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LindaRacine
12-30-2016, 01:42 AM
Hi...

I wanted to put in a plug for the National Scoliosis Foundation, the organization behind our forum. The NSF is a 501(c)(3) charitable organization that survives on individual donations. If you're looking for a place to make a year end donation, please consider them. (Disclaimer: I take no funding from the NSF.)

http://www.scoliosis.org/donate/

Thanks and Happy New Year.

--Linda

burdle
01-03-2017, 06:37 AM
Can you clarify what the dontations goes toward - do you affiliate with any of the other scoliosis organisations e.g SOSRT or SRS?

Pooka1
01-03-2017, 07:21 AM
I disagree with some of his positions but my direct albeit small experience of Joe O'Brien is that he is a stand up guy who is fair as against his own interests.

I am more skeptical of treatment claims that Joe seems to be.

LindaRacine
01-03-2017, 10:38 PM
Can you clarify what the dontations goes toward - do you affiliate with any of the other scoliosis organisations e.g SOSRT or SRS?

Running the NSF is a full time job. I do not see their budgets or tax filings, so I can't know what their income stream is. I suspect it's relatively small. Joe O'Brien, who runs the NSF, is an honorary member of the SRS. He is also on the advisory board for SOSORT.

burdle
01-04-2017, 05:35 AM
Hi,

do you now what the NFS does- how does it justify its existence. I am not asking as a criticism - I just wanted to understand its role.

In UK we have a similar forum ( well we did but it has been down for a bit) but it exists purely as a support forum and is voluntarily run.

What else does NSF do and how does it keep up with advances made by other bodies such as SRS and SOSORT?

Pooka1
01-04-2017, 08:54 AM
What else does NSF do and how does it keep up with advances made by other bodies such as SRS and SOSORT?

I am guessing due to his involvement with SRS and SOSORT, Mr. O'Brien is aware of what those two bodies are doing. But he doesn't participate on the forum much.

Mr. O'Brien has published at least one paper as a co-author in the field of scoliosis but I am not sure if he has research training or what his role was on the paper.

I believe he is or has been a supporter of the Spinecor brace despite the fact that pediatric orthopedic surgeons didn't see much evidence of efficacy and therefore largely don't offer it leaving chiros to step into the vacuum.

burdle
01-04-2017, 10:24 AM
I think it is of the upmost importance that bodies such as this one are up-to-date.

The forum itself is invaluable for patient support etc. but we are all 'amateurs' and we need to be aware of the 'professional' opinions and latest initiatives in order to make what could be life-changing decisions.

I cannot comment on donations until I understand fully what they are for and to what use they are put, but I am very keen to ensure that much needed charitable donation is properly targeted and efforts are not needlessly duplicated.

Pooka1
01-04-2017, 09:59 PM
The home page tells what their mission is.

Early screening seems to be a main focus. Before VBS and VBT, I was not a fan of the early detection programs. But now that these treatments are available, I think early screening is very important.

titaniumed
01-06-2017, 12:32 AM
School screening is important because growing up and not knowing is a delicate matter.... I visited doctors while growing up in the 60ís and early 70ís for various reasons only to be surprised with the sudden diagnosis (without x-rays) at age 16 after a car accident. I wondered why I was visiting medical doctors? Maybe scoliosis wasnít a priority for GPís at that time because they didnít have the answers? I donít know how I slipped through the cracks. They didnít screen for scoliosis in schools back then.

School screening is a chance that ďsomeoneĒ(with some training) looks at our backs and says something. I did notice my lumbar hump in the mirror but didnít say anything. I donít know why I didnít say anything? I was a kid, and kids will be kids. Scoliosis from that point on created a lot of questions.....and worry.

Donating to NSF helps since it is a group of people trying to work on scoliosis solutions.....and the forum is a good support tool. A soon as its lost, then we revert back to to dark ages....like it was many years ago before internet and support forums. Those were scary times as many of the elder posters know. It would be nice if some of the SSO members would register here on NSF. Its like in Star Wars when they arrive to find out a planet or system has vanished and created a black hole.....

Some scoliosis solutions will work, and some wont, but we still appreciate the effort and persistence....

Ed

burdle
01-06-2017, 05:09 AM
I absolutely agree about the forum which is invaluable for support. It was the work of the NSF itself that I was asking about. There are a number of bodies in existence for Scoliosis - HARMS, SRS, SOSORT and if I am honest WHAT are they all doing??. Nothing seems to have changed - they all say that more research is needed into the cause of scoliosis and moreover into conservative evidence based treatment. SOSORT concluded in 2012 that there was no evidence to suggest that manual therapy doe not help just that there was no evidence that it does. Well it is now 2017 and I cannot see any new research into conservative therapy. I know I am muddling the two research areas but they all recognise the increase in adult scoliosis in an aging population but there is no targeted conservative therapy available still ( other than wacky chiros). Speaking as an aging adult - I am asking what is actually changing- what help are we getting?

