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Thread: National Scoliosis Foundation

  1. #16
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    Quote Originally Posted by burdle View Post
    I don't think we should confuse 'cure' with ' treatment'!. My 'beef' is that because we have no cure we don't bother with investigating treatment other than with NSAIDS or OPIODS. Because manual therapy costs money and because conservative therapy insists on evidence based results we have no targeted therapy available and so become victims to charlatans. I benefit from manual therapy because it helps me move muscles locked in spasm that I can't move myself doing ordinary exercise, thus I get pain relief. Patients like me should not be denied access to this. ( I know I can pay for private treatment but this itself is limited because private works on the same model as public) Manual therapisst do not get involved in scoliosis treatment because the system itself does not get involved.
    Patients not at surgical level OR patients like me who are but are avoiding surgery should not be denied treatment!
    @Pooka - I could email it to you if you like?
    I would say you are very lucky that any conservative treatment works for you. Here in the US, I believe all manner of conservative therapies are covered (except Schroth in some cases as I have learned on this group) and in fact exhausted before having to pay for surgery. Many adults cycle through the conservative treatments and are driven to surgery because they don't work or stop working. As soon as Weiss quit Schroth and went to bracing, all insurance companies should have stopped paying for the treatment for kids. He essentially "proved" over a decade and tens of thousands of patients that it can't be used to avoid surgery. Maybe it and other therapies can be used to keep select adult patients like yourself off the table though by decreasing pain.

    I certainly agree that conservative treatments should be covered for adults. Not so much kids due to lack of evidence.
    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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    Quote Originally Posted by Pooka1 View Post
    I would say you are very lucky that any conservative treatment works for you. Here in the US, I believe all manner of conservative therapies are covered (except Schroth in some cases as I have learned on this group) and in fact exhausted before having to pay for surgery. Many adults cycle through the conservative treatments and are driven to surgery because they don't work or stop working. As soon as Weiss quit Schroth and went to bracing, all insurance companies should have stopped paying for the treatment for kids. He essentially "proved" over a decade and tens of thousands of patients that it can't be used to avoid surgery. Maybe it and other therapies can be used to keep select adult patients like yourself off the table though by decreasing pain.

    I certainly agree that conservative treatments should be covered for adults. Not so much kids due to lack of evidence.

    I use the term 'work' loosely. I work full-time and in order for me to maintain this and to get through the day I pay for physio twice a week. If I didn't I would have to give up work. I cannot sleep, eat, socialise in any capacity without shedloads of pain and this is with the physio. My physio is very painful but it seems to keep my back going. Nothing is covered under the NHS because there is no-evidence' that it works. No evidence that it can reduce a curve I accept but this SHOULD NOT mean that patients are denied access to any decent conservative care to help with pain. In a way I am 'lucky' in that as surgical levels at least I get to see a surgeon to discuss - he looks at my x-rays- tells me that if I were to be fused it would be s1-sacrum and says how I need to wait until I can't go on any more.... But what about the thousands who are 'below' surgical levels. they get no treatments and are forgotten"!

  3. #18
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    Quote Originally Posted by burdle View Post
    I use the term 'work' loosely. I work full-time and in order for me to maintain this and to get through the day I pay for physio twice a week. If I didn't I would have to give up work. I cannot sleep, eat, socialise in any capacity without shedloads of pain and this is with the physio. My physio is very painful but it seems to keep my back going. Nothing is covered under the NHS because there is no-evidence' that it works. No evidence that it can reduce a curve I accept but this SHOULD NOT mean that patients are denied access to any decent conservative care to help with pain. In a way I am 'lucky' in that as surgical levels at least I get to see a surgeon to discuss - he looks at my x-rays- tells me that if I were to be fused it would be s1-sacrum and says how I need to wait until I can't go on any more.... But what about the thousands who are 'below' surgical levels. they get no treatments and are forgotten"!
    Well, I don't have the statistics but if it can be shown that for surgical range patients, conservative treatments only delay versus avoid surgery for the vast majority of patients, AND we KNOW that older patients tend to do worse than younger ones, I think insurance companies have some ground to stand on w.r.t. not paying for conservative therapies. That's not what happens and they of course pay for even the surgical range patients because it is much cheaper than surgery I guess. But like with much of brace treatment, they are simply double paying... for the brace and for surgery. No insurance company should be paying for PT for kids in my opinion... the evidence is way too sparse.

