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richardis
06-01-2017, 03:56 PM
I am kind of regretting my surgery.

https://www.statnews.com/2017/06/01/tiger-woods-spinal-fusion-back-surgery/

richardis
06-01-2017, 05:33 PM
It is up to the SRS to issue a statement if they want to stay relevant and give some credibility to what they are doing.

This is not science-based medicine. The silence from the SRS is not acceptable anymore. We want transparency. Why they ommit horror stories?

Big pharma, big insurance, medical implants businesses, and attorneys are washing away the truth and putting pressures on doctors to perform surgeries.

They will become irrelevant as the truths are known and are spread to the the general public.
Doctors and surgeons are puppets on the hands of these big businesses. Reps from these industries are influencing doctors just for the sake of money.

If doctors are not well-paid they will become easy-preys and will be manipulated by the industries they rely on to pratice their profession.

SPEAK UP!

Pooka1
06-01-2017, 09:45 PM
richardis, you are mixing apples and oranges.

The operation Tiger Woods got is a one or two level fusion for back pain. This is one of the most over-used and useless surgeries being done. It is scandalous.

This has NOTHING to do with long fusions done for scoliosis. Posterior fusions are the gold standard of treatment for surgical range scoliosis. There is no other treatment as effective for curvature. For pain, the best treatment is less clear. Fusion saved the lives of my daughters. And given your curve is now <10 degrees, fusion has technically cured you of scoliosis.

burdle
06-02-2017, 07:14 AM
richardis, you are mixing apples and oranges.

The operation Tiger Woods got is a one or two level fusion for back pain. This is one of the most over-used and useless surgeries being done. It is scandalous.

This has NOTHING to do with long fusions done for scoliosis. Posterior fusions are the gold standard of treatment for surgical range scoliosis. There is no other treatment as effective for curvature. For pain, the best treatment is less clear. Fusion saved the lives of my daughters. And given your curve is now <10 degrees, fusion has technically cured you of scoliosis.

I second this- fusion for Scoliosis is totally different. It is bad enough that the individual scoliosis terms get all muddled up - we don't need to confuse sufferers any more with scare stories about fusion surgery for totally different back issues.

richardis
06-02-2017, 08:01 AM
richardis, you are mixing apples and oranges.

The operation Tiger Woods got is a one or two level fusion for back pain. This is one of the most over-used and useless surgeries being done. It is scandalous.

This has NOTHING to do with long fusions done for scoliosis. Posterior fusions are the gold standard of treatment for surgical range scoliosis. There is no other treatment as effective for curvature. For pain, the best treatment is less clear. Fusion saved the lives of my daughters. And given your curve is now <10 degrees, fusion has technically cured you of scoliosis.

In some part, I agree. But why aren't spinal fusions as effective for normal spines as they do for deformities? Nerve compression isn't the cause of pain, certainly (this in spinal fusions done on normal spines) . Muscle imbalances in scoliosis? Maybe or quite certainly. But less mobility means more stiffness.

Spinal fusions are great for deformities because of the cosmetical benefits which play a role on the mental well-being and confidence.

I choose surgery due to pain and it hasn't worked out yet. I am not cured, I simply have less mobility and a straighter spine.
Not to be a bummer, but let your daughters age. So far, so good. I wish them the best.

I will always push for a cure, not a fix. The science behind a spinal fusion is the same for every condition they apply it to, be it a one-level fusion or a (+)ten-level fusion. They have to push the frontiers of knowledge. They study so many years and the best they can come up to is a rod to straighten it up? Sorry, but even a kid in elementary school would come up with that simple fix.

Pooka1
06-02-2017, 08:53 AM
I will always push for a cure, not a fix. The science behind a spinal fusion is the same for every condition they apply it to, be it a one-level fusion or a (+)ten-level fusion. They have to push the frontiers of knowledge. They study so many years and the best they can come up to is a rod to straighten it up? Sorry, but even a kid in elementary school would come up with that simple fix.

No the science isn't the same. One or two level fusions for pain are not usually successful as far as I know. I read about one surgeon who was doing these all day and finally just had to stop because they weren't working for pain. Now he investigates pain at the level of the brain.

Long fusions for scoliosis in kids at least is almost always a huge success. That is what there is a consensus about fusing large progressive T curves. We have the evidence. My daughters would be dead if they weren't fused. One had a curve that moved 5 degrees a month. She was literally collapsing. She also now does not technically have scoliosis (curve < 10 degrees) and has a normal life with no deformity or pain. Her surgeon LITERALLY saved her life. I don't know how to make this any clearer to you. Surgeons save kids all the time. Not just from collapsing spines but from the stigma of being deformed even if their spines wouldn't kill them outright.

While fusion is obviously an effective treatment for progression, it may not be for pain. That is much more complex. Many adults on this group have been fused for pain and it was successful. Some were not successful. Maybe the studies of pain at the level of the brain will eventually help you and these people.

Pooka1
06-02-2017, 08:55 AM
Not to be a bummer, but let your daughters age. So far, so good. I wish them the best.

They probably wouldn't be able to age now if they weren't fused. Your curve is not in the same league as theirs so maybe you are not able to relate. Their spines were collapsing. That is incompatible with life.

