ME caused by squeezed nerve?

[acer2000]

There is a condition called Chiari Malformation where the CSF flow in impeded by bones in the neck and it causes an increase in fluid pressure in the brain and symptoms that can be like ME/CFS. My ME/CFS doctor has this in his list of things to rule out. (It can be seen on MRI if they look for it). It can be cured via surgery. I don't think thats what is being discussed here, but I thought I'd mention it.

 

[Wayne]

(It can be seen on MRI if they look for it)

When I researched Chiari Malformation several years ago, I discovered that some who specialize in diagnosing and treating it believe that it takes special training to do so. When I looked into having an MRI locally, but wanted to send the images to a specialist, they refused to agree to that--so I dropped it. Just wanted to mention this if you do pursue this in the future.

Best, Wayne

 

[Mari66]

Hi all

Had to post again to reiterate what I have seen in Dr Amir's surgery, where my only interest is to help others
We could spend years doing double blind studies and gaining evidence but the evidence is there to see in his surgery in Putney and the many stories that I have heard

If I had a grain of doubt before, my daughter went a week longer than normal without seeing Dr Amir and the treatment went a little far, and guess what the symptoms came back after seven months, but a trip to Putney and adjustment of treatment has put it right again. The quack that others made reference to is the most knowledgeable and caring professional and for those or you suffering or if you have a loved one who is suffering you really don't need to, what I have seen has astounded me as a health professional.

Once again my only reason for posting this if this message gets to one person who benefits from it with this treatment it has been worth it

 

[Wayne]

Once again my only reason for posting this if this message gets to one person who benefits from it with this treatment it has been worth it

Hi @Mari66, I always appreciate your feedback. I've long believed there's far too little understanding, appreciation, and acknowledgement of how structural issues of all kinds can have such profound effects on the body.

 

[Mari66]

Yes I agree, has been a real shock to me and I have been a clinican for over 30 years!!

 

[Analucia]

Hi Mari--I wonder if dr. Amir is familiar with Dr. Farrand Robson's Oral System Biology work ? Their approaches look very similar.

Farrand C. Robson D.D.S. is the founding member of Oral Systemic Balance LLC, a research, development and training company in Tacoma, Washington. He is also involved in clinical practice at TMJ Diagnostics in Tacoma.

Continually asking questions and not accepting the status quo for results, Doctor Robson has uncovered a science that had not previously been recognized. His commitment has helped thousands of people experience pain free living and attain unbelievable peace. Doctor Robson’s impact on the world will continue to be felt for years to come.

His work has revealed the most basic physiologic system in the body and the oral origin of a variety of often debilitating symptoms as well as the neuromuscular mechanisms that maintain the oral system. The therapeutic system he developed is based on these discoveries and is designed to be broadly used by trained practitioners.
oral system biology.com

 

[Hip]

The treatment is simply too bizarre and there is no sensible explanation for how a misaligned jaw can result in neurological, muscular, GI, and immune symptoms throughout the entire body.

One idea I had that might explain Dr Amir's treatment successes is that the patients he treats have illnesses caused by inflammation in the trigeminal nerve, leading to the sickness behavior response in the brain, a response which can cause many of the symptoms of ME/CFS. By his jaw bone manipulations, Dr Amir may be alleviating the inflammation in the trigeminal nerve, which then results in improvements or remission from ME/CFS, or from a ME/CFS-like illness.

Both the vagus nerve and the trigeminal nerve are able to activate the sickness response in the brain when these nerves encounter inflammation or infection, so if there were inflammation in or around the trigeminal nerve, you might expect ME/CFS or an ME/CFS-like illness to appear. The sickness behavior response produces many symptoms which are found in ME/CFS (a list of sickness behavior symptoms is given in this post).

As is well-known, Michael VanElzakker's vagus nerve infection theory of ME/CFS attempts to explain ME/CFS in terms of the activation of sickness behavior.

(Some people like @Ian developed ME/CFS from a jaw bone infection, which probably caused ME/CFS via a sickness behavior mechanism triggered by the trigeminal nerve which sensed the inflammation arising from this infection.)