I guess I was interested to know how NSF fits in and how it keeps abreast of any new research and how it filters it down to its members?

By the way I have just had an article published in the Journal for Private Physiotherapists in UK - 'a patients perspective'

Pooka1
01-06-2017, 06:59 AM
I absolutely agree about the forum which is invaluable for support. It was the work of the NSF itself that I was asking about. There are a number of bodies in existence for Scoliosis - HARMS, SRS, SOSORT and if I am honest WHAT are they all doing??. Nothing seems to have changed - they all say that more research is needed into the cause of scoliosis and moreover into conservative evidence based treatment.

Apparently there are only three major research groups in the world studying scoliosis. That is going to limit progress. Even though a few percent of the world's population has scoliosis, only a small fraction become surgical so maybe it is considered an orphan disease.


SOSORT concluded in 2012 that there was no evidence to suggest that manual therapy doe not help just that there was no evidence that it does. Well it is now 2017 and I cannot see any new research into conservative therapy. I know I am muddling the two research areas but they all recognise the increase in adult scoliosis in an aging population but there is no targeted conservative therapy available still ( other than wacky chiros). Speaking as an aging adult - I am asking what is actually changing- what help are we getting?

On the issue of lack of evidence against manual therapy, that's pretty weak given the number of years it has been investigated. At some point, the absence of evidence is evidence of absence. We do know the broad parameters of PT effectiveness. We have isolated cases of success (a yoga woman, a breathing woman [Hawes], an Italian therapy woman, etc.) who have avoided surgery to date (not necessarily avoiding being surgical). The vast majority apparently do not respond for whatever reason. We know that. The outline of a motif is there.

If we include non-fusion surgery under "conservative" then there has been some progress... VBS and VBT. VBT is apparently slowly expanding to the adult population. That is the best hope I see for adult patients to hope to avoid fusion as far as I know which isn't far.


I guess I was interested to know how NSF fits in and how it keeps abreast of any new research and how it filters it down to its members?

By the way I have just had an article published in the Journal for Private Physiotherapists in UK - 'a patients perspective'

Congratulations! I would love to read it.

Pooka1
01-07-2017, 09:14 PM
School screening is important because growing up and not knowing is a delicate matter.... I visited doctors while growing up in the 60ís and early 70ís for various reasons only to be surprised with the sudden diagnosis (without x-rays) at age 16 after a car accident. I wondered why I was visiting medical doctors? Maybe scoliosis wasnít a priority for GPís at that time because they didnít have the answers? I donít know how I slipped through the cracks. They didnít screen for scoliosis in schools back then.

School screening is a chance that ďsomeoneĒ(with some training) looks at our backs and says something. I did notice my lumbar hump in the mirror but didnít say anything. I donít know why I didnít say anything? I was a kid, and kids will be kids. Scoliosis from that point on created a lot of questions.....and worry.

I understand your reasoning here. I was just concerned about the issue of diagnosing a medical problem and not having any proven treatment until the surgery threshold is reached. We know there is a lot of unnecessary and ineffective treatment. Screening adds to that problem.

It's a new ball game now with VBS and VBT. There are surgical windows for those things so screening is now vital in my opinion.

titaniumed
01-07-2017, 11:13 PM
Sharon, I agree....itís a tough situation making scoliosis decisions with kids. In general, I would probably do nothing. (Unless its extreme)

Stapling and tethering is still surgery....promising yes, but still surgery. For kids, you have to think 10 times harder.

I have had women ask me if they should get new boobs. I donít know why this happens to lucky me, maybe they want some sort of ďtechnical boobĒ related answer to jack up the male brain. (smiley face)

The answer is NO. (stern face)

For Burdle, yes they do studies....lots of them, but they still need to so much more.....For adult conservative methods that involve degeneration, seems unlikely, for a cure, we can only wait. I donít think it will happen in our lifetimes.

Awareness is a good thing....NSF does this.

Ed

Pooka1
01-08-2017, 12:00 PM
Yes VBS and VBT is still surgery. But it is non-fusion surgery. The dream of non-surgical treatment that reliably avoids surgery may never be realized. Until they can identify and address the etiology, that may be as good as it gets for a while.

burdle
01-09-2017, 05:13 AM
Sharon, I agree....it’s a tough situation making scoliosis decisions with kids. In general, I would probably do nothing. (Unless its extreme)


For Burdle, yes they do studies....lots of them, but they still need to so much more.....For adult conservative methods that involve degeneration, seems unlikely, for a cure, we can only wait. I don’t think it will happen in our lifetimes.