You probably have AIS unrelated to some other condition. My daughters have some connective tissue disorder that may or may not be Marfans. Your experience almost certainly does not map onto theirs. They lead normal lives. One is doing an internship where she is in a mountain stream every day rowing boats, retrieving fish traps, carrying sampling gear, etc. etc. NONE of this would be possible had she not been fused.

richardis
06-02-2017, 11:35 AM
They probably wouldn't be able to age now if they weren't fused. Your curve is not in the same league as theirs so maybe you are not able to relate. Their spines were collapsing. That is incompatible with life.

You probably have AIS unrelated to some other condition. My daughters have some connective tissue disorder that may or may not be Marfans. Your experience almost certainly does not map onto theirs. They lead normal lives. One is doing an internship where she is in a mountain stream every day rowing boats, retrieving fish traps, carrying sampling gear, etc. etc. NONE of this would be possible had she not been fused.
I am not saying that you didn't take the best decision for them.

Pooka1
06-02-2017, 06:49 PM
I am not saying that you didn't take the best decision for them.

I don't mind you saying that if you have evidence for that. Only evidence matters.

richardis
06-02-2017, 08:04 PM
I don't mind you saying that if you have evidence for that. Only evidence matters.

the only evidence I have is my experience. Sometimes the pain gets so bad that the only thing that I wish is to break the rods and the screws to feel free again. It is like being behind bars.

Pooka1
06-02-2017, 09:16 PM
the only evidence I have is my experience. Sometimes the pain gets so bad that the only thing that I wish is to break the rods and the screws to feel free again. It is like being behind bars.

I am sorry you are having this experience.

But you should realize it is completely irrelevant to the experience of my girls.

titaniumed
06-03-2017, 12:56 AM
When your the best golfer in the world with a spine problem, it sure gets covered in the media. Looks like he did a few microdiscectomies (in Park City, Utah) and finally ended up with a L5-S1 ALIF on 04/20/17. His 4th surgery. They tried microdiscectomy (which is not fusion) and it looks like it didn't work. He is under a lot of pressure to perform.

I did see an article where he did admit "screwing up" and I would bet big on this. Instant relief happened, and he grabbed a club too early and started swinging. Wow!, think about that Tiger Woods spine FORCE swinging that golf club......Extreme sports have a tendency to wreak havoc on discs. I had 4 lumbar herniation's by age 41.

The L5-S1 level is also the hardest level to fuse and It takes 12 months for bone to fuse. That is carved in stone someplace.

Single level or the having the works done in a full scoliosis surgery doesn't change the fact that ANY spine surgery is serious surgery. Everyone seems to forget these things...and surgeons will set recovery dates on the short side sometimes.

Tiger needs to wait a LONG time before picking up a golf club again..... If that level does not fuse, he will be in the news again with another serious failure and a revision on that level L5-S1 from the front can get complicated. I don't think revision surgery on this level has ever been reported here....

I sure spine surgeons in the know realize how serious this is.

Once surgery is done, there is no turning back....

Ed

richardis
06-03-2017, 12:56 PM
Once surgery is done, there is no turning back....
Ed

Don't give the researchers that comfortable pillow. Spinal fusion is reversible. There is some proof of that already.
It is called reverse-engineering. A doctor to be should aim to reverse that. If that is the answer a doc has to give me, then I could be a doctor myself.

Pooka1
06-03-2017, 01:00 PM
Don't give the researchers that comfortable pillow. Spinal fusion is reversible. There is some proof of that already.
It is called reverse-engineering. A doctor to be should aim to reverse that. If that is the answer a doc has to give me, then I could be a doctor myself.

Why do you want to reverse your surgery? Is your pain worse after surgery? How would your pain be now if you hadn't had surgery? Would you be in worse pain?

What does your surgeon say is causing your pain?

richardis
06-03-2017, 01:06 PM
Why do you want to reverse your surgery? Is your pain worse after surgery? How would your pain be now if you hadn't had surgery? Would you be in worse pain?

What does your surgeon say is causing your pain?
I want my mobility back. I want my muscles to give me more ROM. I want a cure, not a fix.

Yes, the pain in worse in some positions. For the most part it is worse, but for example I sit way more comfortably. Only time will tell.

flerc
06-03-2017, 05:44 PM
Don't give the researchers that comfortable pillow. Spinal fusion is reversible. There is some proof of that already.
It is called reverse-engineering. A doctor to be should aim to reverse that. If that is the answer a doc has to give me, then I could be a doctor myself.

I allways thought that fuision surgery should to be reversible at least at some significant level but I have never read nothing about it. Screws and bars may be removed but how could be possible to restore disks? Surely something like tdr may be used but sure that nobody around the world is thinking in this because they are sure that only fusion may hold the spine straight for ever, so they will never think in reverse it.. they don't want to hear about something as Spinecor for adults or Vbt..

richardis
06-03-2017, 06:09 PM
I allways thought that fuision surgery should to be reversible at least at some significant level but I have never read nothing about it. Screws and bars may be removed but how could be possible to restore disks? Surely something like tdr may be used but sure that nobody around the world is thinking in this because they are sure that only fusion may hold the spine straight for ever, so they will never think in reverse it.. they don't want to hear about something as Spinecor for adults or Vbt..

my disks are intact. the fusion is posterior.
what is tdr?

Spinecor? has anyone proof that it works?
VBT seems promising. I don't care about the FDA, I mean, the FDA is a just a screening admin to validate the treatments. Someone who knows that some therapy works has the green light of the FDA, the FDA just needs proof. If it works it will get approved, although it may take years because the GOV is slow and it takes way to many steps tu put a seal of quality on it. I am sure they ( researchers or docs ) must be celebrating now because they have tested it out and it has worked out. So, why would the FDA say no?

richardis
06-03-2017, 06:30 PM
my disks are intact. the fusion is posterior.
what is tdr?

