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

First posting....

Postby Donnchadh » Sat Jan 30, 2010 4:03 pm

Very curious to know if anyone has had experience with Medicare paying for CCSVI treatments?

What tests should I ask my neurologists to order to determine if I have CCSVI? I go to Froedtert Medical College in Milwaukee, Wisconsin.

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Postby Cece » Sat Jan 30, 2010 5:08 pm

I believe some of those treated by Dr. Dake at Stanford (who is now setting up a clinical trial and not actively treating patients) paid through Medicare.

Also: you need an MRV, using Dr. Haake's protocols. You can get this ordered through your GP if your neurologist shoots it down.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Donnchadh » Mon Feb 01, 2010 7:53 am

Is there information on a "MRV, using Dr. Haake's protocols"?

I did a search and it returned a staggering 556 replies, so I would appreciate it if there were some specific instructions. I am planning to approach my neurologists about testing for CCSVI, and need to have a definite request formulated.

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Haacke MRI Protocols

Postby Shayk » Mon Feb 01, 2010 9:32 am

Hi Donnchadh and welcome

Indeed Dr. Haacke's protocols are on his web site.

I see the site was updated today....sorry, don't know what's new.

Good luck

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Postby Donnchadh » Tue Feb 02, 2010 11:26 am

Thanks for the link...I copied his MS protocols to a CD to have something to show to my neurologist.

Funny, I have looked at my MRI's many times but never thought about searching for damage to anything other then the spinal cord.

At the injury site, it appears that there is indeed vein damage: it's fine below and above but at the injury site it looks terrible.

Question: if a vein is physically damaged by an injury, does the body try to make "replacement" bypass veins around that section?

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Postby Cece » Tue Feb 02, 2010 11:51 am

Yes...they show up as spaghetti-like corollary veins. If the jugulars were normal, corollaries wouldn't show up on a scan at all, they wouldn't be big enough.

If you get anywhere with this, I'd be interested personally. I'm over in MN but would travel to WI for treatment.

If your neurologist isn't interested, you can bring it up to your GP and try to get an MRV ordered that way...and then you need an interventional radiologist who doesn't decry this as junk science (bad experience earlier this week for me)!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Donnchadh » Tue Feb 02, 2010 12:27 pm

I am cross-posting this so people can understand my condition.

QUOTE:

While I don't doubt that some percentage of MS cases are indeed due to
congenital origins, perhaps others are due to accidental damage?

I believe that this is true of my own personal situation. I suffered a very bad fall back in 1990, sliding down the edge of a building (about 30 feet). I was holding onto a ladder, and the impact was so severe that my forehead bent the aluminum rung.

Prior to this accident, I was in great overall health and had absolutely NO neurological problems of any kind. I never had any infectious diseases (other had a rare case of the common cold); and my neurological conditions never changed as a result of being sick.

I broke a toe, damaged my left shoulder, and then that's when the problems started. By 11:00am every day, I would become so tired I couldn't keep my eyes open; I wasn't physically tired but rather "head" tired. I would sleep for about 2 hours and then be OK again. I would sleep overnight with no problems.

A dull pain in my neck, just below my skull, was constant. A pain located in the back of my skull lasted for weeks (my ex told me that a nickel-sized area became bald-the hair has since grown back along with the cessation of this pain).

There was some minor tingling in my hands; classic "pins and needles" symptom's.

After surgeries for my shoulder and foot, my neurological symptom's gradually diminished (over the course of about two years).

I had one MRI taken back in 1992 of my neck (which was kind of cutting edge back then) which shows some lesions on the spinal cord. However, the images are small (about 2 inches square) and very grainy so the lesions were overlooked. No one picked up on this damage.

Fast forward to today.

My symptom's have progressively worsened. The minor tingling in both hands develop into a severe case of bilateral carpal tunnel syndrome, and I have had release surgery on both hands. The surgeon said he never saw a worst case; describing the entrapped nerves as being "hourglassed" by the inflammation against the wrist ligaments.

My walking is effected; feels like I am partially "tightened-up" with the classic foot drag.