Awareness is a good thing....NSF does this.

Ed

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?

Pooka1
01-09-2017, 08:14 AM
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.

burdle
01-09-2017, 08:36 AM
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"!

Pooka1
01-09-2017, 08:57 AM
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.

burdle
01-09-2017, 09:19 AM
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?

Pooka1
01-09-2017, 09:38 AM
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.

burdle
01-09-2017, 10:27 AM
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.

Pooka1
01-09-2017, 10:33 AM
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?

Pooka1
01-09-2017, 10:44 AM
It was the same when I had a herniated disc. A few weeks and they booted me out.

burdle
01-09-2017, 10:51 AM
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)

Pooka1
01-09-2017, 11:00 AM
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.

burdle
01-09-2017, 11:14 AM
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.

Pooka1
01-09-2017, 12:12 PM
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?

burdle
01-10-2017, 04:38 AM
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'!

Pooka1
01-10-2017, 08:34 AM
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.).

burdle
01-10-2017, 09:47 AM
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)

Pooka1
01-10-2017, 10:02 AM
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?

Pooka1
01-10-2017, 10:08 AM
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.

burdle
01-11-2017, 06:00 AM
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!!!

Pooka1
01-11-2017, 08:22 AM
Does the NHS cover PT for a herniated disc? Do you have any herniated discs? Maybe you can go that angle.

burdle
01-11-2017, 12:47 PM
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.

LindaRacine
01-11-2017, 10:25 PM
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.

Pooka1
01-11-2017, 10:35 PM
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.

burdle
01-12-2017, 04:53 AM
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

Pooka1
01-12-2017, 08:00 AM
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.

titaniumed
01-12-2017, 08:50 AM
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 donít 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

burdle
01-12-2017, 11:55 AM
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...

titaniumed
01-14-2017, 12:17 PM
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 donít, 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

Pooka1
01-14-2017, 02:26 PM
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 donít, 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.

titaniumed
01-15-2017, 12:48 AM
Thanks Sharon. I wasnít 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 ďhealingĒ tool and not a ďmaintenanceĒ 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 doesnít 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 wasnít 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 ďZenĒ 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

jackieg412
01-15-2017, 08:54 AM
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.

titaniumed
01-15-2017, 12:23 PM
Jackie, yes, on my neck, by myself. (By thrusting my head sideways as if laying down on shoulder)

I cant comment on your shoulder issues....You have had extensive revision thoracic and shoulder work done which is so rare....Youíre the only one....

I stopped Chiro since I donít have much left to adjust. (smiley face) I have joked about this at the office, stressing my ďONEĒ level left, (My head) and they donít laugh much. LOL The math has to be off for the comedy to work. If there are 24 levels to adjust and I only have one left, I should get a severe discount? Like 1/24th the price right? Many times I would go down to my Chiropractor walking in sideways like a crab, beat from a ski crash or whatever and they would always ask, ďWhat happened?Ē The looks on their faces was hilarious....We tried all sorts of things through the years, and they kept me walking. They also knew I would need surgery and gave no guarantees. I would judge their efforts of pain relief. It was better than doing meds for decades.

Traction has worked, and not worked.

However, one device that I used years ago at my Chiropractor that helped quite a bit was the Pneumex traction treadmill. You wear a vest that wraps around your rib cage and pull up vertically while exercising on a treadmill. We would set the vertical pull at 60# and I would do 30 minute sessions. After 30 minutes on this machine, it was difficult to get any adjustments from a manual adjustment by a Chiro on a table because the machine did the adjustments while walking. Pulling apart or de-weighting while exercising with scoliosis is a good thing. This was one of the best pieces of equipment I have ever used for scoliosis therapy. It really helped with pain. I was doing it 3 days a week for a few years, I should have been on that machine every day.

http://www.pneumex.com/Pneu-Lift.html

One can get a handyman to rig up this setup cheaply with a system of pulleyís and weights. This company uses air, which is nice, but I donít think its necessary.

Scoliosis is complicated......Its going to take a lot of effort in all areas to solve the puzzleís and its going to take a really long time.....(smug face)

This is why its important to donate to NSF....

Ed

jackieg412
01-15-2017, 03:24 PM
Yes the strange shoulder issue. But I can feel the lock happening and figured out something needs to adjust and then how to do it but the snap hurts and then feels better. It is maybe a few times a week and is in the fused thoracic area.
Yes it is important to donate to the NSF. We may be saving many others from the trials of scoliosis.
Research and education are the key.

burdle
01-16-2017, 05:44 AM
Thanks Sharon. I wasnít thinking poetry.....I was thinking more in general, and it applies to all scoliosis patients....