Spinecor? has anyone proof that it works?
VBT seems promising. I don't care about the FDA, I mean, the FDA is a just a screening admin to validate the treatments. Someone who knows that some therapy works has the green light of the FDA, the FDA just needs proof. If it works it will get approved, although it may take years because the GOV is slow and it takes way to many steps tu put a seal of quality on it. I am sure they ( researchers or docs ) must be celebrating now because they have tested it out and it has worked out. So, why would the FDA say no?

Any FDA approved treatment goes through a trial. Then, it gets accepted or refused. If there is a trial someone is betting big on the success of it, because the rejection is already guaranteed. Unless they pass the test. So why would someone waste his or her time and resources to fail big on such an investment?

by the way, does someone has statistics about the approval rates ( or a YES to market a treatment, cure or product) of the FDA trials? It is not easy, but Newton or Einstein knew it first than anyone else as did some doctor or researcher who discovered a cure.

Pooka1
06-03-2017, 06:52 PM
Spinecor? has anyone proof that it works?

There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.

flerc
06-03-2017, 07:05 PM
my disks are intact. the fusion is posterior.
what is tdr?

Spinecor? has anyone proof that it works?
VBT seems promising. I don't care about the FDA, I mean, the FDA is a just a screening admin to validate the treatments. Someone who knows that some therapy works has the green light of the FDA, the FDA just needs proof. If it works it will get approved, although it may take years because the GOV is slow and it takes way to many steps tu put a seal of quality on it. I am sure they ( researchers or docs ) must be celebrating now because they have tested it out and it has worked out. So, why would the FDA say no?

Are your disks intact? As I understand fusion fuses vertebras adjacement, they uses bone to do this and disks are between vertebras. If not how may be irreversible?
Spinecor allows to hold the spine straight, probably not so much as Vbt but movility is absolute.

flerc
06-03-2017, 07:13 PM
There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.

Kids spines are suffering two opposite forces the gravity force downward and the growth force (yes, is a force) upward, so probably a rigid brace not allowing nothing else than growing up may be better.
But in adults is different and there is enough evidence that significant reduction in brace is possible. After removing it, who knows.. surely it depends on how many years and how many hours per day it was used and mainly, how much significant was the reduction in brace.

flerc
06-03-2017, 07:16 PM
what is tdr?


Total disk replacement, something as an artificial disk

flerc
06-03-2017, 07:38 PM
Any FDA approved treatment goes through a trial. Then, it gets accepted or refused. If there is a trial someone is betting big on the success of it, because the rejection is already guaranteed. Unless they pass the test. So why would someone waste his or her time and resources to fail big on such an investment?

by the way, does someone has statistics about the approval rates ( or a YES to market a treatment, cure or product) of the FDA trials? It is not easy, but Newton or Einstein knew it first than anyone else as did some doctor or researcher who discovered a cure.

Scolioscore had not any official trial, Fda trusted in the company.
In my country new pharm products approval will not require now more than a few months and if nothing bad is discovered in that time, they will be sell.. our president seems to think that the best way to be sure if something is bad is to wait and see how many people died consuming it.

richardis
06-03-2017, 07:40 PM
There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.

you are correct. Anyway, the FDA has approved fusion and as every institution created by humans it is fallible. So the FDA must revise its position about spinal fusion.

Both the SRS ( international society), and the FDA ( US-based) must intervene or revise their guidelines. The FDA is not 100% trustable, although it is the most trustworthy institution out there, but it is its mission to be as exact as humanly possible. They should address this ASAP. Can someone do some internet research about spinal fusions and the FDA position about them and post it here?

Who funds the FDA? The government (taxpayers?)? What are the FDA ties with industries? what are the criteria to attribute grants? who pays for that? What are the benefits that someone gets from an FDA approval? There are a lot of questions who remain unanswered.

why are grants attributed? What are the motivations that drive doctors or researchers to study scoliosis?
Patients who suffer from scoliosis are for sure the most motivated to find a cure, but why would someone who does not suffer from it choose to make a career out of it?

We, as patients must lead the way, we have the future on our hands. We need to make sure that some part of the budget of the government goes directly to research in spinal conditions. No one cares more about your health than you. Top specialists should be incentivized to study scoliosis or dedicate a career to it. The problem is not easy to solve so they will steer away to more risk-free careers in different fields of medicine.

Scoliosis is mostly studied by non-profit or private institutions. Why does the government fails to give resources to the advancement of our understanding of scoliosis? Private medicine is poorly regulated so we are susceptible to scams ( I don't know the reality that well in the USA, but my undestanding is that the GOV can only sue doctors due to malpractice and they hand over the healthcare to private practitioners who should follow certain rules). Those rules are easily broken ( because the GOV has no way to trace and make a clear track record of what and why a doctor choose to submit a person to some treatment. In fact, some doctors just pass the burden to the patient, making them sign an informed consent so they can wash his hands away from some possible complications or unexpected/unsuccessful outcomes) . But we owe more to private efforts. We are a small niche in the market, so the gov is mostly lobbied by groups of people who suffer from more common diseases. They are more profitable to doctors. Sad but true.

flerc
06-03-2017, 07:47 PM
For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.