How could a misaligned jaw lead to or exacerbate inflammation in the trigeminal nerve and trigeminal ganglion?

Well it just so happens that the trigeminal nerve innervates much of the jaw, and in particular, the trigeminal ganglion is located near the jaw bone joint (the temporomandibular joint). Thus if there were jaw bone misalignment and/or an extreme tightness of the muscles around the temporomandibular joint (this is called temporomandibular joint dysfunction), this could conceivably impinge on the trigeminal ganglion and nerve, leading to or exacerbating inflammation in or around the nerve, thereby triggering sickness behavior.

The trigeminal nerve ganglion is located near the jaw
bone joint (temporomandibular joint): might a misaligned
jaw impinge on this ganglion, causing inflammation in
the nerve, triggering sickness behavior?

Even if the ME/CFS was triggered by an infection, I would not have thought this rules out the possibility the jaw misalignment / temporomandibular joint dysfunction may be playing a role in maintaining the disease. It could be that the infection is underpinning some trigeminal nerve inflammation, but the jaw misalignment is exacerbating this inflammation, perhaps via the very tight jaw muscles reducing the blood supply to the nerve.

Infections can definitely cause trigeminal nerve inflammation. For example, in Lyme disease, trigeminal neuralgia (facial pain arising from inflammation in the trigeminal nerve) can occur.

In fact it says in this article that:

Although the majority of affected patients report knee joint pain, a significant number also report temporo-mandibular joint (TMJ) symptoms. The TMJ is the fourth most commonly affected joint in Lyme disease.

Source: Temporal Mandibular Joint Disorder Due to Lyme Disease

And of course temporo-mandibular joint dysfunction is also a common comorbidity in ME/CFS, and like any comorbidity, may well be contributing to the pathophysiology of ME/CFS. So theoretically anything that can alleviate the TMJ dysfunction, such as the jaw re-alignment treatment that Dr Amir has been applying, may potentially be beneficial for ME/CFS.

Or another possibility to consider is that temporomandibular joint dysfunction might be mimicking the symptoms of ME/CFS. Indeed, Dr Amir actually published a short response in the British Medical Journal suggesting that temporomandibular joint dysfunction should be considered as a possible differential diagnosis in those believed to have ME/CFS:

Temporomandibular Joint dysfunction as a Differential Diagnosis in ME/CFS patients

 

[Analucia]

Hello @Hip and @Wayne. Below I'm posting a link where a Dentist (TMJ specialist), a cardiac nurse a MD and a patient discuss how TMJ treatments can help very different conditions, from MS, Cfs, Fibro to muscle dystrophy to cardiac issues etc. This interview blew my mind

Just get pass the first few minutes when they have some technical issues, btw they don't talk much about hormones

http://www.blogtalkradio.com/hormones-spoken-here/2010/12/17/hormones-spoken-here

I posted the following elsewhere, but since this thread is the main one containing info about Dr Amir's treatments, I thought it might be worth posting here as well:


One idea I had that might explain Dr Amir's treatment successes is that the patients he treats have illnesses caused by inflammation in the trigeminal nerve, leading to the sickness behavior response in the brain, a response which can cause many of the symptoms of ME/CFS. By his jaw bone manipulations, Dr Amir may be alleviating the inflammation in the trigeminal nerve and trigeminal ganglion, which then results in improvements or remission from ME/CFS, or from a ME/CFS-like illness.

As is well known, the vagus nerve can also trigger the sickness behavior response when this nerve encounters inflammation, and Michael VanElzakker's vagus nerve infection theory of ME/CFS posits that the vagus is chronically infected and thus chronically inflammed, leading to chronic activation of the sickness response. The sickness behavior response produces many symptoms which are found in ME/CFS (a list of sickness behavior symptoms is given in this post).

Both the vagus nerve and the trigeminal nerve are able to activate the sickness response in the brain when these nerves encounter inflammation or infection, so if there were inflammation in or around the trigeminal nerve, you might expect ME/CFS or an ME/CFS-like illness to appear.

(Some people like @Ian developed ME/CFS from a jaw bone infection, which probably caused ME/CFS via a sickness behavior mechanism triggered by the trigeminal nerve which sensed the inflammation arising from this infection.)



