DrSclafani answers some questions

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

Postby 1eye » Wed Aug 18, 2010 10:54 am

fogdweller wrote:...with the reflux, you'd have endothelium weakening near the reflux but not everywhere else. Maybe when there are two stenoses, the slow flow contributes to weakening of the endothelium more overall?

...there is definitely some kind of inflamatory/immune reaction going on, and if you weaken the endothelium you let in inappropriate immune cells over the compromised blood brain barrier. Even if only one weakend spot, this seems to me to be problematic.


Foist of all, I don't understand as I haven't watched enough Gray's Anatomy.

How does reflux weaken the endothelium (or other Latin word to that effect)? Are we talking ballooning here?

Second how many veins drain the poetic brain? I have heard of internal jugulars, external jugulars, and vertebrals, as well as a lot of collaterals. I count 6.
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Postby Cece » Wed Aug 18, 2010 11:09 am

L wrote:An IR who performs two separate interventions, one for each jugular vein, was mentioned earlier in the thread. I just spoke to a spokesman for the privatescan clinic in Dusseldorf, it is Dr Beythian who does this (he works with Dr Kraus.) The rationale behind it is to avoid the unlikely event of both veins collapsing he said.

Interesting! There is a second doctor who does this, it's been discussed openly in his thread here, but I am not sure if we are naming names nor do I know if his rationale is the same.
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Re: CCSVI and blood brain barrier permeability-

Postby NHE » Wed Aug 18, 2010 1:37 pm

Hi 1eye,

1eye wrote:Foist of all, I don't understand as I haven't watched enough Gray's Anatomy.

How does reflux weaken the endothelium (or other Latin word to that effect)? Are we talking ballooning here?


I posted this information a few pages back...

http://www.thisisms.com/ftopicp-128100.html#128100
Simka's letter in a nutshell... Endothelial cells are the cells that line the blood vessels. In the brain, the endothelial cells make up the blood brain barrier. When blood flows past the endothelial cells, the cells experience shear stress. In response to this stress, the cells upregulate the proteins that make the connections between them stronger, i.e., the statement about tight junctions. Stronger tight junctions help the blood brain barrier limit what can pass between the endothelial cells from the blood to the brain, e.g., the white blood cells of the immune system. Simka's point appeared to be that with reduced blood flow seen in CCSVI in MS patients, the endothelial cells will not experience as much shear stress and will therefore have weaker tight junctions between them leading to increased permeability of the blood brain barrier and that this change in the blood brain barrier may be a contributing factor to the development of MS. In addition, Simka noted that low shear stress upregulates the protein, ICAM-1, that's used by leukocytes to cross the blood brain barrier. This is like a double edged sword against the blood brain barrier, i.e., not only is it more permeable but the adhesion molecules needed by the immune system cells to cross the blood brain barrier are more abundant (that's like opening all the windows in your house just a bit and then putting signs out for the burglars). Simka also proposed that he thought that surgical intervention was a good idea.


It seemed like a relevant response to Sneakycat's post which discussed Tysabri. In effect, if Dr. Simka's statement is correct, then CCSVI is a condition which increases the permeability of the blood brain barrier. An analogy would be that it's building more doors for the immune cells to cross into the brain. Tysabri would then be like a vandal that comes around and superglues all of the locks. It may be better to stop the installation of the doors in the first place rather than to address the increased permeability afterwards (note, that's just my own interpretation).

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Postby hope410 » Wed Aug 18, 2010 2:33 pm

Dr. Dake mentioned in his presentation at the MSketeers fundraiser that white blood cells are larger than red blood cells, so when the white blood cells get through the BBB, the red blood cells get through too, which also puts iron from the hemoglobin through the BBB (I hope I'm remembering this right).

If that's so, why aren't RBC's found in spinal fluid during spinal taps? Wouldn't they also be in the CSF if they've breached the BBB along with the white cells?
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Postby Zeureka » Wed Aug 18, 2010 2:37 pm

Cece wrote:
L wrote:An IR who performs two separate interventions, one for each jugular vein, was mentioned earlier in the thread. I just spoke to a spokesman for the privatescan clinic in Dusseldorf, it is Dr Beythian who does this (he works with Dr Kraus.) The rationale behind it is to avoid the unlikely event of both veins collapsing he said.

Interesting! There is a second doctor who does this, it's been discussed openly in his thread here, but I am not sure if we are naming names nor do I know if his rationale is the same.
I still do not understand the reasons. What would the doctors expect to happen differently if both jugulars would collapse (you mean restenose?), instead of only one if only one jugular is treated at the time?
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Postby elliberato » Wed Aug 18, 2010 3:54 pm

Have we really gotten any further since Zamboni's original discovery? Seems like there is a lot of learning to do and as well results of the procedures do not have us doing cartwheels. Literally. Is there not a chance that this entire vein malfomation could not be in vetro but rather an after effect of this monster that is attacking our insides?
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Postby Zeureka » Wed Aug 18, 2010 11:14 pm

elliberato wrote:Have we really gotten any further since Zamboni's original discovery? Seems like there is a lot of learning to do and as well results of the procedures do not have us doing cartwheels. Literally. Is there not a chance that this entire vein malfomation could not be in vetro but rather an after effect of this monster that is attacking our insides?
Hmm, rather unlikely - how could an auto-immune mechanism cause the malformation of a valve and we know most of the CCSVI issues are congenital...also I think for the discovery only getting to be known world-wide towards end 2009 (at least that's where I heard about it via Canada - even if there were congresses in Italy before...) and we are mid 2010, wow! We are already doing well!
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Postby LauraV » Thu Aug 19, 2010 7:14 am

You're right, Zeureka, we have come a long way but we still have a long way to go.