You seems to be confused with rigid braces. Spinecor NEEDS muscle activity otherwise reduction in brace would be impossible!
The cases followed should only be done when significant reduction in brace was achieved but something so obvious seems to be difficult to understand.

flerc
06-03-2017, 08:03 PM
Certainly, when reduction in brace is achieved, progression is halt while the Spinecor is used!. The problem is that CLEAR is not interested in achieve reduction in brace, this is the reason why many adults using it continues with progression.

flerc
06-03-2017, 08:20 PM
you are correct. Anyway, the FDA has approved fusion and as every institution created by humans it is fallible. So the FDA must revise its position about spinal fusion.

Both the SRS ( international society), and the FDA ( US-based) must intervene or revise their guidelines. The FDA is not 100% trustable, although it is the most trustworthy institution out there, but it is its mission to be as exact as humanly possible. They should address this ASAP. Can someone do some internet research about spinal fusions and the FDA position about them and post it here?

Who funds the FDA? The government (taxpayers?)? What are the FDA ties with industries? what are the criteria to attribute grants? who pays for that? What are the benefits that someone gets from an FDA approval? There are a lot of questions who remain unanswered.

why are grants attributed? What are the motivations that drive doctors or researchers to study scoliosis?
Patients who suffer from scoliosis are for sure the most motivated to find a cure, but why would someone who does not suffer from it choose to make a career out of it?

We, as patients must lead the way, we have the future on our hands. We need to make sure that some part of the budget of the government goes directly to research in spinal conditions. No one cares more about your health than you. Top specialists should be incentivized to study scoliosis or dedicate a career to it. The problem is not easy to solve so they will steer away to more risk-free careers in different fields of medicine.

Scoliosis is mostly studied by non-profit or private institutions. Why does the government fails to give resources to the advancement of our understanding of scoliosis? Private medicine is poorly regulated so we are susceptible to scams ( I don't know the reality that well in the USA, but my undestanding is that the GOV can only sue doctors due to malpractice and they hand over the healthcare to private practitioners who should follow certain rules). Those rules are easily broken ( because the GOV has no way to trace and make a clear track record of what and why a doctor choose to submit a person to some treatment) . But we owe more to private efforts. We are a small niche in the market, so the gov is mostly lobbied by groups of people who suffer from more common diseases. They are more profitable to doctors. Sad but true.

Bussines are bussines and you or me have not enough power to change this world. See what happens with baldness, a fabulous bussines selling propecia, a drug (with the Fda approval) used for prostata cancer that alters hormonal and neurologicall system and produce serious sexual problems, depression, even some sucides are reported.. and every year you may see that the percentage of bald men increases.
But in order to achieve some change you need people wanting it, but people only wants to know which could be the best option for them now, they don't wants to think for themselves which could be the best possible option regardless if it exists or not today so they thinks that they cannot claim for something better.

richardis
06-03-2017, 08:27 PM
Are your disks intact? As I understand fusion fuses vertebras adjacement, they uses bone to do this and disks are between vertebras. If not how may be irreversible?
Spinecor allows to hold the spine straight, probably not so much as Vbt but movility is absolute.

Yes, I can see the disks in the x-rays. I am not sure if the disks are as lubricated as they were before surgery.

But I lost the ligaments, because the bones are fused. Some muscles are useless now because the bones are fused. Muscles attach on bones, so I don't know if the surgeon removed the muscles that move the vertebrae fused. I even don't know how the surgeon reattached the muscles to bones again. And this reattachmemt occured at the origin of muscles (not in the insertion of them) so there are a lot of things that were done in my surgery that are still a mistery to me. But I will get there.

richardis
06-03-2017, 08:41 PM
Quote Originally Posted by Pooka1
"There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults."

Pooka1, do you mean that muscle atrophies or muscles imbalances lead to bone deformities? That is a good observation. Are you claiming that are the imbalanced muslces forces that make scoliosis progress further into adulthood?
It has already crossed my mind, but I think the genes play a bigger role.

flerc
06-03-2017, 08:45 PM
Yes, I can see the disks in the x-rays. I am not sure if the disks are as lubricated as they were before surgery.

But I lost the ligaments, because the bones are fused. Some muscles are useless now because the bones are fused. Muscles attach on bones, so I don't know if the surgeon removed the muscles that move the vertebrae fused. I even don't know how the surgeon reattached the muscles to bones again. And this reattachmemt occured at the origin of muscles (not in the insertion of them) so there are a lot of things that were done in my surgery that are still a mistery to me. But I will get there.

I don't understand how may be vertebras fused and disks intact.
I have heard that muscles were cutted but I was not sure if it was only before new techniques.. I didn't know about ligaments really.
Any way it should to be analyzied if fusion may be reverse and replaced by Vbt.

Pooka1
06-03-2017, 10:19 PM
"There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults."

Pooka1, do you mean that muscle atrophies or muscles imbalances lead to bone deformities? That is a good observation. Are you claiming that are the imbalanced muslces forces that make scoliosis progress further into adulthood?
It has already crossed my mind, but I think the genes play a bigger role.

All braces including Spinecor take over for muscle by restricting movement. That results in atrophy and to the extent muscle strength can hold a curve (which may not be much), that is lost.

At first the Spinecor developers said no PT was necessary because it allowed so much movement (which may explain why it doesn't work to hold a curve). But they later changed that and said the patent should do PT also maybe to avoid the atrophy. It still doesn't work to avoid surgery.