How could a misaligned jaw lead to or exacerbate inflammation in the trigeminal nerve and trigeminal ganglion?

Well it just so happens that the trigeminal nerve innervates much of the jaw, and in particular, the trigeminal ganglion is located near the jaw bone joint (the temporomandibular joint). Thus if there were jaw bone misalignment and/or an extreme tightness of the muscles around the temporomandibular joint (this is called temporomandibular joint dysfunction), this could conceivably impinge on the trigeminal ganglion and nerve, leading to or exacerbating inflammation in or around the nerve, thereby triggering sickness behavior.

The trigeminal nerve ganglion is located near the jaw
bone joint (temporomandibular joint): might a misaligned
jaw impinge on this ganglion, causing inflammation in
the nerve, triggering sickness behavior?
View attachment 11785​

Even if the ME/CFS was triggered by an infection, I would not have thought this rules out the possibility the jaw misalignment / temporomandibular joint dysfunction may be playing a role in maintaining the disease. It could be that the infection is underpinning some trigeminal nerve inflammation, but the jaw misalignment is exacerbating this inflammation, perhaps via the very tight jaw muscles reducing the blood supply to the nerve.

Infections can definitely cause trigeminal nerve inflammation. For example, in Lyme disease, trigeminal neuralgia (facial pain arising from inflammation in the trigeminal nerve) can occur.

In fact it says in this article that:


And of course temporo-mandibular joint dysfunction is also a common comorbidity in ME/CFS, and like any comorbidity, may well be contributing to the pathophysiology of ME/CFS. So theoretically anything that can alleviate the TMJ dysfunction, such as the jaw re-alignment treatment that Dr Amir has been applying, may potentially be beneficial for ME/CFS.

Or another possibility to consider is that temporomandibular joint dysfunction might be mimicking the symptoms of ME/CFS. Indeed, Dr Amir actually published a short response in the British Medical Journal suggesting that temporomandibular joint dysfunction should be considered as a possible differential diagnosis in those believed to have ME/CFS:

Temporomandibular Joint dysfunction as a Differential Diagnosis in ME/CFS patients

 

[winston]

Hello @Hip and @Wayne. Below I'm posting a link where a Dentist (TMJ specialist), a cardiac nurse a MD and a patient discuss how TMJ treatments can help very different conditions, from MS, Cfs, Fibro to muscle dystrophy to cardiac issues etc. This interview blew my mind

Just get pass the first few minutes when they have some technical issues, btw they don't talk much about hormones

http://www.blogtalkradio.com/hormones-spoken-here/2010/12/17/hormones-spoken-here

I was a patient of Dr Robson in 2010 and most of my CFS symptoms resolved. Very expensive and initially many adjustments. I would stay for 5 days with adjustments everyday. Six months later needed more adjustments. December 2014 went for adjustments I was not doing well had gone too long without adjustments it had been 15 months and it did not help. The entire year of 2015 I have been suffering and am now considering going back but not sure he can get me back.

 

[MoonFlower]

Hi all

Had to post again to reiterate what I have seen in Dr Amir's surgery, where my only interest is to help others
We could spend years doing double blind studies and gaining evidence but the evidence is there to see in his surgery in Putney and the many stories that I have heard

If I had a grain of doubt before, my daughter went a week longer than normal without seeing Dr Amir and the treatment went a little far, and guess what the symptoms came back after seven months, but a trip to Putney and adjustment of treatment has put it right again. The quack that others made reference to is the most knowledgeable and caring professional and for those or you suffering or if you have a loved one who is suffering you really don't need to, what I have seen has astounded me as a health professional.

Once again my only reason for posting this if this message gets to one person who benefits from it with this treatment it has been worth it

Hi,

So glad your daughter is doing so well, that's always wonderful to hear. I am currently undergoing what I think is a very similar treatment, so I'm really interested in what you have said and thought I'd reply. I have a severely underdeveloped and misaligned jaw and also noticed changes in my face around the onset of my symptoms twelve years ago.