As Dr S has told us, we are all (especially the docs) on a steep learning curve. The details have to be worked out, like techniques and timing, where to enter, type of balloons, use of IVUS, etc. Doctors may learn that we need to get tested regularly or get regular venograms every 2 yrs or something like that. (much better than regular useless MRIs, don't you think)Maybe one venoplasty is enough for some of us. I'm sure this isn't a "once size fits all" treatment just as MS isn't the same for everyone.

Hopefully Doppler ultrasound will become a standard screening procedure like a colonoscopy or a mammogram....even if it's just for family members of pwMS.

Now if only the non-believers would get out of the way of Dr S and the other good docs who need to do procedures to learn all that is to be learned.....
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Postby CaptBoo » Thu Aug 19, 2010 1:03 pm

Dr. S

Thank you for being on this site. I hope my case may be of interest to you. I would like your opinion.

I am a 57 yo male. I have lived in the south or in the tropics all my life with plenty of outdoor physical activity. In 1988 I was involved in a boating accident and broke my neck (crushed C-5). I had fusion surgery putting C4 and C6 together with a piece from my hip. This surgery is done from the front of the neck and the surgeon has to pull open all the neck stuff to get his hands on the vertebrae. I recovered fully.

In 1993 I had a neurological episode where I lost sensation in various parts of my body. The original neuro-surgeon wanted to drain my spinal cord into my stomach. After about six months the neuro-deficits resolved, so I declined the surgery.

In 2008, at my regular physical with a GP, I complained that my balance was getting noticeably worse. He recommended an MRI. That MRI showed lesions, was reviewed by a neurologist who ordered a lumbar puncture, which showed O-bands. I was therefore diagnosed with RRMS. I was told to expect further deterioration and be in a wheelchair within 5 years. I was started on Copaxone. My left leg started twitching.

In 2009, I went to Mayo clinic for a second opinion. My left leg was showing signs of spasticity. That neuro confirmed MS, said it was secondary progressive, and switched me to Avonex. I quit the Avonex after 5 months because I would rather die than be that sick all the time. That neuro also said that he could clearly see lesions in my 1993 neck MRI.

Also a recent blood test shows that iron serum is well within range but my ferritin is well out-of-range (Mine is 429, normal is 12-282), which means that I am storing iron excessively. I have none of the symptoms of traditional iron overload disease, except for fatigue, and I tested negative for hereditary hemochromatosis. Excess iron storage in the brain makes sense to me and explains all of my symptoms.

It is my opinion, and I have spent thousands of hours researching MS, that I have CCSVI due either to the original neck trauma or the surgery on my neck. The CCSVI is causing excess iron storage in my brain and the MS-like symptoms. Nothing in traditional MS literature rings true to me for my case.
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Postby Donnchadh » Thu Aug 19, 2010 1:09 pm

By any chance could you take an MRV? It would be instructive to see if you have developed collateral veins around your injury sites.

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Postby CaptBoo » Thu Aug 19, 2010 1:20 pm

Donnchadh
That's what I'm thinking. I'm trying to get into Hubbard Foundation. I've met all their requirements, but now silence. When I first inquired Alexandra responded very quickly, but now that I've got the Dr's prescription and send the blood work results I've heard nothing.
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Postby shye » Fri Aug 20, 2010 5:43 am

CaptBoo-
Any chance you can donate blood, or get a prescription for phlebotomy?
This is a fast way to get iron out of your system, to prevent further brain and other organ storage. You want to get the ferritin level way below the mid norm. And one of benefits of phlebotomy is instant energy...
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Postby drsclafani » Fri Aug 20, 2010 5:49 am

Cece wrote:
Dr. Sclafani, will you be saying 'good-bye' (zai jien) before you head off to China? Or will we just at some point notice we are talking to ourselves? :)


Sorry to all. I have been deep in discussions about something I cannot discuss here.

i will try to answer as many questions as i can tonite but then i will be in a remote area of the adirondacks with no electricity, phones, running water or roads for the next week.

i will return and answer as many questions as i can before i leave for china on sept 2. I will try to answer your questions in china, but in english, although i will be giving a lecture in china on ccsvi and i am sure there will be questions from the audience in chinese. this should be fun.....but all i have to say is zamboni is always correct


and ps......you do not have to have MS to have symptoms of ccsvi and you dont have to have stenoses to have ms

remember, we are treating ccsvi by liberation
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Postby CaptBoo » Fri Aug 20, 2010 6:42 am

Shye,

I've tried to donate blood but have been turned down because of MS. I have not tried to get a script for phlebotomy. I am taking IV alpha lipoic acid which is a chelator and I am due for new blood test early September. If that has lowered the ferritin significantly then we're on to something, if not then I'll try for the phlebotomy script. Of course I am actively pursuing getting tested for CCSVI but the process is slow.

The IV ALA has helped tremendously with energy, but has done nothing for balance and left-leg spasticity.
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Postby Rokkit » Fri Aug 20, 2010 7:03 am

drsclafani wrote:and you dont have to have stenoses to have ms

I was wondering if by this you meant you don't have to have stenoses to have ccsvi (leading to ms), or if you simply meant you don't have to have ccsvi to have ms. Thanks!
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