Pooka1
06-03-2017, 10:20 PM
In adolescents, the discs are rarely removed during a fusion as far as I know. My daughters have all their discs. None were removed.

richardis
06-03-2017, 11:15 PM
All braces including Spinecor take over for muscle by restricting movement. That results in atrophy and to the extent muscle strength can hold a curve (which may not be much), that is lost.

At first the Spinecor developers said no PT was necessary because it allowed so much movement (which may explain why it doesn't work to hold a curve). But they later changed that and said the patent should do PT also maybe to avoid the atrophy. It still doesn't work to avoid surgery.

why a muscle with normal tonicity tends to lengthen? That means that a lenghtened muscle in a resting position can exert more extra force than a shortened muscle? this seems counter intuitive.

If muscles are atrophied they are shortened in length, contract more, are more rigid and tense up, exert less force, etc, etc,.. Is that correct?

Does muscular atrophy cause pain?

richardis
06-03-2017, 11:25 PM
Certainly, when reduction in brace is achieved, progression is halt while the Spinecor is used!. The problem is that CLEAR is not interested in achieve reduction in brace, this is the reason why many adults using it continues with progression.
CLEAR? don t mention that.

Pooka1
06-03-2017, 11:25 PM
why a muscle with normal tonicity tends to lengthen? That means that a lenghtened muscle in a resting position can exert more extra force than a shortened muscle? this seems counter intuitive.

If muscles are atrophied they are shortened in length, contract more, are more rigid and tense up, exert less force, etc, etc,.. Is that correct?

Does muscular atrophy cause pain?

I have no idea.

flerc
06-04-2017, 10:23 AM
All braces including Spinecor take over for muscle by restricting movement. That results in atrophy and to the extent muscle strength can hold a curve (which may not be much), that is lost.

At first the Spinecor developers said no PT was necessary because it allowed so much movement (which may explain why it doesn't work to hold a curve). But they later changed that and said the patent should do PT also maybe to avoid the atrophy. It still doesn't work to avoid surgery.

Spinecor is not a brace, people is confused because they decided to call it 'the dinamic brace'. A brace holds straight the spine applying forces in three dimensional points, so muscles might don't exists, they have nothing to do. To holds the spine straight with a rigid brace, they needs to stretch first the spine like surgery does, so if you put a rigid brace in a spine without stretch it before, none reduction in brace would be achieved and it could have sense to talk about muscular atrophy since almost no movement are allowed.
But if you put a Spinecor, the spine is not stretched before, the bands leads the body to stretch the spine by itself!. Surely the bands give some help to the muscles to holds then the spine straight but sure it could not remains straight without the muscle activity. It's a muscular solution, so is logic to recomends sports, any kind of sports as I know so is too much difficult to imagine some kind of atrophy of course.
And great reduction in brace are achieved, some doctors (no Clear doctors who seems to have not idea about how it works) removes the Spinecor if reduction in brace is under the 40%.

flerc
06-04-2017, 10:41 AM
In adolescents, the discs are rarely removed during a fusion as far as I know. My daughters have all their discs. None were removed.

So how is the fusion achieved? Why they needs bone?

Pooka1
06-04-2017, 01:53 PM
So how is the fusion achieved? Why they needs bone?

They fuse across the disc from vertebrae to vertebrae. This is obvious from every radiograph of every kid I have ever seen posted here.

flerc
06-04-2017, 08:31 PM
They fuse across the disc from vertebrae to vertebrae. This is obvious from every radiograph of every kid I have ever seen posted here.

So discs are only covered by bone. Why then don't removes that bone, screws and bars? Why everyone around the world says that fusion is irreversible?

Pooka1
06-04-2017, 08:48 PM
So discs are only covered by bone. Why then don't removes that bone, screws and bars? Why everyone around the world says that fusion is irreversible?

I assume they say that because then the curve will come back. There is no point to fuse and then unfuse.

flerc
06-04-2017, 10:06 PM
But this would be absolutely incorrect. Irreversible means the impossibility to return to the previous state. The only possibility would be if muscles and or ligaments were cutted. But any way it could be reversed and change it for something as Vbt.

Pooka1
06-04-2017, 10:30 PM
Nobody would want to return to the previous state. I don't think a surgeon can justify another operation ethically.

In terms of technical feasibility, if they didn't remove the discs, I am not sure why the fusion could not be revised. Maybe Linda knows.

flerc
06-04-2017, 10:53 PM
IS full of people around the world wanting to return to the previous state but all of them are absolutely sure that is something impossible.

Pooka1
06-04-2017, 10:54 PM
That is not rational.

flerc
06-04-2017, 10:59 PM
No, they allways heard that is impossible.

titaniumed
06-04-2017, 11:00 PM
Here is one reversal surgery I found. A Pro-disc was used on one or two cervical levels.....This lady had headache issues after neck fusion. This was done 7 years ago.
http://www.beckersspine.com/orthopedic-a-spine-device-a-implant-news/item/1649-dr-kenneth-light-performs-first-neck-fusion-reversal-in-united-states.html


Of course, scoliosis makes things trickier, and we had pro-disc discussions here many years ago. Some have had single pro-discs installed under fusion masses in the lower lumbar....This doesn't seem to have taken off...

Now, using pro-discs with tethering is quite a concept. If they could control the tension of the tether using a device like Magec, that might be an idea worth some thought. Possibly multiple tethers?

