This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,

Had my Doppler yesterday.. results were reported as positive for CCSVI .. based on Dr. Simka's teachings/protocol. There was no stenosis so is suspected a faulty valve or 'web'?
How could ballooning / stent placement resolve such an issue?

MRV was unremarkable.

thanks

Interesting you called it a "web", the only other place I herd that term was by a Radiologist (here in Australia) who viewed my MRV . When I mentioned to him that others have found a "membrane", he called it a "web".

Back to your question, the ballooning can pierce and destroy the web/membrane, and then I think the radiologist pulls the balloon through the valve, so it ends up facing the correct way. I think the common fault is that the valve is inverted.

CureOrBust... thank you very much.. makes sense.. he definetly called it a web.. maybe a more fitting term as a membrane might conjur up visions of complete occlusion and this is not the case. ..at least in my case... cheers from Canada!

PCakes,

I heard valve problems respond well to ballooning, too. Have you booked yourself in anywhere?

Sandra

Hi HC,
No not yet.. still digesting the results.. only been a few hours... quote from Dr.. "based on what i have seen today you meet Dr. Simka's requirements for treatment."

Is that right, that they're able to save the valve and get it to face the right way like that? I thought they were ballooning and destroying the valves.

Congrats on the positive findings & hope you will soon have this fixed, one way or another.

If you have been diagnosed with CCSVI and are not able to get further screening or consultation with a specialist for further testing and advice about possible treatments you should be getting from our Canadian health care system, you should let Health Canada know and ask them for help.

They deal with concerns from people not getting the care they need. You could contact.

I met Ms. Desforges at the First Canadian Patient Summit, and she has been made aware of the issue of CCSVI. She was interested and respectful.

Ms. Lucie Desforges,
Director,
Office of Consumer and Public Involvement,
Health Products and Food Branch, Health Canada.

address is
11 Holland Avenue, Holland Cross
Tower A, Suite 513 A.L 3005A
Ottawa, Ontario
K1A 0K9

or email lucie_desforges@hc_sc.gc.ca

Pcakes, I got the same quote from Dr. Cooperberg. Be sure to let him know of any improvements, should you receive intervention. He told me that he would believe in CCSVI if he heard results from 30 patients. Now that is a nice small sample size for a study, with anecdotal evidence, to convince a Canadian doctor!

Cece, I understand that some Docs are just "stroking" the valve to return it to its rightful order. I am getting the distinct impression also, that we do not want our valves destroyed.

Johnson.. I had a very positive experience (hm no pun intended there) with Dr C. I found him to be approachable..willing to listen.. detailed and genuine in his advice. I was also asked to advise him of my plans and any results.

Brightspot.. thank you.. this is great information..

Cece..Happy C.. Cure ..everyone..thanks so much..

a thought... my positive doppler also uncovered a couple of small thyroid cysts that i will now have to monitor.... Canadian Health Care in mind.. what if i was to go to my doctor.. discuss the cysts.. I'll be told i need an ultrasound.. i could at that time volunteer to go and pay at a private clinic .. now we reverse the outcome.. yes..you have cysts.. but look... "you also have a venous valve/ flow issue".. how could this be ignored?????

thoughts???

PCakes wrote:a thought... my positive doppler also uncovered a couple of small thyroid cysts that i will now have to monitor.... Canadian Health Care in mind.. what if i was to go to my doctor.. discuss the cysts.. I'll be told i need an ultrasound.. i could at that time volunteer to go and pay at a private clinic .. now we reverse the outcome.. yes..you have cysts.. but look... "you also have a venous valve/ flow issue".. how could this be ignored?????

thoughts???

PCakes, I have a large number of collaterals from my thyroid. I have also lost over 30 lbs. over time, regardless of caloric intake. I am 6'1" and weigh only 149 lbs. I used to be a 186 lb. athlete. I am going to approach on the thyroid issue. That needs urgent attention regardless of anything else. It ought to be an easy progression from thyroid vein collaterals to jugular/innominate/vena cava issues.

johnson,

i too, have trouble keeping wieght on.. until the thyroid discovery i attributed this to the sub-concious stress of this 'monster'.
I have never heard callatorals described as thyroid associated but, yes, this sounds like a good path to follow.
Damn sin that we have to think of ways to trick our system.

wishng you luck..pcakes