I am kind of regretting my surgery.
https://www.statnews.com/2017/06/01/...-back-surgery/
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I am kind of regretting my surgery.
https://www.statnews.com/2017/06/01/...-back-surgery/
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!
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.Quote:
Originally Posted by Pooka1
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.Quote:
Originally Posted by Pooka1
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.
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.Quote:
Originally Posted by richardis
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.
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.Quote:
Originally Posted by richardis
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.Quote:
Originally Posted by Pooka1
I don't mind you saying that if you have evidence for that. Only evidence matters.Quote:
Originally Posted by richardis
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.Quote:
Originally Posted by Pooka1
I am sorry you are having this experience.Quote:
Originally Posted by richardis
But you should realize it is completely irrelevant to the experience of my girls.
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
Don't give the researchers that comfortable pillow. Spinal fusion is reversible. There is some proof of that already.Quote:
Originally Posted by titaniumed
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?Quote:
Originally Posted by richardis
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.Quote:
Originally Posted by Pooka1
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.
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..Quote:
Originally Posted by richardis
my disks are intact. the fusion is posterior.Quote:
Originally Posted by flerc
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?Quote:
Originally Posted by richardis
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.
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.Quote:
Originally Posted by richardis
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.
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?Quote:
Originally Posted by richardis
Spinecor allows to hold the spine straight, probably not so much as Vbt but movility is absolute.
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.Quote:
Originally Posted by Pooka1
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.
Total disk replacement, something as an artificial diskQuote:
Originally Posted by richardis
Scolioscore had not any official trial, Fda trusted in the company.Quote:
Originally Posted by richardis
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.
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.Quote:
Originally Posted by Pooka1
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.
You seems to be confused with rigid braces. Spinecor NEEDS muscle activity otherwise reduction in brace would be impossible!Quote:
Originally Posted by Pooka1
The cases followed should only be done when significant reduction in brace was achieved but something so obvious seems to be difficult to understand.
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.
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.Quote:
Originally Posted by richardis
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.
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.Quote:
Originally Posted by flerc
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.
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.
I don't understand how may be vertebras fused and disks intact.Quote:
Originally Posted by richardis
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.
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.Quote:
Originally Posted by richardis
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.
In adolescents, the discs are rarely removed during a fusion as far as I know. My daughters have all their discs. None were removed.
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.Quote:
Originally Posted by Pooka1
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?
CLEAR? don t mention that.Quote:
Originally Posted by flerc
I have no idea.Quote:
Originally Posted by richardis
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.Quote:
Originally Posted by Pooka1
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%.
So how is the fusion achieved? Why they needs bone?Quote:
Originally Posted by Pooka1
They fuse across the disc from vertebrae to vertebrae. This is obvious from every radiograph of every kid I have ever seen posted here.Quote:
Originally Posted by flerc
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?Quote:
Originally Posted by Pooka1
I assume they say that because then the curve will come back. There is no point to fuse and then unfuse.Quote:
Originally Posted by flerc