Treatment for TMJ with Dr Amir

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Treatment for TMJ with Dr Amir

Postby gingermagic » Thu Apr 11, 2013 7:24 am

I have not dropped in here for approximately 4 years since an excellent liberation with Dr Petrov in Bulgaria. I also visited Dr Sclafani in New York around 1 year ago.As you know. alyhough liberation is a great thing, some improvements can be temporary.

But the results of these treatments have not matched the benefits that I have felt, only one month into (brace) treatment with Dr Amir. On arriving at Amir's clinic I started with what I would say is a healthy skepticism of TMJ treatment (with regard to MS). I entered the clinic with an EDSS of around 3.5. Within a month, this has already dropped to 3.0/2.5.

I had a terrible brain fog problem, which at times were crippling. and although a visit to Sal Sclafani helped my brain fog considerably, I would say my current dental brace has given me a clear headed-ness and quick thing that I only remember having as a vague memory.

My walking has as has my sleep and mental fatigue has reduced considerably.

I am in no way free of MS, but I can only say the improvements that I have experienced in one month are nothing short of miraculous!
User avatar
gingermagic
Newbie
 
Posts: 7
Joined: Tue Jan 05, 2010 4:00 pm

Advertisement

Re: Treatment for TMJ with Dr Amir

Postby EJC » Thu Apr 11, 2013 11:57 am

It was nice to meet you on Tuesday J.

It's good to see new faces each time we visit Amir for adjustments.

There's certainly something to this TMJ thing.
User avatar
EJC
Family Elder
 
Posts: 616
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: Treatment for TMJ with Dr Amir

Postby Rosegirl » Thu Apr 11, 2013 4:12 pm

Would you be kind enough to describe the brace? Was it a custom made device that took weeks to make or something that he could make while you were there? Is it something you wear for part of a day or continuously?

Thanks!
User avatar
Rosegirl
Family Elder
 
Posts: 240
Joined: Sat Jan 23, 2010 4:00 pm

Re: Treatment for TMJ with Dr Amir

Postby civickiller » Thu Apr 11, 2013 5:31 pm

Rosegirl wrote:Would you be kind enough to describe the brace? Was it a custom made device that took weeks to make or something that he could make while you were there? Is it something you wear for part of a day or continuously?

Thanks!


interested to know too
User avatar
civickiller
Family Elder
 
Posts: 557
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Re: Treatment for TMJ with Dr Amir

Postby Thekla » Thu Apr 11, 2013 11:49 pm

I can tell you about my braces. I've just gotten a new one with some different wires. It is custom made from a mold of my mouth. This is an upper brace and I wear it all of the time, just removing it to eat. I also have a lower, more complicated one that I only use a couple times a day. He has a technician in the office and sometimes they can make a simple brace while I wait in a couple hours. More complicated braces take longer and I need to go back. If he had to send the work out to a lab, it would take much longer. I've never seen another brace that looks just like mine, similar, but not the same.
User avatar
Thekla
Family Elder
 
Posts: 144
Joined: Sun Jul 04, 2010 3:00 pm
Location: Germany

Re: Treatment for TMJ with Dr Amir

Postby EJC » Fri Apr 12, 2013 5:07 am

As above - Emma's braces are all bespoke, in the 17 months she's been seeing Amir she's had 4 to 5 different upper designs and 2 to 3 different lower brace designs, each one adjustable and each produced to move specific teeth to a specific position.

Emma wears these on average 20 hours a day.

On top of this there was a period of a few months fixed braces.

Then on top of that again there's an incredibly strange looking contraption you wear designed to "pull" the upper jaw forward.

Amir is quite guarded with his designs (they are after all his intellectual property), he asks patients not to publish images on line for the whole world to see, it leads to dentists making copies to have a go and often doing more harm than good. Which is terribly sad as I would like nothing more than to publish everything I can so as many people as possible could benefit.

What is comes down to though is what Amir does with the braces and different appliances as much as the appliance itself. Almost all Emma's braces have had multiple adjustments.

In most cases Amir will take an impression and Majeet (excuse the spelling!) who is Amirs technician, makes them up over the next few days. That's ok for us we're lucky enough to live an hours drive away. But for patients like Thelka and a number of others that we've met who have flown in from Slovakia, Saudi Arabia, Germany and Glasgow even - he can get them made up in a matter of hours on the premises.

The waiting room does get a little congested on these days and the local coffee shops benefit from a little extra business.
User avatar
EJC
Family Elder
 
Posts: 616
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: Treatment for TMJ with Dr Amir

Postby gingermagic » Fri Apr 12, 2013 9:12 am

I can only describe my brace as the type worn by teenagers (removable)! I try and wear it as much as possible, only removing it to eat.

I would say that I am good judge of character and can tell some-one of truly altruistic intentions at 20 paces. Amir needs to charge a fee to pay all the people who work for him and to pay for all the equipment he uses.

At the same time as carrying out research to investigate the success of his treatment he is trying to positively help those who need help. When it met Sal Sclafani, I felt exactly the same way.

These are people that, we without MS cannot do without. Thank god for selfless individuals.

