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Important...a Procedure That Inadvertantly Treats Autonomic Dysfunction


sue1234
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First off, let me say that I've been studying alot over the last few years on Multiple Sclerosis and reading on the their forums, as a couple of my doctors say some of my symptoms sound like MS. My MRI scans do not show any lesions. I don't think I have MS, just plain ol' POTS.

Anyway, a little background on those that don't know the latest craze in MS treatment. In the last few years, a few doctors attributed MS to a backflow of venous blood in the brain. Due to this, they believe that is why iron gets deposited in places close to the veins/venules. They have tested and found that ALOT of people with MS have tortuous jugular and azygous veins. These doctors began experimental treatments, first by placing stents in the jugular(they rarely do that anymore), and now by just doing a ballooning of the veins. Sometimes the effects didn't last longer than a few months, so people would have a repeat procedure.

These patients would literally get their lives back. Some said as soon as the effects of anesthesia wore off, they noticed their cognitive abilities came back, along with their vision was brighter and clearer. Others commented on how their awful heat intolerance was GONE. Heat intolerance was the main reason I've been reading up on MS, as I knew they had that one symptom that is keeping me from doing alot of things even with POTS.

Anyway, a couple of weeks ago I was reading an article in the New York Times Magazine titled, The Zamboni Effect (Zamboni is the doctor that pioneered this theory and stent placement). Anyway, I was reading the article interested only because I had followed this stuff through the MS forum. Well, lo and behold, in the middle of the story I read this:

"This summer, after the F.D.A. warning came out, Arata e-mailed me with a change of view, attaching a paper he wrote and submitted to The American Venous Forum. He had “come to the conclusion that what we are treating is autonomic dysfunction,” he said. The paper included a list of symptoms of autonomic dysfunction that closely track many symptoms of M.S. It’s unusual for a doctor to reach a conclusion that a condition for which he already treated more than 1,000 people is not what he thought he was treating them for."

I like to fell out of my chair!! So I tried to find all I could on this doctor and any new theories regarding CCSVI treatment and autonomic symptoms. I don't know for sure, but I believe they are re-wording what symptoms get treated with CCSVI treatment because the FDA says that categorically CCSVI has not been shown to cause MS. This of course might be due to the fact that claiming CCSVI "causes" MS, and then the treatment is fairly simple, does not help all the pharmaceutical companies reap billions on drugs to treat MS.

Anyway, what can WE do with this information??? From what I found out, the FDA shut down all clinical trials on this, so no doctors are doing any of this through insurance. I did find out that some CCSVI doctors still do all this at the expense of the patient's own money.

If this procedure, based on 1000 of this Dr. Arata's patients, actually clears up the autonomic dysfunction, this sounds like something credible that we should all be tested for. But how? I don't have 10s of thousands of dollars to go get this investigated and treated on my own!

By the way, it is also know as "jugular dysautonomia".

The entire article can be read here:

http://www.nytimes.com/2012/10/28/magazine/a-controversial-cure-for-multiple-sclerosis.html?_r=1&pagewanted=all

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Sue, Unbelievable! I read the same article in the Sunday NYT's!

I even saved the article. I'm reading and reading, and it's all about M.S., (I'm not convinced it actually helped many M.S. patients, as most doctors also believe), but I do agree that if someone with M.S. wants to go through this invasive procedure, Godspeed.

Like you, I almost fell over when I read, "this is just treating autonomic dysfunction."

I wondered though if it really would help autonomic dysfunction. Surely the doctors at Vanderbilt and Dr. Grubb would know if it would and would be doing this procedure on many many patients if they believed it could help?

Amazing that we both read this same article, and picked up on it. It's a fairly long article.

Heat intolerance is also a huge factor in CFS and other illnesses, not just MS.

This procedure and M.S. reminds me of a 'phase' when people with CFS were going through very invasive procedures because they thought CFS was caused by Chiari malformation.

Notice how many symptoms of Chiari malformation also are also symtoms of dysautonomia and CFS!

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

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Yes, I understand what you are saying. People with CFS, Fibromyalgia, POTS, Mast cell disorder, etc. don't really know the "whys" of their symptoms, just that they have a label to attach to their symptoms. Something like Chiari is a physical abnormality that produces a set of symptoms. You fix the abnormality, and chances are you fix alot of symptoms. (nothing is absolute). I am looking for that something that can be fixed.

