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 dania » Fri Nov 11, 2011 9:41 am

Thanks Cece. I do not think I can wait much longer. I am in so much pain from my muscles remaining contracted, plus I am declining at such a rapid rate that one sees a difference each week. I am disappearing, piece by piece. I know what is in store for me and I will not exist that way.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Sat Nov 12, 2011 3:51 pm

dania wrote: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."

This woman is not a candidate for this type of surgery for the same reason I am not a candidate.
.
"I guess I'm in the same boat as you. Dr. Stone told me IN PERSON Friday that my left IJV is occluded up into my Brain and he cannot do any by-pass surgery for me."
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby bethanyschro » Sat Nov 12, 2011 8:25 pm

"Did you ever have an attempt made to get through the occlusion?"
I suppose I posted that incorrectly. I am not fully occluded. The doc had much difficulty ballooning my left jug, something like around 85% occluded, but was finally successful in ballooning it open. It has now occluded again with webbing, who knows how much since it was just seen on ultrasound. My right jug and azygos were ballooned, but not as severe occlusions as the left. I live in Phoenix and would be interested in a procedure with Dr Stone, but I am not interested in compromising my circulation in my leg, and would be interested in some other vein (cadaver/artificial, etc). I also can't imagine how much I would have to pay out of pocket for such a procedure. My two insurances rejected the angioplasty. Does anyone have an idea of how much it would cost out of pocket? Thanks!
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Sat Nov 12, 2011 8:50 pm

I tried 3 times to get thru the occlusion. Once with Dr Siskin and twice with Dr Arata. This woman tried twice with Dr Arata also. ALL attempts were unsuccessful with both of us.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Fri Nov 18, 2011 8:25 am

Mike has been making youtube vids of his progress.
http://www.youtube.com/user/msmikejuices
Latest update is from 11/7 and has him doing 180 degree jumping turns.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby drbart » Sun Nov 20, 2011 12:34 pm

dania wrote:
dania wrote: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."

This woman is not a candidate for this type of surgery for the same reason I am not a candidate.
.
"I guess I'm in the same boat as you. Dr. Stone told me IN PERSON Friday that my left IJV is occluded up into my Brain and he cannot do any by-pass surgery for me."


What about the Baylis RF canalization procedure as done by (for example) McGuckin?
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Sun Nov 20, 2011 1:43 pm

drbart wrote:
dania wrote:
dania wrote: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."

This woman is not a candidate for this type of surgery for the same reason I am not a candidate.
.
"I guess I'm in the same boat as you. Dr. Stone told me IN PERSON Friday that my left IJV is occluded up into my Brain and he cannot do any by-pass surgery for me."


What about the Baylis RF canalization procedure as done by (for example) McGuckin?

No. In my case I do not have 2 cm of normal vein which is needed to attach transplant vein.
And with the other person her stenosis is in her head. So it is not accessible for a transplant surgery.
Both of us are looking into a neurosurgeon.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sun Nov 20, 2011 3:52 pm

dania, with the other woman, was that stenosis a complication after a CCSVI treatment?
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Sun Nov 20, 2011 5:34 pm

Cece wrote:dania, with the other woman, was that stenosis a complication after a CCSVI treatment?

This is what she wrote to 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."
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sun Nov 20, 2011 8:54 pm

Maybe by in her head, she means all the way to the top of the jugular. It's even worse to think of a clotted jugular that extends further up into dural sinus clotting.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Mon Nov 21, 2011 10:51 am

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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sat Feb 11, 2012 9:48 am

Here's another story of a patient who received surgical jugular vein reconstruction:

http://ccsvi-ms.ning.com/profiles/blogs ... this-is-me
With these findings, I suggested to the patient to perform a surgical jugular angioplasty by using a vein patch to widen the vein. This treatment named “Jugular Surgical Angioplasty” also known as the “JSA Procedure”, providing a more optimum cerebral venous drainage. The patient accepted. The JSA procedure was performed two days later with excellent results and getting an excellent flow and patency of both vessels.

Remarkably, all the symptomatology that the patient had was almost entirely disappeared in the next 48 hours after the surgical Jugular angioplasty procedure. The most remarkable of these outcomes, is the disappearance of both urinary and fecal incontinences
I don't quite understand what is meant by 'vein patch' and that it is still an angioplasty procedure? But a patch certainly sounds like a surgical intervention.

Mike's procedure was done at the Mayo in the US, and this one was done in Mexico.

Credit to mtf who posted this in Dr. Sclafani's thread.

Here's Diedre's youtube video discussing the procedure: http://www.youtube.com/watch?v=ELfk9y2kQfc

I hope that both Diedre and Mike with update the CCSVI community with their follow-ups over time. These more surgical procedures seem to have been successful in the short time and I want to hear that they are successful in the long term.

ok here is a youtube showing what is meant by Dr. Hernandez by a Jugular Surgical Angioplasty. This video is not for the squeamish. I would not call this an angioplasty, which is a minimally invasive procedure. It is clearly a surgery. http://www.youtube.com/watch?v=bUivcngQvds
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Tue Feb 14, 2012 1:52 am

here is a comment from that patient.
"I was this person. I will be posting further reports in the next few days I feel great and no it wasn't intrusive I was back to work after returning home within a few days. If I ever need more treatments I will definitely be going back to the top most prestigious cardiovascular hopital in all of Baja Mexico and NW Mexico. Not only did this procedure give me my life back but also my family. For now we are no longer burdened with the symptoms of MS>my youngest isn't quite so excited as I now have the energy to say no or lets all go!"
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby vivavie » Thu Feb 16, 2012 9:58 am

I am not on TIM very often anymore so maybe I missed it but anybody knows the cost of the vein reconstruction in USA??

I will not jump on it as quickly as I did with angio, 1st I don't have anymore $ and not enough energy! I will wait for fine tune of the procedure although I know I can not wait too long. I learned with the angio procedure advancement was pretty quick. I am just starting to research the subject.
Thank you
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Thu Feb 16, 2012 10:25 am

vivavie wrote:I am not on TIM very often anymore so maybe I missed it but anybody knows the cost of the vein reconstruction in USA??

I will not jump on it as quickly as I did with angio, 1st I don't have anymore $ and not enough energy! I will wait for fine tune of the procedure although I know I can not wait too long. I learned with the angio procedure advancement was pretty quick. I am just starting to research the subject.
Thank you

I am having a vein by pass on my right jugular and a vein by pass on my left jugular. I am going to the Tijuana hospital and Dr Hernandaz, cardiothorassic surgeon will be doing the surgeries on separate dates, 3 months apart. The cost in the US very high, and in Tijuana is affordable.The price there is about the same for angioplasty in the US. I have been in touch with a Canadian woman who had it done there and she actually went jogging with her daughter the other night. She said it was minimally invasive and was back to work before the date the doctor recommended.
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