Ed

Pooka1
06-04-2017, 11:27 PM
Ed, what I don't understand is why tethering to include the lumbar wouldn't cause flatback and why it wouldn't cause hypokyphosis in the thorax. If it is tight enough to straighten the curve in the coronal plane then it must be tight enough to straighten the curve in the sagittal plane. If tethering doesn't pan out I suspect this will be the reason.

You know materials. What do you think about the possibility of the tether only working in one plane? I cannot imagine how that is physically possible.

richardis
06-05-2017, 01:00 AM
Nobody would want to return to the previous state. I don't think a surgeon can justify another operation ethically.

In terms of technical feasibility, if they didn't remove the discs, I am not sure why the fusion could not be revised. Maybe Linda knows.
This is simple: If they cut the bones again why would the bones be motionless? They may not be moveable by the innervation coming from the mind. But if other people moves the bones mechanically to you they would certainly move. Fact.

I would want a full mobile spine and a scoliosis-free spine? If someone doesn't, please raise their hand up.
The doctors do their own code of ethics, only the GOV can impose revisions, usually by demand of the people (democratic voting system) . But, ultimately, the life is yours, the code is theirs.

We know how to conceive an healthy-baby, right? We know how babies grow with straight spines. So why can't we crack the code? the question is: what went wrong? Don't tell me it is impossible.

Give children who suffer from scoliosis the opportunity to go to medical school and to be a researcher. That way, I am sure we would have already discovered the cure. Doctors' areas of interest or research are usually related to their own health-problems or to the problems of their loved-ones. That is the way the world works.

titaniumed
06-05-2017, 01:43 AM
Sharon, I don't see why you couldn't pull in any direction or plane you want, provided you were using "multiple" tethers. Multiple tethers using a device to adjust tension, would be an improvement.. One tether pulling down on a corkscrew is hard to control. Computerized tethering with tension adjustment would allow for daily bending and re-tighten up to straighten the spine while sleeping. You can do this adjusting like Magec with software, after periodic x-ray to decide force or adjustment.

Like a slinky....remember those? Controlling them was almost impossible.... balancing them in the palm of your hand? Well, that was a fast result and the scoliotic spine is a slow result with minimal unknown force parameters.

None of these things that involve hardware are easy. The future will not include hardware, it will be through genes. Gene therapy. Linda has mentioned this.

Mark Zuckerberg wants to cure all disease by the end of the century. When I watch him on video, the excitement is contagious....and that's what it takes. Its a challenge for the younger generations to dream, and its that kind of excitement that influences people. FB is a powerful organization....

Did the car companies waste their time by improving gas mileage when we could have pushed for electric vehicles decades ago? Now that the environment is now an issue? Emissions and pollution started a really long time ago so I guess it really was a waste of time. Spinal hardware is the same thing. If we could simply go to the next chapter, that would be best, but things are never that easy.

The software programmers are going to have to figure out how to analyse all the data. They will do it, I have no doubt, but its not going to happen quickly. (smug face)

I also wonder when they will tether the 1st kyphosis patient? For adult 100 degree kyphosis, they would probably have to use 2 parallel tethers and drive the screws in the pedicle's.

Ed

richardis
06-05-2017, 05:58 AM
straighten the spine while sleeping. You can do this adjusting like Magec with software, after periodic x-ray to decide force or adjustment.

. When I watch him on video, the excitement is contagious....and that's what it takes. Its a challenge for the younger generations to dream, and its that kind of excitement that influences people. FB is a powerful organization....


Ed

Hey, Ed!
great contribution. Can you post the link of the video?

Regarding the growth while sleeping, according to my research melatonine and growth hormone are inversely related, which means that sleeping has a negative or strange relationship with growing. Melatonine issues is being studied as a possible cause for scoliosis.

more info here: http://www.aboutkidshealth.ca/En/ResourceCentres/Scoliosis-Parents/AboutScoliosis/Pages/What-Causes-Scoliosis.aspx

Pooka1
06-05-2017, 08:05 AM
Sharon, I don't see why you couldn't pull in any direction or plane you want, provided you were using "multiple" tethers. Multiple tethers using a device to adjust tension, would be an improvement.. One tether pulling down on a corkscrew is hard to control. Computerized tethering with tension adjustment would allow for daily bending and re-tighten up to straighten the spine while sleeping. You can do this adjusting like Magec with software, after periodic x-ray to decide force or adjustment.

Like a slinky....remember those? Controlling them was almost impossible.... balancing them in the palm of your hand? Well, that was a fast result and the scoliotic spine is a slow result with minimal unknown force parameters.

Ed

Thanks for these comments. I agree you are probably going to need multiple tethers to counter straightening the spine in the sagittal plane.

"One tether puling down on a corkscrew" is a perfect description. All AIS has a rotational component. When you apply force on one side of a typical AIS curve, I am not grasping how that magically ONLY reduces the curve in the coronal plane and does nothing in the sagittal plane. I imagine there would be some improvement in the transverse plane.

Here is Lonner on the pros and cons of tethering... https://www.spineuniverse.com/professional/case-studies/lonner/vertebral-body-tethering-progressive-adolescent-idiopathic


Potential advantages of tethering as explained to the family include maintenance of flexibility within operated spinal segments, preservation of at least partial growth within those segments, growth modulation leading to correction of vertebral body wedging, and the potential to decrease adjacent segment degenerative disease over time.