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 ďZenĒ 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

I cannot get out of the bath by myself without huge difficulty? I cannot 'get my leg over' any more:). And when I have finished I have to let the water out so that if I slip I do not drown- so I get freezing cold. Baths are no longer a luxury for me- just fraught with danger!

burdle
01-16-2017, 05:47 AM
Yes it is important to donate to the NSF. We may be saving many others from the trials of scoliosis.
Research and education are the key.

I still don't know what they actually do? This is not meant to be accusatorial - but what has been achieved in the last 5 years for example? How has treatment/awareness changed. I could point to changes for children ( surgical changes) but what influence did NSF have on those changes AND what has changed for adults?

jackieg412
01-16-2017, 08:15 AM
I may be seen soon at one of the large medical centers in the Chicago area. I should find out today. They say they do research in orthopedics and I will try to ask about the changes in the last few years. They may answer.

burdle
01-16-2017, 10:03 AM
I may be seen soon at one of the large medical centers in the Chicago area. I should find out today. They say they do research in orthopedics and I will try to ask about the changes in the last few years. They may answer.


It's more about what influence NSF has had in any changes - the thread is about the role that they play and what the money they raise goes towards ( excluding salaries) . I just never hear them mentioned. I hear about SOSORT and HARMS and BRSF and the ZORAB symposium but I don't see reference to NSF- I could be missing something?

titaniumed
01-16-2017, 10:42 PM
I cannot get out of the bath by myself without huge difficulty? I cannot 'get my leg over' any more:). And when I have finished I have to let the water out so that if I slip I do not drown- so I get freezing cold. Baths are no longer a luxury for me- just fraught with danger!

You might check into a lift.....They do work quite well....My dad loved his baths and he had ALS. Find someplace with hot tubs or hot pool, and have someone help you in.

Fraught with danger? No way.....Thatís only a perception. (smiley face)

Much of my inspiration comes from my father, and FDR, who battled his fears, and the rest is history.... Itís a true story about ďfear and conquering diseaseĒ and the founding of the March of Dimes. Skip the WW2 part, thatís just the extra bonus part of the story....(every historian would hang me for saying this)

I stumbled across this wiki article I didnít know existed. It also has rare FDR photos...
https://en.wikipedia.org/wiki/Franklin_D._Roosevelt's_paralytic_illness

Here is a good movie about Warm Springs. His spiritual growth was moving.......He was a giant from the past.
http://www.imdb.com/title/tt0423510/

Ed

LindaRacine
01-17-2017, 01:37 AM
It's more about what influence NSF has had in any changes - the thread is about the role that they play and what the money they raise goes towards ( excluding salaries) . I just never hear them mentioned. I hear about SOSORT and HARMS and BRSF and the ZORAB symposium but I don't see reference to NSF- I could be missing something?

That's probably because their mission does not include research, although they do participate with SOSORT and SRS, and they do donate excess funds to the SRS and possibly other organizations. Most of the organizations you mention are meant for medical professionals. The NSF serves the patient community. Their mission includes school screening, patient and family support, and raising awareness. If those issues aren't important to you, then you shouldn't feel the need to make a donation.

burdle
01-17-2017, 05:45 AM
That's probably because their mission does not include research, although they do participate with SOSORT and SRS, and they do donate excess funds to the SRS and possibly other organizations. Most of the organizations you mention are meant for medical professionals. The NSF serves the patient community. Their mission includes school screening, patient and family support, and raising awareness. If those issues aren't important to you, then you shouldn't feel the need to make a donation.

Awareness is important to me- the thing is what has changed- even over the last 5 years?. In the UK nothing has changed- we have no screening- we have GPs who do not know that something can be done about scoliosis and we have orthopaedic surgeons who will not refer to scoliosis specialists. Maybe it is different in US but most of what you have mentioned is for kids- what doe NSF do for adults. The forum is made of up adults In an ideal world there would be no adults with scoliosis but this is the here and now!

Pooka1
01-17-2017, 08:34 AM
Awareness is important to me- the thing is what has changed- even over the last 5 years?. In the UK nothing has changed- we have no screening- we have GPs who do not know that something can be done about scoliosis and we have orthopaedic surgeons who will not refer to scoliosis specialists. Maybe it is different in US but most of what you have mentioned is for kids- what doe NSF do for adults. The forum is made of up adults In an ideal world there would be no adults with scoliosis but this is the here and now!

The forum is virtually all adults now. There used to be more parents but that has stopped. Parents are in a very dicey situation and are largely untrained in science. This has lead to many, many less than productive, less than rational exchanges which help nobody. I am glad that is over and would steer any parent who comes here to the Facebook page. The future now for kids is VBS and VBT in my opinion and there is a large and successful Facebook page for that. Talk about VBS was not encouraged here in the past so parents created another forum. I assume that place is hopping and that parents can find it.