I have wondered with alot of people here with EDS and others without(me), but with neck/spine abnormalites like me, this could make sense. Both of these conditions have got to affect the neck in various ways.

As far as the POTS research places, it seems to me that they get hold of a theory or two of their own, and they spend years looking at it and rearranging it. I wish the researchers would think outside the box, sit back and look around for all possibilities that could come into play.

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I also began with a lot of MS symptoms, with no lesions, (baffling my neuro), so I began doing research and started taking supplements recommended for MS, and my vision improved almost immediately. I knew it was a circulatory issue. I came close to going to a neuro- opthamologist, but realized with the beta blocker, my blood pressure plummeted, and my body had to get adjusted, so that I could get enough blood to my brain. I also had to try a couple to get the right one, to decrease my tachycardia. I also have kyphosis of my upper spine, so I know this is a factor with the circulation to my brain. I take CoQ10, L-Carnitine, and Alpha Lipoic acid, Vitamin D and the B complex. My vitamin D levels have improved, and so did my energy and my appetite. I drink a lot of fluid, too!! I believe you can improve with just the supplements. I also take Calcium and Magnesium. See my list below. :) If you have Chiari malformation, then that's a whole other issue, and even possible surgery in that case, too.

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Inerteresting! I always feel like the veins (probably the jugulars) in my neck are so constricted and it gets worse in the heat and are at their worst when my POTS symptoms are at their worst. If they would do it and I could afford it, I would be a guinea pig for this one! When it is happening, I always think to myself that if we could just open up the veins in my neck, I would be fine. Maybe its true???

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Ever since my POTS began, I have always felt like I had a balloon blowing up in my head. This could explain that feeling. Of course, if it weren't bad jugulars, it could still be something like bad CSF flow due to my neck.

I have been planning on scheduling an appt. with a neurosurgeon to get his take on my cervical stenosis. I think while I'm there, I will bring this article and get his opinion. I ALSO need an opinion on my pituitary gland while I'm there, as 6 years ago a neurosurgeon thought he saw two areas that could be small pituitary tumors. He said keep an eye on my endocrine hormones, and this year they have just gone whacky.

So, due to the cervical stenosis and pit. issues, I'll probably get an MRI. That's why I'll bring up the CCSVI, so while I'm getting imaged, he can request a look at the jugulars. Of course, I need to do this quick, before my paid deductible runs out.

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Hey, you remember me posting a few weeks back about going to a new doctor/scientist that thinks he knows the reason for the blood flow issues to the head. Well, I had my first visit and am having testing from him. I'm not ready to post about his ideas just yet. But, Sue ---you're on the right track.

But . . . .one bad thing about this ---the stents with this procedure ----I was told only last about 18 months and then things go back to the way they were before. This doc thinks he has the reason figured out and knows what to do about it. And it doesn't require surgery.

I will for sure post --when I learn more. I have to wait for my test to come back.

Issie

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Me too, I've at times felt that I had a "flow problem".

That's because when I lean over the pressure in my head becomes quite painful. Not right away, but within like a 1/2 minute or so. I always thought it was blood flow that did it, but I'm much less sure now.

Still, I think that the key things to take away from this article are:

  • “The scientific value of this paper is zero
  • "many ... regard the theory as bunk"

Chiari malformation is a scary example along the same lines: it's a real disorder, but it's also a fake disorder promoted on internet forums by unscrupulous people, some of them patients unfortunately.

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I haven't read about this surgery in a while, when I left of it a little over a year ago I remember Canada approved testing of the procedure on the basis of preliminary evidence for MS efficacy.

It's an interesting theory, with some data to support it. I did read several studies documenting a higher than average incidence of CCSVI. However, nothing close to the extremely positive findings by Zamboni. Review studies from what I recall that excluded Zamboni's paper showed non statistically significant difference in MS and controls with respect to this phenomenon. Additionally the diagnostic criteria of CCSVI is not so clear.

One hopes that this or something like this would actually work, as MS is a terrible disease.

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Hey, you remember me posting a few weeks back about going to a new doctor/scientist that thinks he knows the reason for the blood flow issues to the head. Well, I had my first visit and am having testing from him. I'm not ready to post about his ideas just yet. But, Sue ---you're on the right track.

But . . . .one bad thing about this ---the stents with this procedure ----I was told only last about 18 months and then things go back to the way they were before. This doc thinks he has the reason figured out and knows what to do about it. And it doesn't require surgery.