    For people below surgical threshold, I am perplexed why they do not consider pain versus progression. If you had some other condition they would cover meds or PT for pain. It seems like they are ignoring the pain aspect. Systems like the UK and Canada have to ration medicine to keep down costs. In Canada, they have a ceiling on the number of doctors. So qualified doctors have to sit and wait for a slot to open. That's why we saw the two extreme pediatric cases come to the US for treatment. I imagine the few ped ortho surgeons were handling trauma ahead of all scoli cases. So it may be one of the ways they ration medicine to keep costs down. It's cruel but it may be the case.

    Will PT allow you be able to avoid surgery for life or will it just delay surgery for you since you are surgical? If you will need surgery eventually and will have a poorer prognosis because you waited several years, should the NHS care about double paying and possibly paying for complications due to older age at surgery? I have thought about this issue for a while when reading the testimonials. It's also why I think bracing only delaying surgery for kids is not in their best interest.
    Last edited by Pooka1; 01-09-2017 at 09:14 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."

  4. #19
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    In UK you simply cannot get any conservative treatment on the NHS. If you are below surgical levels you get dismissed. All you will get is painkillers.

    If you want physio you have to pay for it and the physios are not switched on the scoliosis at all because it does not figure in the public arena. They know very little about scoliosis. Private medicine in UK is not supposed to give you a better treatment just better access to it and in more comfortable surroundings etc.

    In my particular case my surgeon says that 1 in 5 surgical ops for cases such as mine ( I have 3 progressive curves) will fail. He frightens the sh*t out of me. He suggests trying to manage which I do.

    I worry about it progressing too far - but I am balanced - head on top of pelvis- it's just the crap in between!!. I also worry that the NHS will call a halt on ops such as this for over 60s ( for cost reasons) and by this time I will probably not have private insurance( get it because I work). I am caught between a rock and a hard place- and pain makes my brain so fuzzy that I cannot think straight... and am too exhausted.

    But as I said what do people not at surgical levels get for treatment?

  5. #20
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    Quote Originally Posted by burdle View Post
    If you want physio you have to pay for it and the physios are not switched on the scoliosis at all because it does not figure in the public arena. They know very little about scoliosis. Private medicine in UK is not supposed to give you a better treatment just better access to it and in more comfortable surroundings etc.
    I do not expect any physios to know much about scoliosis. Even Weiss, an MD who studied it for years with tens of thousands of patients didn't prove much of anything w.r.t. PT helping people avoid surgery. I do not think the knowledge exists ANYWHERE among PTs to help with scoliosis. It isn't a matter of them just not being trained in my opinion. Then it becomes a question of do we know enough about PT and scoliosis now to justify further research? I am not sure. I think Weiss's example may argue that we should not through more money at that because it is not likely to pan out.

    In my particular case my surgeon says that 1 in 5 surgical ops for cases such as mine ( I have 3 progressive curves) will fail. He frightens the sh*t out of me. He suggests trying to manage which I do.
    Will those odds get worse if you continue to wait? I think you are in a terrible bind in trying to guess whether you can manage the rest of your life with PT to if you should go for the best odds in surgery by doing it sooner rather than later. I think all adult surgical range patients are in a terrible bind. The only consensus for surgery that I am aware of is large progressive thoracic AIS curves in kids. Beyond those parameters (lumbar, adult, degenerative, etc.), there is no consensus as far as I know. Patients and doctors don't know.

    I worry about it progressing too far - but I am balanced - head on top of pelvis- it's just the crap in between!!. I also worry that the NHS will call a halt on ops such as this for over 60s ( for cost reasons) and by this time I will probably not have private insurance( get it because I work). I am caught between a rock and a hard place- and pain makes my brain so fuzzy that I cannot think straight... and am too exhausted.