This forum has always be more productive for adults in my opinion although it occasionally jumps the tracks in the non-surgical section.

LindaRacine
01-17-2017, 10:16 PM
Awareness is important to me- the thing is what has changed- even over the last 5 years?. In the UK nothing has changed- we have no screening- we have GPs who do not know that something can be done about scoliosis and we have orthopaedic surgeons who will not refer to scoliosis specialists. Maybe it is different in US but most of what you have mentioned is for kids- what doe NSF do for adults. The forum is made of up adults In an ideal world there would be no adults with scoliosis but this is the here and now!
The NSF sponsors this forum. That may be meaningless to you, but it's been very valuable for some.

burdle
01-18-2017, 04:55 AM
The NSF sponsors this forum. That may be meaningless to you, but it's been very valuable for some.

You know I have been very polite about my question- I said I was not being accusatorial ; I said the I valued the forum so your comment about 'meaningless' is inappropriate. I am just asking where the money goes and asking how it has made a difference. Every charity has to be able to do explain this. Why are you being defensive- your role should not be defensive!

titaniumed
01-18-2017, 10:02 PM
I never looked, but I found past financials online.....Anyone can do this.

I think that if we want this forum and NSF to continue, it would be prudent that whoever reads here and values the foundation, the discussions, and testimonials, PLEASE make some sort of donation to ensure survival.

From a financial standpoint, the numbers are not good, and need help.

I am not affiliated with NSF other than being a member who posts here.

Ed

LindaRacine
01-19-2017, 12:45 AM
You know I have been very polite about my question- I said I was not being accusatorial ; I said the I valued the forum so your comment about 'meaningless' is inappropriate. I am just asking where the money goes and asking how it has made a difference. Every charity has to be able to do explain this. Why are you being defensive- your role should not be defensive!

Sorry, but you keep trying to hammer away at essentially the same thing, and I can't come up with any answer that works for you. The NSF is not a research organization. They're really in the business of information and support. The "changes" they make are not necessarily tangible, but a lot of people have been greatly helped by participation in this forum. It may be that you're trying not to be accusatorial, but it's sort of coming across that way to me. It feels as if you don't believe they're doing anything for the small amount of funding they receive.

As Ed has pointed out, you can find financial statements online, but as far as I know, none of us have any more information that you do. If you're serious about wanting to donate funds, and need more specific information, please contact Joe O'Brien at jpobrien@scoliosis.org. I don't have a lot of disposable income, but I personally send them a check occasionally. Even if they didn't do anything else, I think the forum is of great value for many, and I want to do what I can to ensure that their effort is sustainable.

Sorry about my tone. I may have been a little frustrated.

--Linda

burdle
01-19-2017, 07:17 AM
Sorry, but you keep trying to hammer away at essentially the same thing, and I can't come up with any answer that works for you. The NSF is not a research organization. They're really in the business of information and support. The "changes" they make are not necessarily tangible, but a lot of people have been greatly helped by participation in this forum. It may be that you're trying not to be accusatorial, but it's sort of coming across that way to me. It feels as if you don't believe they're doing anything for the small amount of funding they receive.

As Ed has pointed out, you can find financial statements online, but as far as I know, none of us have any more information that you do. If you're serious about wanting to donate funds, and need more specific information, please contact Joe O'Brien at jpobrien@scoliosis.org. I don't have a lot of disposable income, but I personally send them a check occasionally. Even if they didn't do anything else, I think the forum is of great value for many, and I want to do what I can to ensure that their effort is sustainable.

Sorry about my tone. I may have been a little frustrated.

--Linda

You know I haven't been 'hammering away'. the thread was hijacked a bit ( by myself) and took a different track for a bit. I asked the questions originally and I got a real answer from you regarding the fact that NSF was not for research - which was informative as I did not know this. I just asked again whether there was anything 'published' or put out that showed NSF successes in the areas that they do get involved. I have no problem with the donations - that is irrelevant now- there was no need for you to get frustrated or moreover for you to show it. I would indeed like to contact Jo O'Brian and may well do so - especially as I can see nothing about VBT or VBS mentioned.

Pooka1
01-19-2017, 08:20 AM
I would indeed like to contact Jo O'Brian and may well do so - especially as I can see nothing about VBT or VBS mentioned.

Although it used to be hopping, the adolescent section on this group is essentially dead. There are thousands of post about the state of bracing, PT, and some on fusionless surgery. I imagine new parents come here and read some of the voluminous back and forths and have their questions answered. They are always the same ones and with one goal.... avoiding surgery.

