I just wanted to give everyone an update on my CCSVI experience. I'm having second thoughts about participating in the trial at Stanford run by Dr. Michael Dake. But it's not because I think this is baloney! I decided that if I get this treated I would like to do it close to home for post-procedure monitoring purposes. So I sought out help in my home area. I saw a neuroradiologist last week and he took a look at the MRV scans I had done at Stanford. He definitely agreed both of my lower jugular veins were blocked quite significantly--so now a second doctor has seen the problem, and this is someone who was technically more objective because he had only recently been reading about CCSVI and was new to the game. In fact, I kept asking him if he was sure he saw the stenosis in the veins and he kept saying yes! He and I both agreed there is a correlation between MS and CCSVI but we don't know if CCCVI causes MS yet. But he was very open to fixing the problem since it was so obvious. Anyhow, we may be talking treatment soon. I will keep you posted.

Sounds exciting, Nat. Please do keep us posted.

Natalie thank you so much for updating us!I can't believe I missed reading your first post.Sorry not on much.Jim

This is exciting news! Hope you are helped with the procedure.

gmi

Thank you Natalie. It's all so very interesting.

Sal and others who may be concerned, arteries and veins are built very differently, and you were quite right when you mentioned that veins are thinner and more fragile than arteries, but except for the Pulmonary veins, all veins lead away from an organ.... the brain included.

Also, where arteries have thick muscular walls, veins have valves that stop the backflow of blood. These valves are strong enough to keep blood from travelling backwards, so they should be strong enough to prevent a stent from moving backwards (against the flow of blood) from the neck up to the brain.

No-one wants surgery, and no-one wants stents, but if I had to have them I would. I'd not be concerned that they might move backwards, up the neck into the brain.

Just the same, let's hope that none of us ever need them.

Hi Natalie,
I don't know how I missed this thread but with my relapse I wasn't on here many days before the holidays.

That said, Natalie I think having found the blocked veins, and perhaps having the procedure done near your home is a very smart decision.

If I had the testing done, and if any blockage was found, I would get the procedure in a flash. Any Vascular Surgeon or Neuro-Surgeon would have done many of these procedures during their ordinary surgeries on patients. They have new, smaller, soft mesh stents, that are great for veins.

Most of these surgeons do similar surgeries for accidents and injuries, birth defects, and other diseases, etc.

I wish you lots of success in whatever you decide to do, and whenever you make that decision. We appreciate your updates, please keep us informed.

Thanks for being a leader.

Hi Natalie!

I too missed this thread until tonight. Wow! How interesting -- thank you for giving us the 'scoop' on the whole procedure. It sounds like a logical deduction that needs to be fixed, MS or not. A couple things you mentioned, hit home with me...the low blood pressure.....taking a long time to "get going" after getting up for the day, no matter what time. Could you answer a question for me? Do you or did you have alot of pressure in your head? Early on before my "official" diagnosis of MS, that was something I kept mentioning to every doctor. It felt like my head was going to explode -- not like a headache, just pressure. Occasionally I would even have a 'goose egg' to go along with the pressure. It seems to have let up in recent years but I wonder if it could go along with the CCSVI?

Please keep us informed in whatever you decide. And I certainly hope there will be someone interested in this here on the East Coast.

Take care......

The neuroradiologist I saw seemed so unconcerned about stents in the veins (I asked about arteries v. veins) that he was almost blasé. He looked at the problem and said "I've never paid attention to this before but it looks pretty easy to fix." He puts stents in the brain/head all the time, in both veins and arteries. And my problem is lower jugulars which are even easier to deal with (not in a tight small space high up). He said that you need to keep an open mind when it comes to the venous system and that doctors know much more about arteries than they do veins. He found the idea of CCSVI intriguing enough to keep exploring with me.

Judy, I have never had pressure problems in my head. I did have headaches with my first MS experience, though. Your problem with the goose egg sounds so unusual! Who knows, it could be related.

I do know that at doctor at a NYC hospital is putting together a trial to test and treat CCSVI. He has already treated one person under the radar--I don't know his name but do know he will announce this year. A vascular guy at Georgetown is about to begin a trial too. More and more people are popping up on forums having been tested on their own, and sometimes even treated. In early Feb. the results of a blinded test to look for CCSVI in the first 500 MS and control patients (the total examined will be 1700) at Jacobs Neurological Institute at the University of Buffalo will be released. Word has it that the results are "proof positive" and quite amazing. There may be a huge explosion of interest when this comes out.

If you want the latest info that is not too overwhelming in terms of length and multiple posters, try plugging in Facebook CCSVI into google.

I will keep you posted on what I decide to do.

Just wanted to pop in here to say that the concern about placing stents in veins is not unwarranted.

One of the patients that Dr. Dake at Stanford operated on had a stent come loose from his upper jugular, and migrate to his heart. This patient had to have emergency open-heart surgery, during which he suffered a minor infarct, and the stent was found to have permanently damaged one of the valves in his heart while it was bouncing around in there. Furthermore, the surgery involved actually cutting into one of his ventricles, and this patient is looking at lifelong and life altering repercussions as a result of the surgery, including cognitive deficits caused by his being on a heart lung machine for over three hours.

Dr. Dake ceased performing procedures four days later.

The danger in placing stents in veins is not that they will go backwards and enter the brain, but that once loose, there is nothing to stop them from heading directly into the heart. Unlike arteries, which grow progressively narrower in the direction of blood flow, veins grow progressively wider, thereby giving a clear path to the heart.

I am cautiously optimistic that CCSVI will prove to be an important discovery in the quest to unravel the mystery of MS, and even attended a successful fundraiser for the continuation of the Buffalo University study last night.

I had a CT venogram done this summer, at the suggestion of Dr. Dake, which revealed that I have stenosis of my upper left internal jugular vein.

I've spoken to several vascular surgeons and radiologists, including some at the NIH, who all sternly cautioned against placing stents in the upper jugulars. A balloon procedure would be the recommended way to go, but Zamboni found that 50% of the patients he treated with a balloon procedure suffered restenosis within 12 months.

If CCSVI does in fact prove to be fact, new procedures and stents will be developed specifically to be used in the CNS venous system.

Thank you, Marc. I don't want anyone rushing out to have this procedure, until they've perfected it.

I'd rather keep my MS, if it meant other horrors happening to my body, because of stents floating around.