    But as I said what do people not at surgical levels get for treatment?
    You are surgical so non-surgical cases are irrelevant at this point, yes?

    I think you are in a terrible bind. Life is very 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."

  6. #21
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    Quote Originally Posted by Pooka1 View Post
    I do not expect any physios to know much about scoliosis. Even Weiss, an MD who studied it for years with tens of thousands of patients didn't prove much of anything w.r.t. PT helping people avoid surgery. I do not think the knowledge exists ANYWHERE among PTs to help with scoliosis. It isn't a matter of them just not being trained in my opinion. Then it becomes a question of do we know enough about PT and scoliosis now to justify further research? I am not sure. I think Weiss's example may argue that we should not through more money at that because it is not likely to pan out.

    .
    Physios need to be informed about scoliosis not to straighten a curve (avoid surgery) but to provide the support for people in pain. They should understand the complexities of an asymmetric spine and provide suitable exercise at the very least.
    Part of the problem is that as we get older we are in fear of pain- yet movement is good for you. support from a musculo skeletal expert (physio) is invaluable in supporting a patient with scoliosis to help themselves. This is 'treatment'- we are not going to get better but physios should be able to help us maintain ourselves to the best of our ability

    My curves are 49,59 and 49 ( top to bottom) so yes surgical levels and I am monitored, but in the meantime I need to be able to get on with my life and In as little pain as possible.

  7. #22
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    Now that you know what PT to do that helps you, can't you do it at home? When I had PT for my shoulders, they gave me at home work. I went just long enough for them to assess me, teach me the exercises, and see that they were working. Then I was booted. It was a few weeks.

    How long do you need PT outside of your home? How much does it bring down your pain? Is it still working as well as when you started?
    Last edited by Pooka1; 01-09-2017 at 10:40 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."

  8. #23
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    It was the same when I had a herniated disc. A few weeks and they booted me out.
    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."

  9. #24
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    Quote Originally Posted by Pooka1 View Post
    Now that you know what PT to do that helps you, can't you do it at home? When I had PT for my shoulders, they gave me at home work. I went just long enough for them to assess me, teach me the exercises, and see that they were working. Then I was booted. It was a few weeks.

    How long do you need PT outside of your home? How much does it bring down your pain? Is it still working as well as when you started?

    Not really- my physio pushes down from above on my curves when I am in a stretched position- on exercise ball. He massages first (very painful) and then a couple of days later helps me with manipulative therapy. I cannot do this myself with the strength needed. I also see him when bits of me go into spasm. Its like balancing spinning plates- there is so much wrong with my spine. When I get upset he reassures me ( it took a long time for him to accept that scoliosis does not fit into the normal patient model of self-sufficiency) and he keeps me informed about pain management techniques etc. It keeps me off Tramadol and Pregabalin which make me ill for a lot of the time. When I discuss anything we my doctor he supports the physio but cannot authorise on NHS ( just drugs)

  10. #25
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    How long have you been going? Is it getting better, staying the same, or getting worse?

    Given the number of people who "fail" PT and are driven to surgery, I wonder if that is why the NHS claims there is no evidence for efficacy and doesn't cover it for surgical range patients. Non-surgical range patients are a different story.... all they have is conservative treatments so those should be covered.
    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. #26
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    Quote Originally Posted by Pooka1 View Post
    How long have you been going? Is it getting better, staying the same, or getting worse?

    Given the number of people who "fail" PT and are driven to surgery, I wonder if that is why the NHS claims there is no evidence for efficacy and doesn't cover it for surgical range patients. Non-surgical range patients are a different story.... all they have is conservative treatments so those should be covered.
    No-one in UK ( surgical or non-surgical) will get Physio on NHS. They don't make the distinction- we still have GPs ( and consultants for that matter) who don't even know there is a surgery option!