I will for sure post --when I learn more. I have to wait for my test to come back.

Issie

Izzie:

This sounds like exciting news! I would love to know more when you are ready to share more details.

Pam

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  • 2 weeks later...

Hi everybody,

I was diagnosed with MS in 2009 at MAYO in Rochester. I have just come out of a painful dysautonomia flare up. I still have fatigue and symptoms but not nearly as bad as around Halloween. One thing that brought me great relief was my diet. I cut alcohol, caffeine and coffee, dairy, sugar, and gluten. This would seem hard but I was feeling so rotten I had no problem doing this. I ate lots of kale, spinach, artichokes, blueberry's, watermelon, along with chicken, steak, salmon, and tuna. I ate lots of salted fruit and drank 4 1.5 liters of smart water daily. After a week of this, I was relieved of great pain and able to function normally. I also read that synthroid (thyroid medicine) causes dysautonomia so I cut my dose in half, and a week later my symptoms were gone, so I don't know if it was the diet, cutting the meds, or both.

Anyway I am wondering: has anyone had the CCSVI procedure to relieve their dysautonomia/ POTS? I have learned that I really don't have clinical MS but actually POTS. It was always syncope/ presyncope that triggered sort of a nightmare spiral of autonomic dysfunction. Here is the video of Dr Michael Arata in Newport Beach explaining the surgery and the great relief it has brought to dysautonomia. If you are not familiar with the CCSVI procedure it was a medical breakthrough procedure discovered by Dr Zamboni in Italy 5 years ago. His wife had MS and he discovered that the jugular veins in the neck were not functioning properly. Since then it has been a hot topic amongst MS patients, please google and read about the great relief it has brought some, (not all) MS patients. Here is the link of Dr Arata explaining it, I would love to know what you guys think and if you have had it if it relieved your POTS:

http://www.youtube.com/watch?v=AlSBVuOQknA

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Hi MaidMarian, welcome to the forum!

Like you, I'm not sure what made you do better, just a little warning that cutting down on these kind of meds (or making changes in general) usually needs doctors supervision!

I hope this forum will help you find the answers your looking for!

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Hi MaidMarian, I have been reading a lot about this and I know there are several theories out there relating to diet and ccsvi and dysautonomia. my sister has ms and I really wish she would follow the mcdougall diet - I plan on trying it soon (just hate to give up the dairy!)

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This is very interesting...been reading about this also, like Angela. Diet is important, but supplements have even helped me even more. My vision has improved immensely, due to better circulation, I feel from my supplements, and probably my Cpap. This is my opinion, too...I'm not a doctor, but am interested in learning more about this...thanks, Kim

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My new geneticist that dx'ed my EDS last week is sending me for a CT angiogram with a radiologist at Hopkins that works with Chiari and is also apparently interested in this research. She said her jury is still out on it but its worth a look based on my symptoms. I often feel significant restriction in my neck and have significant swelling in my face face when I have migraines. She wants to rule Chiari or venous malformations in/out. I'll let you know if it comes to anything but its nice to know that there are docs out there up on the research.

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Maidmarian, after I read the New York Times article, I found this exact video on Dr. Arata with this presentation. This is what prompted me to write this thread. That video just seems to make sense.

Katybug, WOW, you have a great doctor! Let us know how it goes and what you find out. I wish I knew how to present this info so a doctor would test me.

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I just found this new article(Dec 2012). It is from the neuro dept. in Buffalo, NY. The last sentence is what is important:

"Future studies should investigate CCSVI in relation to cardiovascular autonomic function."

Does this open up the door for people like us to be checked for CCSVI????? I mean, if it is published in Pubmed, then doesn't that give credibility to having a doctor maybe order the testing AND have insurance pay for it???

BTW, here's a link to the article:

http://www.ncbi.nlm.nih.gov/pubmed/22564548

I am working on upping my vitamin D.

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So when my Lyme doc treated me for a little over a year, I was on the antibiotic cocktail that Wheldon was showing in the video. I felt so much better during that time. I had steady improvement over time with the antibiotics. Lyme is known to cross the blood brain barrier and is able to infect all types of cells causing significant inflammation. I am not dx'ed with MS but what if this theory and the theory of chronic Lyme existing is true? It would make so much sense in my case...very clear starting point for symptoms,, better with aggressive antibiotic tx, slow relapse into symptoms off the antibiotics. Holy Cannoli!! What if?

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