My looking over MRI's taken in the last couple of years, it would seem that around the neck injury site, there is some vein damage (appears smooth and round both below and above it).

My plan to is approach my neurologist to see if he will OK a CCSVI MRV tests to determine if there is in fact vein damage at the neck injury site.
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Postby Donnchadh » Tue Feb 02, 2010 12:46 pm

After spending hours reviewing my recent series of MRI's, I think that I do have serious vein damage adjacent to the C-5 neck injury site.

However, I am NOT a Doctor, so this represents just a guess on my part. The spinal cord is well visualized, along with the vertebrate bones. There appears to be a small, round vein running parallel to the neck bones. At the injury site, it changes into a jumbled mass (collateral growth?), then turns back to a normal structure above it.

I am guessing the reason why my symptoms seemed to fade away after the accident was due to the growth of these collateral veins, but years of accumulated iron deposits have taken their due.

Just by trial and error, I have found out what seems to help my condition.
Donating a pint of whole blood has an almost immediate effect in removing the over all exhaustion and fatigue I typically endured. I would have to nap nearly every day I was so tired. Now my thinking is much clearer after donating blood. And I notice that these symptions gradually return weeks after giving blood; I can only give blood on a 8 week cycle.

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Postby Donnchadh » Tue Feb 02, 2010 12:59 pm

Cece,

Yes, I will certainly keep everyone posted about my experiences with Froedtert, in Milwaukee Wis.

My experiences with them has always left me with the impression that they are a first class hospital and medical college.

The last time I saw their neurological department (about 2 years ago), the results were rather inconclusive. The problem diagnosing my case involves trying to figure out whether my symptoms were due to the 1990 injury or to being a classic case of MS.

Obviously, this last visit was long before learning of CCSVI. It really explains what is happening to me.

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Postby Donnchadh » Wed Feb 03, 2010 8:10 am

Received a return telephone call from the neurology department's nurse. They are not willing to schedule either a MRI or MRV test without a prior office visit. In the past, all their MS tests were either negative or within normal parameters. They then wanted to do a spinal tap, but I drew the line at that because I heard its rather painful.

Going to set up this visit, but the problem is going to be "steering" the exam toward determining if I have CCSVI versus having them starting traditional MS treatments (which is based on the auto-immune theory).

If this effort is unsuccessful, then my next step will be to approach my GP about getting the MRV authorized. What's in my favor is that I do have MRI's showing some questionable areas in the neck which might be indicative of vein damage.

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Postby shye » Wed Feb 03, 2010 8:37 am

Donnchadh-
several things-
you say that givng blood helped you --please see the phlebotomy thread--important to read and to post--more and more of us are finding problems (under of over) with iron--problem is probably in its regulation, but nevertheless phlebotomy is helping some.
How did you come to realize phlebotomy would help you?

Re: medicare paying You will need to have dr submit testing for a reason medicare accepts--I thnk something like severe headaches with no other cause found, etc--Dr should be able to pull up codes that will work--they will not accept using CCSVI as the reason. For insurance purposes, it has nothing to do with MS, has to stand on its own.
there are some threads tht mention this

Re: you injury---I had severe injury also that involved head and neck--just recently went to chiro (again!) with info re adjusting the atlas--and Voila, end of severe pain had lived with for years, and better thinking, nerve response, walking etc. link to explanation: http://www.youtube.com/watch?v=f9iLb1KqeXE
you don't need the orthogonal machine (expensive), your chiropractor can do this. If you want to explore this, and don't have a chiropractor, when you call to find chir,o make sure ask if the will do adjustment for rotated axis.

Also, you might want to check out the Inclined Bed Thread--i started sleeping this way 2 months ago, and helps amazingly.

Good luck
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Postby Donnchadh » Wed Feb 03, 2010 9:20 am

Actually I started donating blood years ago after researching diets; diabetes runs though my mother's side of the family and I wanted to avoid this if possible. Avoid simple carbs; eating more meat works for me but had to find a way to lower iron blood levels (didn't know about the iron-MS connection at the time.) Serendipity?

Yes, I think you are correct about Medicare billing. CCSVI is too new and not "officially accepted" yet to be a stand alone justification. That's why I am going to emphasis the neck injury/growth of collateral veins and not MS for reasons for examination and possible treatment.