I was just wondering, was your daughter worse initially or were the improvements immediate? Just trying to ascertain if my recent worsening of symptoms is due to my jaw reacting to being realigned. or something else like one my medications. I'd also be really interested to know how long the treatment lasted for, as two years is the estimate I've been given.

Would be grateful to hear from you, many thanks!

 

[Mari66]

Hi all

Been a long time since been on this site. My daughter has now graduated from uni, is driving and got a permanent job. I continue to see on our visits to Putney marvellous outcomes for all his patients and continue to try to influence the NHS. She is coming to the end of her treatment which will be overall two and a half years as one side of her jaw very severely displaced. Her facial features are back to normal and her strength is amazing compared to all her adolescent years. She is now very noisy also!

We have never had worsening of symptoms as when jaw placed correctly all symptoms immediately disappear. After about 5 weeks if we haven't gone for the treatment she will get slight symptoms now, we drive straight down and within 30 mins all resolved again and she walks out very strong! I fully appreciate this is very hard to believe, and sometimes I still get shocked myself but it is basic anatomy and physiology and the trigeminal nerve plays a huge part in this.

Wish you all the best and happy to answer any more questions

 

[Xisca]

Thanks, I have called a cranio-sacral therapist today, and he told me that YES he Works on this type of problem, and has already worked with dentists!
I do not know any more and will see him next week...

 

[Xisca]

I discovered this dentist thanks to your forum, and I might fit into the cases that this jaw correction could help…

I have an idea why he can think he has results for all people with CFS, or a lot, and why he could think that there is no fatigue but a jaw problem as a root cause: if I am interrested, it means that I can notice I do have a TMJ problem! So he sees people that feel they can get something from his treatment.

I can see a differrence though between testimonies and myself, I do not have so strong symtoms, thanks god, and they do not show up as suddenly as I have read. For me, it all comes little by little.

Now I try to explain why I feel I have this problem, and that it can be related to my health issues… 1st, I am not diagnosed with CFS, but they told me more about starting fibromyagia, 10 years ago. As they did not propose any solution, I decided I would find and cure myself, and well somehow I got better, really.

It is as a parallel that I was also dealing with some osteopathic issues, and bad teeth ONLY on my upper left jaw. I was told about an TMJ problem, and I also did atlas profilaxy, and that was really expensive for nothing, I think that they abuse… There was no change at all. I also knew about the realtionship with hips, and I have a sort of short leg. I did the Gesret method in osteopathy, and it was good, but they could never do anything for my atlas, because my muscles resisted. I appear to have persistant contrations that are hold by the sympathic system… I got very interrested by somatic experiencing from Peter levine, and so efficient that I did the whole course!

It is not enough, but maybe with a lot of things that are not enough, I will arrive at some solutions, well I mean more durable…

So, I have my body weight on my left foot, my 1st shock was jumping from too high and shock in my legs, I have all the trigger points active in the postural muscles of ankles. Then I have a shock in coccyx, twice at 5 and 15 years old. Then also a whiplash at 15 or 16. I always was eating on my left side. 1st decay at only 18 years old, up left of course. I had a mouth that was too small for all teeth too. When I shut my mouoth, and look in the mirror, it is obvious that I have to deviate to the left so that my lower teeth can fit behind the upper teeth. More over, when I write for exemple, I often have to put my tongue between my right teeth, and guess what, this corrects the jaw! BTW, computer use makes me have a pain in my neck.

I also had migraines, though not strong and with no visual signs, only nausea and pain I can deal with by going to bed (no way to give pain killer to my liver now that I know about the problem). This problem I nearly solved with somatic experiencing, and for the rest of it, I control it quite fast with the reduced breathing of Buteyko.

But I still have pain at the basis of my skull, and I know enough to say that it is about trapezius insertion and also sterno cleido mastoid, and I have the pain also behind the clavicula.

About the jaw muscles that were mentionned?

Yes. And the pain is not new. As a child I remember I nearly got into panic thinking I had tetanos, as I had painful jaw muscles and I had just picked my fingers with black locust spines! I laugh about it now each time I feel this pain, which I notice more of course when I press the muscle.

This dentist lives far away. I have asked him if he has taught about his way to fix the problem. I even cannot believe that no one else can do something, he cannot be the only one!