attached Images
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  13. #43
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    Quote Originally Posted by titaniumed View Post
    Living with scoliosis is like solo kayaking an endless river.... We always have to keep paddling on, uncertain on what might be up ahead, always scared about the rapids. Should we hit that waterfall of surgery, will we make it through ok? Most make it over the falls just fine, but some don’t, but we all have to keep paddling to some extent regardless of the rivers conditions. You can paddle calm sections upstream and avoid the rapids, but the river always runs downstream....

    Ed
    That is probably the single most elegant and apt thing I have read in this sandbox in all these years. I consider you the poet laureate of this forum.

    Thank you, Ti Ed.
    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."

  14. #44
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    Thanks Sharon. I wasn’t thinking poetry.....I was thinking more in general, and it applies to all scoliosis patients....

    The irony of it all is that I cant sit in a kayak for more than a minute. (smiley face)

    The medical system seems to treat Physical therapy as a “healing” tool and not a “maintenance” tool. They also set a time limit dictated by insurance companies....So much for health maintenance other than things like cholesterol checks, or colonoscopies. I believe those are free in the US.

    Large curves in adult scoliosis patients create small injuries that happen with mild events. It doesn’t take much to throw us out of whack, and this creates pain through aches and binding....Manipulation through any means can really be helpful, I have had people stand on my back when I wasn’t around a Chiropractor. I would also sit in a chair and twist my upper torso around to crack my back. I did 10 million of these adjustments over 34 years. I have yet to have anyone admit that they did this online.......which is really hard for me to believe.

    Tonibunny was one who knew about the benefits of hot water soaking. When you have nothing, this is the easiest way to pain relief. The tub needs to be deep enough that you can float. Its also very “Zen” which is being oneself, with nothing extra, in harmony with the way things are, looking at life as it is.....Accepting reality, and de-stressing which is so important.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  15. #45
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    Ed you are so right. I'll admit to doing my own adjustments. Before surgery it was all about back pain. All insurance only allows so much per year. So you do your own.
    Here is a question---do you still do adjustments?
    I have had the right shoulder blade get stuck- it is much better since the scapulectomy and muscle transfer but I feel it get locked once in awhile. So I get on the floor and do planks until something snaps in the thoracic and then the pain goes away. I think it is a rib that snaps. It hurts for a second and then relief.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    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

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