If Froedtert insists on treating me with classic auto-immune drugs (which I have never taken), then I will pursue other doctors.

I have seen a chiropractor for years, and does help somewhat with the neck pains. I also use a cervical extender with good, if temporary, success. However, the chiropractor treatments have had no effect on the hand tingling/walking issues.

Just purchased an air bed (before I had even heard about MS/CCSVI) to deal with lower back pain and it has been nothing short of phenomenal.
I sleep much deeper now, and wake up with no back pains or muscle stiffness.

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Postby Donnchadh » Wed Feb 03, 2010 11:35 am

Well, I have an appointment tomorrow at 1:00 pm at Froedtert neurology department so will let people know how it went.

I have decided it would be best NOT to mention CCSVI because, in my experience, doctor's don't like to be "one-upped" by their patients. I intend to ask specific questions about the veins near my neck injury site, and see if he will OK a MRV test.

Donnchadh

PS: I did a Google search for IR and their websites seem to be far more widespread in the areas they treat, so I suspect they would be far more open to exploring a new therapy.
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Postby shye » Wed Feb 03, 2010 6:22 pm

Donchadh
Odd, i got an airbed also, helped, but is even more helpful using it Inclined.

Re:chiropractor--i had to try a number of chiros before I got one who really understood the body, and who finally fixed my rotated atlas (as well as doing adjustments to rest of body). I stiil see her for periodic adjustments, but it was the work she did on the atlas that made all the difference --the other chiros did "crack" my neck, but apparently not quite the correct way to get to the core of the atlas problem.

good luck with your neuro appt.

There are a number of threads here re the Interventional Radiologists--with lists, etc.
if you do some searches here, you will find a lot of answers.
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Postby Donnchadh » Tue Feb 09, 2010 9:38 am

Here's the result of my office visit to Froedtert's neurology department.

It is a part of their medical college, so my initial exam was done by an intern Doctor. It was a typical, wide-ranging exam for MS symptoms. Very comprehensive, and what I like about Froedtert you have someone willing to listen and take the time to make an more rounded diagnosis.
Next, the staff neurologist Asst. Professor reviewed her results, asked additional questions, and gave his opinion.

This process took over a hour and a half; very much different from the typical suburban MD's 15 minute visit (and where only listen to you during the first few minutes).

I asked about the questionable areas on my cervical MRI, but I had completely misidentified the structure. It was not a vein. This misreading was my concern all along because I am neither a doctor or radiologist.

The prof's diagnosis is that I have primary progressive MS, mostly because I do not have a history of episodes/relapses and do not have vision problems. (Actually, my vision was better then average being 20/25).

The results of my neck injury back in 1990 were clearly visible in the MRI
(bony growths on C-5, swollen cervical pads. etc.). However they felt that the current MS symptoms were completely separate from the injury and was caused by an autoimmune response. Classic standard explanation. I didn't feel like I had an opportunity to pose a question on CCSVI so didn't.

I can't help but feel that my head/neck injury back in 1990 caused some vein damage as well (as I feel much better-no fatigue- after donating whole blood).
The doctors had a hard time accepting the fact that prior to my accident, I had absolutely no neurological symptoms or problems of any kind. I was 42 years old at the time of the accident. They postulated that I "must have had lesions developing" that I hadn't been aware of and that the injury was unrelated.

My walking is getting worse; very spastic with foot dragging. He prescribed BACLOFEN 10 mg tabs. The literature included with the pills states that it is a muscle relaxant used to treat muscle spasms associated with MS or spinal cord injuries.

I haven't taken it yet because I came down with a cold, and just am getting over it. Drinking gallons of home-made colloidal silver water plus aspirin.

Anyone use BACLOFEN?

I plan on giving is a try to see if it helps. The prof gave me his email address, so I think that it will give me a better method of presenting CCSVI to him, and ask if he will OK a MRV test. I am also starting to search down interventional radiologist's here in Illinois to see if anyone is interested in CCSVI. It sucks to be on the cutting edge, but I am not giving up.

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