Many years ago, a child here had VBS. The VBS posts were somehow not encouraged... I don't have the full story. I do know at the time Joe was supporting the Spinecor brace which didn't pan out. So that parent and few others took the VBS and now VBT discussions to Facebook. I am glad of it for at least the reason that parents won't be subject to the lay misinformation that was routinely posted in the research section by some parents without research training.

burdle
01-19-2017, 08:46 AM
Although it used to be hopping, the adolescent section on this group is essentially dead. There are thousands of post about the state of bracing, PT, and some on fusionless surgery. I imagine new parents come here and read some of the voluminous back and forths and have their questions answered. They are always the same ones and with one goal.... avoiding surgery.

Many years ago, a child here had VBS. The VBS posts were somehow not encouraged... I don't have the full story. I do know at the time Joe was supporting the Spinecor brace which didn't pan out. So that parent and few others took the VBS and now VBT discussions to Facebook. I am glad of it for at least the reason that parents won't be subject to the lay misinformation that was routinely posted in the research section by some parents without research training.

Would you not expect to see some reference to VBT on the NFS website?

Pooka1
01-19-2017, 09:02 AM
Would you not expect to see some reference to VBT on the NFS website?

There are a few posts. It just depends on what people post. I direct people to the FB page if they want info on VBS and VBT.

burdle
01-19-2017, 10:22 AM
There are a few posts. It just depends on what people post. I direct people to the FB page if they want info on VBS and VBT.

Hi,

I meant on the NSF website itself - to alert patients to all the options

Pooka1
01-19-2017, 12:43 PM
Hi,

I meant on the NSF website itself - to alert patients to all the options

I am saying that VBS posts were not encouraged or highlighted or promoted or whatever in the past for whatever reason. That explains why they are not here now.

LindaRacine
01-19-2017, 11:04 PM
I would indeed like to contact Jo O'Brian and may well do so - especially as I can see nothing about VBT or VBS mentioned.
Joe is not a medical professional, so I wouldn't expect much in the way of professional writing on treatments.

Pooka1
01-19-2017, 11:42 PM
Joe is not a medical professional, so I wouldn't expect much in the way of professional writing on treatments.

He backed the wrong horse (Spinecor). I am not sure why he was not supportive of VBS in addition to Spinecor.

LindaRacine
01-20-2017, 01:02 AM
He backed the wrong horse (Spinecor). I am not sure why he was not supportive of VBS in addition to Spinecor.

I don't think we know if he "supports" VBS or not. And, as I said, he's not a medical professional so his opinion is worth about the same as you and me. As someone who has had multiple surgeries, I suspect he probably has at least some passing interest in any procedure that reduces the need for fusion.

burdle
01-20-2017, 04:54 AM
I don't think we know if he "supports" VBS or not. And, as I said, he's not a medical professional so his opinion is worth about the same as you and me. As someone who has had multiple surgeries, I suspect he probably has at least some passing interest in any procedure that reduces the need for fusion.

Yes but NSF is about awareness- so surely some mention of a new surgical technique should be made somewhere on the website?

Pooka1
01-20-2017, 09:53 AM
Yes but NSF is about awareness- so surely some mention of a new surgical technique should be made somewhere on the website?

This forum is driven by whoever chooses to post. Joe does not take any control over content with few exceptions.

There was an extreme situation where two other members were taking issue with my scientific posts and Joe reached out to each of us on the phone. Though I disagree with coddling anti-science positions and I am not sure why he needed to call me also, he reached out to all three of us asking to talk by phone.

This forum is poster led which is a double-edged sword as we have seen. Having a "Research" section in a largely lay forum is like yelling "FIRE!" in a crowded theater in my opinion.

Pooka1
01-20-2017, 10:00 AM
Burdle you can post about VBS and VBT if you like. There is no prohibition against it.

As I have said, if someone asked about it, I direct them to the Facebook site where many experienced people post. They used to post here. They post there and not here for a reason.

LindaRacine
01-20-2017, 11:06 PM
Burdle you can post about VBS and VBT if you like. There is no prohibition against it.

As I have said, if someone asked about it, I direct them to the Facebook site where many experienced people post. They used to post here. They post there and not here for a reason.

Sharon... Burdle is talking about the non-forum part of the NSF website.

Burdle... if Joe had a medical professional who wrote content for the NSF website, then a section on treatments would be appropriate. I think most people would find little value to a lay person writing about various treatments. There are plenty of websites that do that. You might try SpineUniverse or Spine-health.com.

--Linda

burdle
01-21-2017, 02:08 PM
Sharon... Burdle is talking about the non-forum part of the NSF website.

Burdle... if Joe had a medical professional who wrote content for the NSF website, then a section on treatments would be appropriate. I think most people would find little value to a lay person writing about various treatments. There are plenty of websites that do that. You might try SpineUniverse or Spine-health.com.

--Linda

I am a bit confused- the website is about awareness and support? So surely if a parent or patient finds the site they are looking for info? I need to make myself familiar with the site.