Unknowns and concerns with the procedure include the potential for fixation failure or cord breakage, overcorrection through growth modulation in a skeletally immature patient, and disc degeneration within the instrumented spine.

Note the possibility of disc degeneration within the tethered area. This is analogous to flatback with the H rods due to the hypokyphosing when you have one element to straighten a "corkscrew". .

Computerized tethering you say. I think we need the IOT of scoliosis tethering. :-)

flerc
06-05-2017, 08:11 AM
Nobody would want to return to the previous state. I don't think a surgeon can justify another operation ethically.


Nobody in scoliosis forums since years ago may believe that nobody would want to returm to the day they had fusion and refuse it so of course reversing it would be ethical.

Pooka1
06-05-2017, 08:41 AM
Nobody in scoliosis forums since years ago may believe that nobody would want to returm to the day they had fusion and refuse it so of course reversing it would be ethical.

This is magical thinking.

If everyone would reverse their fusions then why does anyone ever get a fusion?

Your comment makes no sense. People are fused for a reason.

richardis
06-05-2017, 09:54 AM
This is magical thinking.

If everyone would reverse their fusions then why does anyone ever get a fusion?

Your comment makes no sense. People are fused for a reason.
How can people know what a fusion feels like until they do it? Pooka, no one knows what it feels like until they experience it by themselves.

flerc
06-05-2017, 12:10 PM
This is magical thinking.

If everyone would reverse their fusions then why does anyone ever get a fusion?

Your comment makes no sense. People are fused for a reason.

What you call magical thinking is in fact rational thinking. Nobody with that kind of thinking could find some sense in what you are saying, is like to ask why people married may wants the divorce. Absolutely absurd of course!. Do you need more examples? Anyone may give you infinites like this.
But certainly is impossible for me to conceive a mother of 2 daughters fused seeing as a nonsense and non ethical the possibility of reverse fusion.

Pooka1
06-05-2017, 12:41 PM
How can people know what a fusion feels like until they do it? Pooka, no one knows what it feels like until they experience it by themselves.

People get fused to stop progression or pain. If their fusions were reversed, their curves might continue to progress and compromise their health or kill them. My one daughter would probably be dead now if she wasn't fused for example. She certainly would never have finished high school not to mention gone to college with her unfused curve.

For the small percentage of people who have the same or more pain after fusion, it makes sense that they would want to reverse it. But for all the people who have less or no pain, obviously they would not want to reverse it. And even the people who have more pain with fusion might have been in even more pain eventually if they weren't fused.

In terms of what it feels like, I can only report what my daughters tell me. They say being fused isn't that much different from having a large curve in terms of ROM. So it isn't like they notice a big difference before and after fusion per their reports. That's when I realized that just having a large curve cuts down the ROM.

richardis
06-05-2017, 12:47 PM
you are correct. Anyway, the FDA has approved fusion and as every institution created by humans it is fallible. So the FDA must revise its position about spinal fusion.

Both the SRS ( international society), and the FDA ( US-based) must intervene or revise their guidelines. The FDA is not 100% trustable, although it is the most trustworthy institution out there, but it is its mission to be as exact as humanly possible. They should address this ASAP. Can someone do some internet research about spinal fusions and the FDA position about them and post it here?

Who funds the FDA? The government (taxpayers?)? What are the FDA ties with industries? what are the criteria to attribute grants? who pays for that? What are the benefits that someone gets from an FDA approval? There are a lot of questions who remain unanswered.

why are grants attributed? What are the motivations that drive doctors or researchers to study scoliosis?
Patients who suffer from scoliosis are for sure the most motivated to find a cure, but why would someone who does not suffer from it choose to make a career out of it?

We, as patients must lead the way, we have the future on our hands. We need to make sure that some part of the budget of the government goes directly to research in spinal conditions. No one cares more about your health than you. Top specialists should be incentivized to study scoliosis or dedicate a career to it. The problem is not easy to solve so they will steer away to more risk-free careers in different fields of medicine.

Scoliosis is mostly studied by non-profit or private institutions. Why does the government fails to give resources to the advancement of our understanding of scoliosis? Private medicine is poorly regulated so we are susceptible to scams ( I don't know the reality that well in the USA, but my undestanding is that the GOV can only sue doctors due to malpractice and they hand over the healthcare to private practitioners who should follow certain rules). Those rules are easily broken ( because the GOV has no way to trace and make a clear track record of what and why a doctor choose to submit a person to some treatment. In fact, some doctors just pass the burden to the patient, making them sign an informed consent so they can wash his hands away from some possible complications or unexpected/unsuccessful outcomes) . But we owe more to private efforts. We are a small niche in the market, so the gov is mostly lobbied by groups of people who suffer from more common diseases. They are more profitable to doctors. Sad but true.

I told you so. Smart UP.
https://www.statnews.com/2017/06/05/actemra-rheumatoid-arthritis-fda/
Healthcare is a business, after all. Doctors are losing credibility as credible information is spread to the general public. This is utterly upsetting. Doctors have no autonomy and rely on and comply to the orders of its superiors. They are puppets on the hands of drug companies in which they rely on to prescribe their RX. If they break the rules or don't get any profit to please the shareholders of private hospitals or even state-run hospitals they will get fired.

flerc
06-05-2017, 01:55 PM
People get fused to stop progression or pain. If their fusions were reversed, their curves might continue to progress and compromise their health or kill them. My one daughter would probably be dead now if she wasn't fused for example. She certainly would never have finished high school not to mention gone to college with her unfused curve.

