This Is MS Multiple Sclerosis Community: Knowledge & Support

bob, harry, thanks for shaking hands back to the known risks.. i haven't heard anything new.

KimLovesTea,

Have you found doctors positive towards CCSVI in Indianapolis ? If so that would be great !! I recommend that you start a new thread about this topic on the board. We would all respond I am sure !

ozarkcanoer

Please could we have some posts from people who have actually had this done. I have read most of the posts on this subject but can find none from doctors who have done the procedure or MS patients who have had it done.
These are the ones that would interest me as an MS sufferer, not opinions of "interested" parties.

Hello and welcome H,

This is the link to the info you want. http://www.thisisms.com/ftopict-8346.html

You also might want to visit other "sticky" threads at the top of the page, especially the sticky for new members -- all the stickies contain a wealth of info.

~HP

Does anyone know what the new liberation procedure is that Buffalo is going to study. They seem to say it is different than Zamboni's angioplasy and Dake's stents.

good evening everyone,

I am a newly diagnosed MS patient. I would greatly appreciate it if you could kindly explain the following 3 issues for me:

(1) What does this mean: unknown patency for stents in jugular veins.

(2) I have a numb left knee because of MS. During the "remit", does the numbness go away, or "remit" means the the body is not being attacked currently but the symptoms of the previous attacks do not go away ?

(3) My impression is that venous angioplasty is an established and not uncommon surgical procedure, so why is it that MS patients are having such a hard time finding a place to get the procedure done ?

Thank you,

LP

LP, welcome, although this is a thread specifically for angio/stent risks...let's see...unknown patency means it's not know how long the stents will last in a vein...sorry to hear about your knee. In a remission the symptoms might go away completely or might stay. It's all pretty individual. ... arterial angioplasty is common, venous angioplasty is not nearly as common, and it's also not so simple to get a CCSVI diagnosis when it's a newly discovered condition that doctors are not familiar with...hope this helps!

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Thank you so very much Cece.

I went to the False Creek Clinic in Vancouver and have the MRV done. The MRV diagnosis was: "moderate caliber decrease of the internal jugular vein on the right greater than left at the C1 level with persistent caliber attenuation in the upper cervical region."

The radiologist was not available at the time but I am having the ultrasound done as well.

((( My understanding is that the MRV needs to be done at False Creek because of the availability of the advanced MRI machine at False Creek but the ultrasound can be done anywhere because there is not the issue of the need for an advanced ultrasound machine. )))

Indeed I am trying to balance the risks of venous angioplasty verses the risk of having more damages done to my body by the MS.

What I do not understand is that, should I decide to go for a venous angioplasty, why isn't there a clinic/hospital where I can go for the selective surgery ? Is it because it is hard to find a surgeon who has experience with venous angioplasty ? According the Zamboni's paper, there was little postoperative complications.

Thanks,

LP

I went to False Creek as well and had the ultrasound with MRV also. The ultrasound didn't show anything at all because the technician their wasn't understanding the way that this test should be run. The MRV shows what I wanted to see, and for that I have been chosen to go to Chennai India this March.
The reason why I am going their is because the procedure isn't approved here in Canada. I called the Cleveland Clinic, which is a big hospital in Ohio and I spoke with one of the venologists their over the phone. When I asked him about what they were doing about the new CCSVI theory? he had noidea what I was talking about.

The other day on CTV news they mentioned that their was going to be a clinic put up in the Buffalo area to preform the procedure.

Pam, my MS is just the worst and it is getting very hard to do anything at all and this is why I am going to India for this. I can't afford to wait.

Paul

Good morning Torcan,

India was also an option to me. I am balancing further damages by MS vs risks of surgery and postoepratively complications, in particular, how do I get postoperative care should problems arise, say, 6 months after surgery. Can you tell me what plan you have prepared for this latter consideration ?

My major problem is that I have no access to a venous surgeon specialized in neck and upper chest so that I can ask he or she the surgical risks. I do however have access to a vein doctor who specialized in ugly veins in the legs, but he gave me the standard answers, for examples, veins in the neck are different, there are surgical risks, etc. I am seeing this "leg veins" doctor again later this month and I am going to bring the False Creek MRV CD with me with the hope that he knows how to read the MRV of the venous restriction at the C1 level, and with the MRV information, be more prepared to offer details, such as what stent to use for the vein, how secure is the stent, how long would the stent last, how long do I need to be on the blood thinner medicine, what happens if the stent gets loose, etc etc.

If you don't mind I would like to ask you the following questions:

(1) what questions would you ask the venous doctor ?

(2) When you say the procedure is not approved in Canada, do you mean venous surgery in the neck and upper chest ? How do you know it is not approved ? or do you mean no surgeon knows how to perform the procedure ?

(2) Please let me know how do I keep track of the clinic development in the Buffalo area.

(3) I read in this website of another thread which follows individual patients who has had the surgery at Stanford. I did not read all the patients' cases ( I will this weekend ) but it seems patients who have had surgery reported improvement and minor complications exactly the way Zamboni reported in his paper. Do you know why Stanford is not doing the surgery any longer ?

Thank you,

LP

Hello

You have a pile of questions here.

The fact that I am facing here is that my MS is progressing way to fast for me and at 36 years of age, it just tears me up knowing that their was nothing to help me since the diagnosis in 1999 on Valentine's day of all day as well. So yesterday was my 11 year aniversary. Great eh.

As far as all of your questions go, I have no idea about Buffalo at all because this is not my focus at all. When I come back from India, I will have all the medical records on what was preformed on myself and if their is a problem at all then 911 would be a great start I think? This is not a radical treatment at all, so this is a relief for myself whereas a bone marrow trasplant would be just insane. This was an idea a year ago but I wouldn't go through with that at all. This is so much different.

The ballooning and stent that is allowed here in Canada and the U.S is for the heart valves and not the neck. Two different conditions and this is why it is not approved. I spoke to a man from the Clevland clinic in Ohio. I won't disclose the Dr's name at all but he was a vienologist and when I asked him about what they are doing with the CCSVI theory? He didn't even know what I was talking about. This is why I am going to India.

I am looking forward to posting results in the future on this

Who can I get in touch with so that I could go ahead with this? I understand the Professor is Polish as are my parents. Does anyone have an address/phone number for him. I am desperate to go ahead with this and need to get in touch with him to find out how the procedure works, how much it costs etc. If someone could send me this information I would be forever in their debt! Marta x

Access MRI in Surrey BC has the software to do an MRV.I got mine done there. Right jugular vein is closed the left narrow. I will see a vein surgeon in March.

Farmer ... isn't that right near Vancouver? Why are all of these places in western Canada? We need to get one in like Niagra, or somewhere out east.

Wait, I have an even better idea: Winnipeg, the Geographical Centre of the Continent! Advantages:

-Close to everybody!
-High rate of MS!
-Large Italian and Polish communities!
-Right where I live!

-d

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dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread