Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

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

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Thu Nov 03, 2011 6:30 pm

DrDiana can be found managing her forum at prettyill.com. This is the CCSVI subforum:
http://prettyill.com/forums/viewforum/8/
but there are other subforums as well.
Having perused there just now, it reminds me I need to look up mast cell granulation and what it means to be on mast cell protocol and why she would think we need this before/during/after CCSVI treatment. It's mast cell mediators that change our collagen from type 1 to type 3, according to Dr. Diana.

I share in the appreciation for Marie's posts here and over on CCSVI in MS Facebook. :)
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby mrhodes40 » Fri Nov 04, 2011 8:25 am

Cece said "If the reconstructed jugular was the size of my right jugular, that might work all right on its own."

This is a real area where CCSVI doctors are challenging the status quo and really trying to find answers re: what is really necessary.

Traditionally it was thought that since the cerebral venous system all converges in one confluence (all the veins in the brain go to one place and both jugulars come from there, one left one right) one jugular was plenty for anyone and in cases of trauma or cancer they could fix one side and call it good. The right jug is usually bigger than the left because of the way the veins are set up (the biggest brain vein the superior sagittal is a straight shot through that confluence to the right).

The Hubbards and Dr Haacke are leaning toward the idea that it is the amount of flow through the brain that matters--ie the amount of blood that MS patients move though their jugulars is small compared to normals ie a person with MS might move 2-3 ml/sec though whereas a normal person is in excess of 12ml/sec based on their studies. They are leaning toward an idea that it is primarily about the congestion. If this is the correct understanding of how CCSVI may cause issues for brain tissue then one jug might be enough if it can drain a large enough volume.

Then there's Dr Zamboni who is not as worried about the volume going through because for him it is about evaluating with the doppler for reflux to hone in on the intraluminal defect--correct it--then confirm with post treatment dopplers he did clear the problem that was slowing down the cerebrospinal system. Of course congestion is an issue here as well but at this time his primary method for determining healthy flow is reflux. There is precedent for this because in the legs and venous insufficiency it is known that reflux causes highly local increased pressure right where that swirling chaotic flow i--regardless of overall congestion.

Who's right? Is it both? It'll take many studies before all of this is proven and the wrong hypotheses drop away, rejected by science.

thanks Mr Success, I appreciate your vote of confidence. I wrote a book about CCSVI published by McFarland's reference division (ccsvibook.com) and have been busy with things related to that. being an author is not as easy as it looks... :roll:
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Fri Nov 04, 2011 9:17 am

mrhodes40 wrote:Then there's Dr Zamboni who is not as worried about the volume going through because for him it is about evaluating with the doppler for reflux to hone in on the intraluminal defect--correct it--then confirm with post treatment dopplers he did clear the problem that was slowing down the cerebrospinal system. Of course congestion is an issue here as well but at this time his primary method for determining healthy flow is reflux. There is precedent for this because in the legs and venous insufficiency it is known that reflux causes highly local increased pressure right where that swirling chaotic flow i--regardless of overall congestion.

This also fits with what Dr. Tucker has been saying about focal points of pressure.

The talk from Dr. Diana that I read through last night dealt with CCSVI as a matter of congestion.

If degree of congestion and degree of reflux are different in different people, and if they have separate effects, it might help explain some of the different presentations of MS.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby mrhodes40 » Fri Nov 04, 2011 10:27 am

yes absolutely; Tucker's stuff is awesome and adds to the theoretical basis for the CCSVI hypothesis--with time things will be made clear, but it will take dedicated researchers and time to really solve it.

congestion vs reflux may be a moot point, if the real problem is an intraluminal defect like a web or a septum leftover from embryologic development (as it is in Budd Chiari and as histology CCSVI studies so far seem to show) then repair will correct both IF---IF repair is done correctly and completely and the aberrant tissue does not recur.

but I can imagine a situation in which the veins have been dilated to the point of "adequate blood flow"--ie 12ml/sec-- but there is still reflux because the little web is still in there and the blood still swirls past and around it--maybe just faster now the vein is dilated!

the only way to know is to treat people and see if their MS is better. I have reflux and a blocked stent but fabulous volume at 12ml/sec racing through the other stent that is working great. I would say I am progressing though very slowly. OTOH--a neuro would say well of course you are because you are SPMS--it's all that leftover inflammation from former MS attacks.

That is what MS does. It progresses.

My neuro and I talked and we re-affirmed there is nothing to do but manage the SP slide at this point. He doesn't blame me for trying anything new because he knows where this is going (even thuogh he believes CCSVI is nonsense).
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby MrSuccess » Fri Nov 04, 2011 10:43 am

Marie ... stick around . Much can be learned from you and Cece , as you bat the ball back and forth ...... but can you two brainiacs please " dumb it down " once in a while ? :razz:

Reading you two ..... has me thinking I'm " thick". :wink:



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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby erinc14 » Sat Nov 05, 2011 8:22 am

"That is what MS does. It progresses. "

so there really is no hope if you've been hit hard ?
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sat Nov 05, 2011 2:18 pm

My neuro and I talked and we re-affirmed there is nothing to do but manage the SP slide at this point. He doesn't blame me for trying anything new because he knows where this is going (even thuogh he believes CCSVI is nonsense).

I know a great book he could read....

congestion vs reflux may be a moot point, if the real problem is an intraluminal defect like a web or a septum leftover from embryologic development (as it is in Budd Chiari and as histology CCSVI studies so far seem to show) then repair will correct both IF---IF repair is done correctly and completely and the aberrant tissue does not recur.

I had severe blockages, which may mean I suffered from greater congestion than average, and my immediate improvements seem related to that (vision, color saturation, fatigue, cogfog, etc). It might be that the immediate improvements are from the relief of congestion, while the relief of reflux contributes to the health of the blood brain barrier which might slow down further progression.

There are people who feel no different after CCSVI procedure than they felt before. I wonder if they had lower-grade blockages, so that there was not the same degree of congestion to be relieved? But even without feeling different, if the reflux has been improved, it should improve their situation and reduce the strain on the blood-brain barrier from the focal points of hypertension due to reflux.

For those who have been hit hard, maybe combined therapy (CCSVI treatment and stem cells; or whatever remyelination drugs might be on the horizon) will work. MS progresses but so does science. That's where the hope is, I think.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby bethanyschro » Sun Nov 06, 2011 9:36 am

Hello! I had a veinoplasty done 11/2010, have since occluded, and have additional webbing in my Left Jug. I am very interested in Mike's progression.
There seems to be two options at this point. Either his body will "attack" his new vein and occlude it, or that old jug that was replaced was faulty and by removing it, he will remain open. Time will tell.
And has anyone brought up cadaver jugs? That way we don't have to compromise our lower extremity circulation! I am new to the blogging arena, so any feedback would be nice!
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sun Nov 06, 2011 9:53 am

I just checked for any new updates from Mike, and he had one on Halloween. I also notice that in the comments on his previous post, there is someone who says they've seen Dr. Stone and are getting labs and CT scan done, so it seems to me that Dr. Stone is not stopping with just one jugular vein reconstruction.

Bethany, welcome, I haven't heard much about cadaver jugs. It's an interesting thought. The options that I know of are saphenous vein taken from the leg or PTFE (teflon) artificial tube. Doctors have also actually taken the jugular vein out and used it as a graft for other parts of the body!! Really a bad idea, I think.

Did you ever have an attempt made to get through the occlusion?
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Sun Nov 06, 2011 10:01 am

I have been in contact with a woman since reading Mike's blog has seen Dr Stone.
This is what she wrote to me.

"I had my apptmt with the Mayo MS doc that Dr. Stone wanted me to consult with. MS Doc is NOT against the surgery, says I have an unusual condition. C.T.s showed that my left IJV is totally blocked"
"Dr. Stone is friendly enough, but difficult to convince how important his surgery is for many of us."
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sun Nov 06, 2011 11:01 am

Dania, this is a woman who has exhausted all possibility of treatment or retreatment through angioplasty?
I wonder how many contacts Dr. Stone is getting about this.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Sun Nov 06, 2011 11:17 am

Here is what she told me.
"My 1st was done thru Hubbard in Sept 2010 by Dr. Donald Ponec. This doc will NOT touch me anymore, as my left IJV is occluded or blocked. Dr. Arata did my 2nd, tried to open my left IJV from the bottom up, but No Success. He then told me to come back 2 months later so he could try opening my left IJV from the top down, but No Success.
Surprisingly, he (Dr Stone) has Not been bombarded by people wanting Mike's type of surgery." I

I think everyone would try angio first as this is major surgery. Those of us whose veins are occluded this is, at the moment, our only hope.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby SammyJo » Mon Nov 07, 2011 4:37 pm

To add to Marie's post on vein replacement options, here is something new that Danielle found in Popular Mechanics. Growing in the lab means they don't have to take a donor vein from elsewhere in the body.

Lab-Created Blood Vessels, Ready-Made for Any Patient
http://www.popularmechanics.com/science ... c=soc_fcbk
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Fri Nov 11, 2011 9:24 am

Got some bad new from Dr Arata who was kind enough to contact Dr Stone (vascular surgeon) at the Mayo in Phoenix who has successfully performed a vein transplant just to see if I was a candidate for this surgery. All 3 of my veins are blocked. Unfortunately this cannot be done on me as they need 2 cm of normal vein on which they attach the transplanted vein to, which I do not have. I have now run out of options.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Fri Nov 11, 2011 9:32 am

I am really sorry to hear that, dania.
There might yet be options that the doctors haven't even thought of yet, or pharmaceutical options.
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