Pooka1
01-21-2017, 02:22 PM
I am a bit confused- the website is about awareness and support? So surely if a parent or patient finds the site they are looking for info? I need to make myself familiar with the site.

I spend 99.99999% percent of my contact time with this site on the forum. Before this thread, I think I had only viewed the non-forum content a few times and pointed to an article by the SRS there talking about the bracing literature being a train wreck which is obvious to anyone reading it.

If I want science (etiology, treatments, etc.), I would go to the top journals and the SRS. Unlike certain frequent flyers in the forum, the site management does not purport to be researchers. It is the premier forum on scoliosis in my opinion which is valuable enough.

Pooka1
01-21-2017, 02:29 PM
Here is the SRS site.

http://www.srs.org/

W.R.T. NSF, I would consider anything beyond the forum to be duplicative of that site. Joe has apparently picked a thing to champion which appears to be early screening. He may have done so because there was no consensus among surgeons that early screening is useful absent some effective conservative treatment. I am just spitting in the wind here in re Joe's purpose.

LindaRacine
01-21-2017, 10:31 PM
Here is the SRS site.

http://www.srs.org/

W.R.T. NSF, I would consider anything beyond the forum to be duplicative of that site. Joe has apparently picked a thing to champion which appears to be early screening. He may have done so because there was no consensus among surgeons that early screening is useful absent some effective conservative treatment. I am just spitting in the wind here in re Joe's purpose.
I don't think it was Joe who set the original focus. It was Bunny Gowen, the founder of the NSF, who saw what occurred when scoliosis wasn't diagnosed and kids went on to get 100+ degree curves. Again, as a non-medical professional, Bunny saw that school screening was the one thing she had the ability to affect.

Pooka1
01-21-2017, 10:49 PM
Okay thanks for that info, Linda.

Large curves in the US are unusual despite the lack of uniform school screening as far as I know.

The danger of early screening is large rates of unnecessary and ineffective treatment. I think that is why there were many surgeons who argued against early screening.

burdle
01-23-2017, 09:58 AM
I have had a good look now and it does strike me that as SPINECOR is highlighted as a non-surgical treatment that there should be at least some mention of latest surgical options. Spinecor is no longer recommended as a treatment instead of a conventional brace by medical professionals anyway as far as I can tell?

There is a lot of things about awareness etc. and screening an patient stories but as it is called the NATIONAL Scoliosis Foundation- it should mention VBT as options for one to discuss with a surgeon. It should not represent any partisan view?

There are interviews about surgery after all on the site and these are as recent as 2015 so surely in order to make sure scoliosis sufferers are aware there should be some mention of VBT.

Pooka1
01-23-2017, 07:10 PM
Spinecor is no longer recommended as a treatment instead of a conventional brace by medical professionals anyway as far as I can tell?

That's true as far as I know. You pretty much have to be driven to a chiro to get it as, in the words of a top pediatric orthopedic surgeon, they (the surgeons) "just couldn't make it work". Our surgeon told me that the journal articles that the Spinecor inventors published were not believed by a lot of surgeons. And in fact they were right not to believe them as it turns out.

flerc
01-23-2017, 09:17 PM
Absolutely false. Not only chiropractors works with Spinecor and of course surgeons can make it works since is the invention of surgeons (although there was another very much similar centuries ago). If some of them don't believe in those journal articles is simply because they don't want to believe in nothing else than fusion.. coincidently what they are doing since decades ago.. what a coincidence!.

flerc
01-23-2017, 09:39 PM
it should mention VBT as options for one to discuss with a surgeon.

Surgeons only doing fusion don't talk with patients about Vbt and when they are asked about it, they says only that is not enough proved.. nothing about the big advantages over fusion.. is it part of the same coincidence?..

Pooka1
01-23-2017, 10:02 PM
Absolutely false. Not only chiropractors works with Spinecor and of course surgeons can make it works since is the invention of surgeons (although there was another very much similar centuries ago). If some of them don't believe in those journal articles is simply because they don't want to believe in nothing else than fusion.. coincidently what they are doing since decades ago.. what a coincidence!.

This is an ignorant statement.

The surgeons who couldn't make Spinecor work, and the surgeons who don't believe the journal articles, are often using hard braces and/or VBS and/or VBT. These people are NOT just doing fusions. You don't know what you are talking about and it shows. You are spouting a crackpot conspiracy theory and it shows.

Pooka1
01-23-2017, 10:10 PM
Surgeons only doing fusion don't talk with patients about Vbt and when they are asked about it, they says only that is not enough proved.. nothing about the big advantages over fusion.. is it part of the same coincidence?..

