Chiari Malformation--Dr. Fraser Henderson

This is a neurosurgeon who specializes in Chiari, a malformation where the brain stem extends too far down. It causes many symptoms common to ME, and some of us probably have this. He also talks about the combination of hypermobility (Ehlers-Danlos type 3) syndrome and chiari malformation.

Good info on the Ehlers-Danlos aspect too.

Scroll in a few minutes past the into by the politician.

YouTube in several parts: http://www.youtube.com/watch?v=8FRSyJcTAd0&NR=1

Sushi

Maybe add Ehlers-Danlos to your title as i know a few people here would be interested in that one.

cheers!!!

Chiari Syndrome - 10x More Prevalent than MS

Hi Sushi,

Thanks much for posting this. I looked into this fairly extensively several years ago, realizing how closely symptoms of Chiari Syndrome mimicked those of CFS/FM. I came to a dead end when I couldnt find a local place to do an MRI without them requiring they do their own MRI analysis. I couldnt go along with this, because my research told me that not only are most doctors unaware of Chiari and how to detect obvious symptoms, but typical MRI analysis often misses obvious Chiari malformation. I was also a bit hesitant to follow up because I had heard Chiari Syndrome is quite rare, and the corrective surgery fairly dangerous.

But I did watch the videos you posted here, and was surprised to learn that Chiari is actually quite common, with one out of a hundred having it. This compares to one out of a thousand people who have multiple sclerosis; ten times more prevalent than MS. I was also pleasantly surprised to hear that surgical techniques have greatly improved, and that it isnt nearly so dangerous as it may have been in years past. I did a google search and ran across a Chiari support group. There were volunteers who have their telephone numbers available, and I've since left a couple messages to try to find out more information. Here's a link along with their mission statement:

To advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.

I agree with you that many on this board are probably dealing with Chiari Syndrome. Many report the start of their ME and/or FM after being in a car accident and/or experiencing other trauma such as whiplash or head injury. I believe there are also posts on this board that refer to various types of cranial nerve damage/trauma being highly implicated in ME. I suspect some of the infectious elements responsible for ME probably effect the cranial nerves in other ways, such as Lyme bacteria which has an affinity for the nervous system, and creates Bells Palsey, swallowing difficulties, and other symptoms associated with cranial nerve involvement.

Anyway, thanks for posting this. It was a positive catalyst for me as Ive been despairing today over how much longer I can maintain a sense of balance with a body that is so out of balance. This gave me a new focus, and have found it to be a good way to get a little active again, and pursue another avenue that may just pay dividends. Ive heard of others with ME and/or MF achieving much relief from having their own Chiari Syndrome properly diagnosed and addressed.

Best Regards, Wayne

I was interested in the Ehlers-Danlos aspect too as I know I have that. Problem with thread titles is that only a few words show until you open them! Maybe better to get the EDs in the title instead of the doc's name though. I have probably left it too long to change the title, but I'll check it.

And Wayne, yes, a new avenue to look into. I had known in the past that chiari surgery was not often successful, so never sought the right type of MRI to check for it. It is good to know that they are having more success now. Let us know any more that you find.

Best,
Sushi

Thank you Sushi. The symptoms he lists really resonate with me except for the headaches. He goes on to say that chiari is basically a disorder of the brain stem. Someone who is studying the brain stem is Dr Woody McGinnis in the context of autism and toxicants. His model might be worth looking at too.

Hi, for anyone who is contemplating surgery for this, please talk to a few post-surgery patients first. I have talked to one, and its scary. Yes, the operation can usually help, but she was in fear for her life all day, every day. She is missing a part of her skull over her brain stem. One little bump could kill her. She is too afraid to even go to a hairdresser. It is not something that is to be taken lightly. Bye, Alex

CHiari EDS

Another Video with DR henderson
http://vimeo.com/29142664


Sand

Thanks - it does seem that connective tissue disorder, and their related problems, are likely to be significant for a lot of people with CFS/FMS.

