MY J0URNEY INTO CCSVI

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

MY J0URNEY INTO CCSVI

Postby dania » Sun Mar 11, 2012 6:39 am

My journey to be treated for CCSVI the moment CTV 's W5 aired Avis Favaro's interview with Dr Zamboni in November 2009. In June 2010 I traveled to Bulgaria had angioplasty. Got wonderful improvements for 10 days. I returned to Bulgaria 3 weeks later and they found I had restenosed but the stenosis was worse than before angioplasty. I had also developed a blood clot in my stent. The doctor removed the clot and angioplastied all 3 veins again. This time with very little improvements that again disappeared weeks later. I went to Albany New York in October 2010 and Dr Siskin tried to get into my veins but now they were blocked. Nothing he could do. He told me every time the catheter is run in the vein it does a little damage creating scarring or intimal hyperplasia. In January 2011 I went to Costa Mesa, California and Dr Arata tried, twice to get into my veins but he had the same problem as Dr Siskin. He said I had developed scarring. Nothing he could do. He said I needed a vein bypass.
I returned home and now that all 3 veins were blocked and having zero blood flow I was becoming more disabled at an alarming rate. I could see every week I was getting weaker and weaker. With every symptom worsening.
In February 2012 I found a cardiothorassic/vascular surgeon who said he could help me. On February 29 this wonderful doctor performed a Bi-lateral Jugular Vein Bypass on me. Major surgery, 5 hours. It gave me my life back. I am improving every day little by little. But for me the difference is huge. Angioplasty killed my veins. The surgeon said my veins had shriveled up, becoming fibrous strings. Completely dead.
This last experience has changed my thinking on how MS patients should be treated. I believe and so does this doctor, that angioplasty is a temporary solution to fixing this blood flow problem. Plus few people keep their improvements much longer than 18 months. And many that have had angioplasty have developed a 100% occluded vein and some have even had a jugular vein disappear. I fear if angioplasty is made available in Canada more problems will arise for the patients. BLOOD FLOW IS CRITICAL. That is for sure. But how do we treat it? Let experts in blow flow problems treat blood flow problems. Let's not waste any money on a procedure that does not last and has "THE POTENTIAL" of making patients more disabled. Let us fix the problem with one treatment. If you think I am a rare case, not so.
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Re: MY J0URNEY INTO CCSVI

Postby Billmeik » Sun Mar 11, 2012 8:39 am

hm interesting. It makes me want to get checked to make sure Im still open.My ms is better but not that much better.
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Re: MY J0URNEY INTO CCSVI

Postby Cece » Sun Mar 11, 2012 9:08 am

Jugular vein patching or grafting will also have the potential to leave patients more disabled. It all depends on if the graft lasts or not. Dr. Hernandez has only started treating CCSVI within the last few weeks or months, so he does not yet have the data to advertise this as a superior or equal method to angioplasty. I am watching this closely and with much hope, but it is too soon to know. Angioplasty is a much less invasive method. There are also ways of improving angioplasty so that complications are fewer. Anticoagulants, patient selection... The use of IVUS lowered Dr. Sclafani's complications rate from 16% to 1.3%. That seems acceptably low, but more research is as always needed. http://www.ccsvicare.org/outreach_update03.html
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Re: MY J0URNEY INTO CCSVI

Postby dania » Sun Mar 11, 2012 9:19 am

Cece, Dr Hernandez has done this surgery many, many times but not on MS patients. I was the first MS patient.
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Re: MY J0URNEY INTO CCSVI

Postby 1eye » Sun Mar 11, 2012 10:26 am

My brother was born with hydrocephalus. As a newborn in 1964 he had a shunt put in his jugular which took the pressure off his brain where the spinal fluid was pressing on it. This was made of plastic. It remained in his jugular for many years. He is now in his late forties. It may be that some form of plastic stent will allow blood flow through the jugular or other vein without damaging the vein wall. Certainly oxygen will not get to a vein's tissue through plastic, although perhaps some gas permeable plastics (such as are used for contact lenses) exist which will be better. The more recent shunts for this purpose have a one way valve in them which is used to control backflow of spinal fluid, I think. It seems to me somebody needs to try this as a more permanent solution. Especially a person like myself, who does not have many years of life expectancy left anyway, so a 50 year guaantee is not needed.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: MY J0URNEY INTO CCSVI

Postby munchkin » Sun Mar 11, 2012 12:10 pm

The fact that he is treating people with ms is wonderful. I do remember when ccsvi first hit the airwaves and it was the solution and then the problems with occlusions started to show up. Cece is right, it is a little early to say that this is the answer, for those of us with severe damage this is an answer that I hope is lasting. But, I think there needs to be a few more of us who try this and see the durability prior to saying this is the best way.

I will see him in a flash to have a bypass done on my lijv which is a shriveled mess like yours were, but my rijv still has appprox 15% flow and I will not have that one done until I am sure it is not at risk of more damage.
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Re: MY J0URNEY INTO CCSVI

Postby Cece » Sun Mar 11, 2012 3:13 pm

dania wrote:Cece, Dr Hernandez has done this surgery many, many times but not on MS patients. I was the first MS patient.

Do you mean he has done vein grafting many times, or that he has done jugular vein grafting? Do you know for what sort of patients or injury he would do a jugular vein graft, if he did them prior? When I search pubmed for jugular vein graft, all I get are articles about removing the jugular vein to use as a graft elsewhere in the body.
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Re: MY J0URNEY INTO CCSVI

Postby dania » Sun Mar 11, 2012 3:38 pm

Jugular vein grafting is all I know I can ask for more info.
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Re: MY J0URNEY INTO CCSVI

Postby Brainteaser » Mon Mar 12, 2012 2:34 am

Anyone know Dr Zamboni's results with jugular vein grafting? At a seminar on 1 April 2011, I think he said his team had performed on 10 patients.
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Re: MY J0URNEY INTO CCSVI

Postby dania » Mon Mar 12, 2012 3:59 am

I heard that "POSSIBLY" Zamboni is discussing vein bypass with some doctors? Let's hope that comes about.
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Re: MY J0URNEY INTO CCSVI

Postby blossom » Fri Mar 16, 2012 8:19 am

just my thoughts, but i think dania's posts and her story from start of ccsvi to this present time is compelling and very informative. hopefully those that are sort cruiseing in and out of tims now days catch it and it helps them to decide what to do. whether they are thinking of first time treatment or they have found themselves in a mess after treatment-dania's story has it. i certainly appreciate her shareing all this info.
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