They probably are telling patients it is still experimental which it is. They are probably telling patients to talk with the surgeons who are trained in the technique. What you don't understand is the top pediatric orthopedic surgeons are BOOKED SOLID. Try getting a fusion over a school break without booking far ahead. They don't need more patients. You are very ignorant about this topic.

It POTENTIALLY has big advantages. That is different from what you stated. Again, you don't know what you are talking about.

flerc
01-23-2017, 10:22 PM
Surgeons only doing fusion don't talk with patients about Vbt and when they are asked about it, they says only that is not enough proved.. nothing about the big advantages over fusion.. is it part of the same coincidence?..

Is comic to see you talking about launching a theory of conspiracy really.
How many surgeons do you know working with Vbt? What have to do they uses hard braces? Is part of the protocol, they have no choice and certainly most of them don't take into account about them what they should.

flerc
01-23-2017, 10:33 PM
They probably are telling patients it is still experimental which it is. They are probably telling patients to talk with the surgeons who are trained in the technique. What you don't understand is the top pediatric orthopedic surgeons are BOOKED SOLID. Try getting a fusion over a school break without booking far ahead. They don't need more patients. You are very ignorant about this topic.

It POTENTIALLY has big advantages. That is different from what you stated. Again, you don't know what you are talking about.


Probably, probably, talk about facts as I did! I'm not speculating, I know what much surgeons says. Surely your fault of logic don't allow you to see the diference.
'Try getting a fusion over a school break without booking far ahead. They don't need more patients.' and probably many of the surgeons that you say wants that it never changes.

flerc
01-23-2017, 10:48 PM
It POTENTIALLY has big advantages. That is different from what you stated.

Surely if you would be a surgeon (I'm not sure really) you would do the same with your patients.. until the 'honest' Fda don't aproves it, you would not encourages your patients to select it.

burdle
01-24-2017, 07:27 AM
Flerc - the thread is about what NSF does!

There is NO suggestion that NSF is involved in a conspiracy regarding fusion surgery. NSF is all about awareness and options. It is based on a humanitarian mission.

I was just suggesting that in order to be 'up-to-date' it should maybe mention VBT- it is up to patients to pursue their options. You have hijacked a thread to bang on about a conspiracy without an facts.

And chiropractors recommending SPINECOR is an IRRELEVANCE. Chiropractors would recommend Tomato Ketchup as a treatment if they though they could get away with it!. They are not rooted in medical science or evidence!

flerc
01-24-2017, 08:04 AM
There's a clear fact against what you say about Nsf: they not only never fired Pooka1, they helped her very much to do her work here. Nobody say her nothing when she hijacked (first than me) this thread defaming Spinecor. Everything non surgical (not only something not emerging directly from western science as Chiropractics) will be allways her tarject here, they will always allows it.

Pooka1
01-24-2017, 08:11 AM
There's a clear fact against what you say about Nsf: they not only never fired Pooka1,

I don't work for NSF. You are too confused to post on the forum. Please go away.

burdle
01-24-2017, 12:17 PM
Hi,

Just to clarify for Flerc- as Linda R said- the forum - where we post, is part of NSF. NSF is the static umbrella site that has a link to the forum. The forum is a godsend for those of us who want to share info and experiences and pass on knowledge.

The NSF static site is something that I have only recently started to explore and my comments regarding fact-finding (donations and info on it) and my suggestions (regarding VBT) were concerned only with NSF static site, not the forum.

flerc
01-24-2017, 02:13 PM
I don't work for NSF. You are too confused to post on the forum. Please go away.

Certainly I didn't say that, but your lack of logics don't allows you to understand nothing.. ayway is too much clear your work here of course, as ever trying to convince people to don't prove with non surgical methods, fortunatelly this forum is not anymore the biggest scoliosis site around the world, and without help you cannot do nothing in other site!.

flerc
01-24-2017, 02:31 PM
Hi,

Just to clarify for Flerc- as Linda R said- the forum - where we post, is part of NSF. NSF is the static umbrella site that has a link to the forum. The forum is a godsend for those of us who want to share info and experiences and pass on knowledge.

The NSF static site is something that I have only recently started to explore and my comments regarding fact-finding (donations and info on it) and my suggestions (regarding VBT) were concerned only with NSF static site, not the forum.

Every foundations I know has also a forum, I suppose that the owner of this forum are the same that the owners of Nsf. If they are paying or not to Pooka1 to do difame non surgical methods, of course I cannot know, I only know that they seems to be happy with her doing what she does, so they cannot be good people.

LindaRacine
01-24-2017, 03:15 PM
Every foundations I know has also a forum, I suppose that the owner of this forum are the same that the owners of Nsf. If they are paying or not to Pooka1 to do difame non surgical methods, of course I cannot know, I only know that they seems to be happy with her doing what she does, so they cannot be good people.

Almost the last straw fierc. You need help.