For the small percentage of people who have the same or more pain after fusion, it makes sense that they would want to reverse it. But for all the people who have less or no pain, obviously they would not want to reverse it. And even the people who have more pain with fusion might have been in even more pain eventually if they weren't fused.

In terms of what it feels like, I can only report what my daughters tell me. They say being fused isn't that much different from having a large curve in terms of ROM. So it isn't like they notice a big difference before and after fusion per their reports. That's when I realized that just having a large curve cuts down the ROM.

About ROM I'm absolutely sure that it would be impossible to dance as my daughter danced all these years until she had an accident nothing having to do with this.
But of course is probably what you said and nobody may say that you didn't take a reasonable decision; scoliosis vicious cycle during growth is devasting in some cases and something too much blunt is needed to stop it and Vbt did not exist in those days.
But after growth is different. Sure that nobody reversing fusion could die because a terrible progression..except if muscles/ligaments would not be the same, but anyway having Vbt it should not happens.. or does Vbt like Spinecor also need soft tissue to hold the spine straight?.
Sure that nobody may be absolutely sure what may wants someone after decades, so sure for everyone who had fusion or their parents, the possibility of reversing it, should to be a good news!.

Pooka1
06-06-2017, 07:44 AM
I just spoke to my daughter who is doing a very physical internship out west in fisheries biology. She is in a stream every day, rowing boats, toting gear, etc. etc. I told her about this thread. She AGAIN said she feels completely normal. She does not feel any restriction or loss of ROM.

As I mentioned previously, a few years ago when she said the same thing, I asked her to bend in all directions. She has normal ROM front and back. Her side to side is less than mine but she does not perceive that as any different than before her fusion. That's when I realized people will big curves do NOT necessarily have normal ROM and what they do have seems completely normal to them. That's why the fusion changed nothing for her in terms of her ROM.

The bottom line is she has not had a normal ROM since at least a year before her surgery and she apparently doesn't remember what that was like. But if you don't remember what it is like since before your surgery, and the fusion doesn't change that lower ROM much, then you aren't going to register any issue with lower ROM. My daughter didn't realize she had a lower than normal ROM side to side until I showed her my bending side to side. But she can't relate to ever doing that so she feels normal.

When people without scoliosis think about this issue, they need to consider that normal is off the table in so many ways. The baseline is NOT necessarily normal ROM. If your baseline is something less than normal ROM, it is possible that a T fusion will change nothing as for my daughter.

Assuming the baseline for a person with a large curve is the same as for a normal person is just magical thinking and adds to the level of "fake news" that goes on so much on this forum.

flerc
06-06-2017, 02:22 PM
That's when I realized that just having a large curve cuts down the ROM.
This is an absolute and general sentence, so it would be valid (if it would be true) for everyone having a big curve, as my daughter has. So I said this 'About ROM I'm absolutely sure that it would be impossible to dance as my daughter danced all these years until she had an accident nothing having to do with this.' And I'm really absolutely sure about this because I have seen her dancing many times, which is the problem?. Where do you a see a "fake news"? as also in other posts you are saying I'm posting here? If you would be a good person you would have asked about the accident I commented instead to trying to accuse me about.. what? Do you want to see "fake news"? Read most of your posts!. Do you want me quoting much of them? Just only ask me.
And certainly this is sure also magical thinking for you https://www.ncbi.nlm.nih.gov/pubmed/16449904

flerc
06-06-2017, 03:00 PM
How can people know what a fusion feels like until they do it? Pooka, no one knows what it feels like until they experience it by themselves.

Of coures.. but it seems that having a magical thinking everything is possible so sure she can feels what you feel and then she knows that it has not any sense your wish of reversing your fusion.

richardis
06-07-2017, 09:05 PM
New leak
https://www.washingtonpost.com/business/economy/spinal-fusions-serve-as-case-study-for-debate-over-when-certain-surgeries-are-necessary/2013/10/27/5f015efa-25ff-11e3-b3e9-d97fb087acd6_story.html?utm_term=.4a6dc8c8d49b

we all know the blurred lines. Scoliosis is a case apart, but, then again, in one way or another, they are similar.

richardis
06-08-2017, 02:36 AM
New leak
https://www.washingtonpost.com/business/economy/spinal-fusions-serve-as-case-study-for-debate-over-when-certain-surgeries-are-necessary/2013/10/27/5f015efa-25ff-11e3-b3e9-d97fb087acd6_story.html?utm_term=.4a6dc8c8d49b

we all know the blurred lines. Scoliosis is a case apart, but, then again, in one way or another, they are similar.

This thread has reached almost 1000 views in a such a short period of time. I started it a week ago. This means something, right?
Do I need to say more? We have to motivate researchers to find a better solution. Maybe we ourselves, in an effort of collaboration will get there.

richardis
06-08-2017, 04:58 PM
This thread has reached almost 1000 views in a such a short period of time. I started it a week ago. This means something, right?
Do I need to say more? We have to motivate researchers to find a better solution. Maybe we ourselves, in an effort of collaboration will get there.

Hospitals masqueraded as businesses, you'd better go and talk to the SEC. Sooner or later you will have to action Chapter 9, Title 11.
WE KNOW IT. Disclose your fillings to the IRS.