As time goes by I can see that Amir continuously monitors your teeth, and how they must move to successfully adjust the atlas appropriately.

In summary, I truly feel in my heart that I am on the correct path.

I intend to show the graphs of my improvement when I can!
User avatar
gingermagic
Newbie
 
Posts: 7
Joined: Tue Jan 05, 2010 4:00 pm

Re: Treatment for TMJ with Dr Amir

Postby Thekla » Fri Apr 12, 2013 11:57 am

I wore braces far too long as a teenager and none of that was anything like what I've had from Amir! I guess this is just an illustration of how individual his treatments are.

I got a new brace Saturday and I've had the best week since! My legs are still not 'fixed' but I'm sure they will require quite a bit of pt. The biggest struggle for me has been my bladder and there seems to be a direct connection from my jaw to my bladder! Every time my brace needed adjusted, my bladder would get worse. This week I actually forgot about it and that was the most amazing difference. My life has been revolving around my bladder for years---it is such freedom to just have a cup of tea or coffee or a beer because you want it and not think about how soon you need to head towards the toilet and whether you can get there in time without a pee-pad failure. It still isn't perfect but I've had a reminder of normal life. For most of the week, I've been wearing jeans, confident that they would stay dry and they did. I know eventually the normal times will extend and I will have a life again. The legs are less of an aggravation when I'm not trying to drag myself to the toilet so often, but they do seem to work a touch better when the bladder is better. They feel stronger and my balance is better. I couldn't have imagined a brace having such an effect.
User avatar
Thekla
Family Elder
 
Posts: 144
Joined: Sun Jul 04, 2010 3:00 pm
Location: Germany

Re: Treatment for TMJ with Dr Amir

Postby CureOrBust » Fri Apr 12, 2013 3:30 pm

gingermagic wrote:In summary, I truly feel in my heart that I am on the correct path.

Thekla wrote:I know eventually the normal times will extend and I will have a life again.
Its beliefs as these that place you in a high "risk" category for placebo effects. Add to that a practitioner that adamantly also believes in the treatment and it makes it clear why they use double blind placebo controlled trials.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Treatment for TMJ with Dr Amir

Postby EJC » Fri Apr 12, 2013 3:42 pm

CureOrBust wrote:Its beliefs as these that place you in a high "risk" category for placebo effects. Add to that a practitioner that adamantly also believes in the treatment and it makes it clear why they use double blind placebo controlled trials.


It's terribly difficult to actually create a double blind trial for something like a physical adjustment or treatment that uses appliances.

This is where applying study techniques for drugs to non drug treatment hits a wall.

If you can come up with a technique for a genuine double blind study for Jaw misalignment treatment then a lot of people will be all ears. It's not as easy as two identical looking pills - one sugar one the drug. In fact, come up with something plausible and Amir would probably be at the front of the queue awaiting verification.

I do understand where you are coming from though.
User avatar
EJC
Family Elder
 
Posts: 616
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: Treatment for TMJ with Dr Amir

Postby Amir » Fri Apr 12, 2013 9:57 pm

EJC wrote:
CureOrBust wrote:Its beliefs as these that place you in a high "risk" category for placebo effects. Add to that a practitioner that adamantly also believes in the treatment and it makes it clear why they use double blind placebo controlled trials.


It's terribly difficult to actually create a double blind trial for something like a physical adjustment or treatment that uses appliances.

This is where applying study techniques for drugs to non drug treatment hits a wall.

If you can come up with a technique for a genuine double blind study for Jaw misalignment treatment then a lot of people will be all ears. It's not as easy as two identical looking pills - one sugar one the drug. In fact, come up with something plausible and Amir would probably be at the front of the queue awaiting verification.

I do understand where you are coming from though.

Perhaps one can pay attention to the findings of a reputable scientist about all these study outcomes which some find so convincing:

Prof George Ebers: MD Professor of Neurology Chair of Clinical Neurology University of Oxford, UK
Tue Jan 29, 2013

"Clinical trials of multiple sclerosis have been uniform in utilizing invalidated outcome measures. This has occurred to a degree for which it is difficult to find parallels in medicine in general. We have recently evaluated the outcomes which have been used for evaluating past trials leading to drug approval and current trials. It is not a pretty sight.
It is quite clear from natural history studies that relapses have very little if anything to do with long term outcome.
Similarly, MRI measures have been thoroughly evaluated within large data sets and found to be similarly non-predictive for meaningful outcomes.
The measures of disability used in trials certainly don’t measure unremitting disability as investigators and their industry supporters have claimed.
The widespread embracing of dubious and poorly validated outcomes by some ‘MS’ investigators, often in contexts where there are egregious conflicts of interest, threaten academic credibility not to mention long term professional autonomy."
User avatar
Amir
Family Elder
 
Posts: 203
Joined: Sat Nov 21, 2009 4:00 pm
Location: London UK

Re: Treatment for TMJ with Dr Amir

Postby CureOrBust » Sat Apr 13, 2013 1:42 am

Amir wrote:Perhaps one can pay attention to the findings of a reputable scientist about all these study outcomes which some find so convincing
I think you misread his point. For one thing, without reading the full article, I would say what you presented was his pinion. Not his findings. Science is not about finding one person who you agree with. You also misread my point, I was not suggesting anywhere that you use the same "invalidated outcome measures".
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Treatment for TMJ with Dr Amir

Postby EJC » Sat Apr 13, 2013 2:15 am

Amir wrote:
EJC wrote:
CureOrBust wrote:Its beliefs as these that place you in a high "risk" category for placebo effects. Add to that a practitioner that adamantly also believes in the treatment and it makes it clear why they use double blind placebo controlled trials.