I don't really understand this stuff that well, but it seems (somewhat) hopeful for those with these problems.

Also - it's weird how so many of these connective tissue disorder have symptoms which are exactly the same as what certain psychologists claim is somatisation. For myself, I'm not sure if I have enough symptoms of somatisation to have a connective tissue disorder!

Wow. This really does describe a lot of us. If it truly is affecting 1/100 people is has been extremely undiagnosed in the past. Check out this website, especially the page on symptoms: http://chiarione.org/

What is disturbing is that like ME/CFS there is controversy about how to read the MRI and diagnose this illness. I had an MRI done a few years ago but now wonder if I should have it looked at again or have a new MRI.

I've only watched the first part of the video but I think my dad may have had Syringomyelia because he was told there was a enlarged area on his spinal cord and they wanted to drain off some cerabral spinal fluid. My dad was horrified at thought of it and said no. However he no longer has any symptoms at all due to being on Freddd's protocol.

I looked into CM about 4 years ago, excited that it could be my answer, but the MRI results came back negative. If there's a specialist I could send the results to for a second opinion then I just might consider it...so complicated, these things.

However I have found an answer that appears to address the issue - or a similar issue - without surgery, and that is cranial osteopathy. My osteo reports that the base of my skull is compacted inward, putting pressure on the vagus nerve, brain stem, eustachian tubes, etc. She is doing manipulative work on the bone structure to open the area back up. After just two visits I can feel my ears finally beginning to drain properly (past 5 1/2 years of fluid behind the ears, abx did nothing, constant ear infections as a kid, tubes in ears) and there is much less pressure in my head. The relief felt from this method has thus far been beyond what I could have hoped was possible.

As I have significant issues with the vagus nerve (IBS so extreme it requires an ambulance) I'm hopeful that by relieving the pressure on it I can get some resolution there. And if the brain stem is no longer squished that'd be nice too. :Retro tongue: I'm looking forward to seeing how much improvement can be gained.

I don't know if I technically have CM or not; it's been a while since I researched it as thoroughly as I did a few years ago and brainfog is getting the better of me. But if there's a possibility of non-surgical healing then it sounds worth looking into. A quick search showed up this prohealth article.

Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

I think Dainty raises a very important point; that there may be much less invasive techniques that can be employed to at least somewhat address whatever kinds of brain stem issues a person may be dealing with. I was able to release pressure on my cranial nerves using another modality. I wrote about the procedure and some of my improvements on a thread entitled:

"A brain MRI Study of CFS: Evidence of brainstem dysfunction & altered homeostasis"

My post is entitled:

Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

Best, Wayne

Hi Wayne,
I have been meaning to ask you if you feel the improvements you made after your atlas profilax treatment are still holding now, a few years later ?

I have become interested in this procedure after reading your posts. Fortunately, there is a practitioner within an hour or so from me here in Canada

Regards,
GP

Hi GP,

In short, yes, the improvement are still holding. I believe my atlas was significantly impacted by a serious head injury/whiplash I experienced as a teenager. This in turn severely crimped my cranial nerves as a result. The atlas profilax is usually a one-time "repositioning", and mine has held since I had it done four years ago (I've had it re-checked at least 2-3 times at no charge).

I believe my cranial nerves continue to be impacted to a certain degree however by the Lyme bacteria in my body, which has an affinity toward the brain and neurological system. So some of the improvements I experienced as a result of releasing the pressure on my cranial nerves continue to somewhat vascillate. But the improvements I listed in a post back at that time essentially continue to hold.

I sometimes shudder to think of how much worse I might be had I not had this procedure done. It felt at that time a lot of pressure was released from my head; almost as if it had been let loose from a vice grip. Doing the AP was one of the best things I ever did for myself. I sometimes wonder if I would have ever descended into ME if this procedure was available to me back when I first had my injury.

I wish you the best if you decide to go through with this. It appears my degree of improvement was in about the top 5-10% of all people who get this done. But I've have some healthy friends who had this done and report it turned out to be very significant for them as well.

Best, Wayne