    I have been going for 8 years- started when the pain got too much for me to manage and I got acute spells that stopped me moving at all.. It helps me to know that there is someone there who can target a specific place and just give me the help I need there and then. The curves still progress - no way of knowing if they progress more slowly due to inaccuracies of measurement.

    Failing PT because the curves don't reduce? It is the PT target that is wrong Physios shouldn't be aiming to reduce - just improve pain and function.

  12. #27
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    Quote Originally Posted by burdle View Post
    Failing PT because the curves don't reduce? It is the PT target that is wrong Physios shouldn't be aiming to reduce - just improve pain and function.
    No not a failure because curves don't reduce. A failure because it doesn't adequately control the pain. Then they are driven to surgery.

    Can you use PT to avoid a level of pain that will drive you to surgery the rest of your life in your opinion?
    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."

  13. #28
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    In UK surgery is hardly anything to do with pain control when it comes to scoliosis. Surgeons will tell me that I will be swapping one pain for another!

    As I understand it there are no studies for conservative therapy that show it doesn't help with pain. The studies all focus on whether it has any effect on the curve. I would maintain that PT does help pain! As I said the target is wrong. They throw the baby out with the bathwater when PT research is dismissed. They do it because of cost but this is the thrux of my argument. Any one who suffers pain from scoliosis should get treatment for pain!

    In the long-term pain will 'get me'!

  14. #29
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    My sense from the adult testimonials is that most surgeries are ultimately done for pain that is no longer able to be controlled by conservative treatments. That pain may be caused by progression in the case of AIS or from tissues becoming incompetent in the case of degenerative. There are relatively few adult fusions I have read about here that were done for progression alone. I can only think of two people.

    Therefore I think most adult fusions occur because the patients are seeking pain relief. Linda has some interesting observations on the amount and pattern of pain relief with adult deformity surgery. As I recall, people with more pain pre-op tended to experience the most pain reduction whereas people with little pain pre-op were less satisfied because they had more pain post-op. Of course there are no guarantees.

    You are right near the surgical threshold. If you had no pain, it seems like you would not care about your curves based on your comments about being balanced. You are like most of the adult patients who were eventually driven to fusion as far as I can tell except that I think most adult testimonials here are for non-degenerative scoliosis (AIS, syndromic, etc.).
    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. #30
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    Quote Originally Posted by Pooka1 View Post
    My sense from the adult testimonials is that most surgeries are ultimately done for pain that is no longer able to be controlled by conservative treatments. That pain may be caused by progression in the case of AIS or from tissues becoming incompetent in the case of degenerative. There are relatively few adult fusions I have read about here that were done for progression alone. I can only think of two people.

    Therefore I think most adult fusions occur because the patients are seeking pain relief. Linda has some interesting observations on the amount and pattern of pain relief with adult deformity surgery. As I recall, people with more pain pre-op tended to experience the most pain reduction whereas people with little pain pre-op were less satisfied because they had more pain post-op. Of course there are no guarantees.

    You are right near the surgical threshold. If you had no pain, it seems like you would not care about your curves based on your comments about being balanced. You are like most of the adult patients who were eventually driven to fusion as far as I can tell except that I think most adult testimonials here are for non-degenerative scoliosis (AIS, syndromic, etc.).
    Hi,

    I have been at surgery levels since I was in my 30s. My thoracic curve was 53 degrees then. I refused surgery as no-one was giving me any info regarding outcomes and to be honest I was scared. I have always had pain since my teenage years. Now they tell me the surgery required is very dangerous.


    The other two curves are both structural. progression has been slow, but I am told it is Adult AIS and not adult degenerative progression.

    My surgeon says they only operate on adults with Adult AIS for reasons other than pain. They say I will likely be in a lot of pain since the fusion would be so long. I do care about my curves - I am told I am balanced but my movement does not show it. I am very inflexible and cannot walk or do anything without shedloads of pain.The balanced bit is the surgeons comment- to defend not doing the long surgery

    Just Technically when I have an x-ray- head is on top of pelvis ( sort of)

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