It's terribly difficult to actually create a double blind trial for something like a physical adjustment or treatment that uses appliances.

This is where applying study techniques for drugs to non drug treatment hits a wall.

If you can come up with a technique for a genuine double blind study for Jaw misalignment treatment then a lot of people will be all ears. It's not as easy as two identical looking pills - one sugar one the drug. In fact, come up with something plausible and Amir would probably be at the front of the queue awaiting verification.

I do understand where you are coming from though.

Perhaps one can pay attention to the findings of a reputable scientist about all these study outcomes which some find so convincing:

Prof George Ebers: MD Professor of Neurology Chair of Clinical Neurology University of Oxford, UK
Tue Jan 29, 2013

"Clinical trials of multiple sclerosis have been uniform in utilizing invalidated outcome measures. This has occurred to a degree for which it is difficult to find parallels in medicine in general. We have recently evaluated the outcomes which have been used for evaluating past trials leading to drug approval and current trials. It is not a pretty sight.
It is quite clear from natural history studies that relapses have very little if anything to do with long term outcome.
Similarly, MRI measures have been thoroughly evaluated within large data sets and found to be similarly non-predictive for meaningful outcomes.
The measures of disability used in trials certainly don’t measure unremitting disability as investigators and their industry supporters have claimed.
The widespread embracing of dubious and poorly validated outcomes by some ‘MS’ investigators, often in contexts where there are egregious conflicts of interest, threaten academic credibility not to mention long term professional autonomy."


I pretty much agree with most of that text above. It's terribly difficult to evaluate a condition that seems to be not understood at all.

Lesions seem to have nothing to do with disability and vica versa, "relapses" appear to be entirely random.

So before we even consider the parameters of a study, we've got to agree on how to measure the condition/illness to start with. The closest thing that currently exists is the EDSS scale, even that isn't exactly scientific.

How do we measure how someone "feels"?

I remember Emma's CCSVI procedure, she had a noticeable and substantial change in eyesight to a degree that there was a large improvement in prescription in her glasses. The EHC were terribly excited as it was a measurable outcome, but pretty much the only accurately measurable outcome. But even then, I remember asking Emma's Neurologist how a procedure that dealt with a valve issue in Emma's ijv's created an instant improvement in eyesight and prescription. His response - "It's placebo - she just thinks she can see better" - I kid you not - even armed with a 20% improvement in prescription, no more double vision and enhanced colour vision her Neurologist told her the procedure was "Snake oil" and "any positive result could only be placebo".

How can you possibly reason with someone with that mindset?

I just can't imagine how you'd create a double blind study for anything other than an administered drug.

What do you suggest Cure? What should the scientific community be doing to create a measurable study of people with MS?
User avatar
EJC
Family Elder
 
Posts: 616
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: Treatment for TMJ with Dr Amir

Postby Amir » Sat Apr 13, 2013 6:15 am

CureOrBust wrote:
Amir wrote:Perhaps one can pay attention to the findings of a reputable scientist about all these study outcomes which some find so convincing
I think you misread his point. For one thing, without reading the full article, I would say what you presented was his pinion. Not his findings. Science is not about finding one person who you agree with. You also misread my point, I was not suggesting anywhere that you use the same "invalidated outcome measures".


I do not know what you read there but the ruse of scientific inquiry with double blind studies masquerades the fact that the drug being evaluated is often essentially for symptomatic relief and hardly ever a cure.

The study is only there to prove which drug has fewer side effects or is more profitable. It is actually an exercise to get licensing rather than any other altruistic goal.

Since NONE of the MS drugs being commented upon by Professor Ebers provide a cure, unlike the way antibiotics did half a century ago, medicine remains a question of empirical inquiry and anecdotal evidence no matter how much you may want to support even validated "double blind outcome measures".
User avatar
Amir
Family Elder
 
Posts: 203
Joined: Sat Nov 21, 2009 4:00 pm
Location: London UK

Re: Treatment for TMJ with Dr Amir

Postby Rosegirl » Sat Apr 13, 2013 8:28 am

Regarding changes in vision after a CCSVI procedure:

I told my opthamologist that my ability to read the tiniest of print was completely restored after my CCSVI procedure. He said that changes in vision were common any time a procedure changed the amount/flow of fluid in the skull. As the pressure around the eyeball changed, so did the eye's focal point. So much for magic! It's been a couple of years since that procedure and my ability to read the little stuff on a pill bottle is slightly less, but still far better than before the CCSVI procedure.
User avatar
Rosegirl
Family Elder
 
Posts: 240
Joined: Sat Jan 23, 2010 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: David1949


Contact us | Terms of Service