This Is MS Multiple Sclerosis Community: Knowledge & Support

Just wanted to thank everybody for the kind words about my blog, and your well wishes on my behalf. They are truly appreciated.

Winnipeg, please don't beat yourself up over your initial try at CCSVI treatment. What's done is done, you did what you thought, at the time, was best for you. Concentrate instead on appreciating the now, as it's the only moment you have any real control over. Make intelligent inquiries as to possible future courses of treatment, and use your past experience to guide your treatment decisions.

Everyone should keep in mind that the treatment of CCSVI is still in its infancy, and is evolving on an almost daily basis. Certainly, the treatment approach that Dr. Sclafani used on me one year ago is much different from that he will use on his next attempt, should I choose to go in that direction. Likewise, treatment protocols practiced one year from now could very well be just as different from the ones used today.

As I've stated in my blog, if your disease is relatively nonaggressive, waiting for the science of CCSVI to mature might not be a terrible option, especially considering the tremendous amount of research currently ongoing. Often, discretion is the better part of valor.

Then again, it is starting to become fairly evident that patients with less progressed disease are seeing greater benefit from the procedure. Each patient must make a sober and honest self-assessment, based on their individual mental calculus.

In my case, I seem to be losing functionality by the week, so it's any port in a storm…

_________________
Marc
www.wheelchairkamikaze.com

Thank-you all for your support and encouraging words. I feel a sense of assurance that everything will work out after reading your comments. I don't want it to seem like I am a Debbie Downer, for the most part I am a positive person.

There are just periods of time when I spiral out of control...where everything I see and do makes me feel sorry for myself, little things like seeing a jogger, or someone walking their dog, trips that people are going on...my gosh I could go on forever. But sooner or later I realize I am slowly killing myself by obsessing over it all. With the help of my husband and my family I can pull myself out.

I love my job and it keeps my mind and body focused in a positive way. It gives my life a purpose and a reason to get going in the morning. I hope and pray I will be able to work at least for another year. That pill, however, will be a hard one to swallow.

In the meantime, I purchased some books on the net. I am going to try doing the Swank diet and getting a better grip on things within my control.

Welcome Munchkin!! You are in good company

My apologies for getting off topic with my posting...

Hi Wpggirl and everyone

I should apologize, I kind of barged in on your question. Thank you for going in this direction.

Your ability to share your fears and concerns makes it that much easier to deal with them. MS has forced me to face some issues that most other people never have to think about. Family, friends, and this site and others (which provide the we do understand and know what you are feeling) make this journey bearable.

As a Canadian, I won't be going for a follow-up procedure right away, I think I do need time to heal and process what my options are. My IR is fairly cautious so I am hoping for a drug treatment on a temporary basis. One of the things I can say is that I do believe that CCSVI is a real part of the MS mystery.

Thanks to you all.

Is it the right IJV that popped or the left one? Those pops are an indicator that it was an annular stenosis and that the ring (that goes around the diameter of the vein around the valve) suddenly tore, making a "pop."

Hi Cece

It was the left IJV that popped, the vein that has pretty much closed. From your understanding is this something that can be dealt with?

I'm still in a bit of a panic mode so I appreciate any info you have whether positive or not so positive.

Thanks much for sharing your knowledge.

Here's what Dr. Sclafani said in my thread:
www.thisisms.com/ftopicp-154496.html#154496

First he describes the sort of annulus that pops, then says this:

I am hearing the word thrombosis repeated as a possible risk; if it were myself I would ask my IR if blood thinners might prevent any further clotting and allow the body a chance to recanalize and, if it was nearly closed, I'd push to get in again with him or any IR who could get a catheter through the opening while there still was an opening because if a catheter can get through, it can be ballooned, but if not, it cannot. But I am in the US where my procedure was covered by my insurance, I could get this repeated for a $25 copay, and that is not the case in Canada.

I advise what you are doing, which is waiting to hear back from your IR, but then bring his advice here to the forum where we can all hear it too. I wish that this was not happening to you but if there is something that needs doing, at least it has been caught early. Possibilities are that it is elastic recoil without clotting, or clotting, or this new collapse of the vein from overstretching. The first of those is the one that has the best outcome.

Munchkin, very sorry for you. I had some problems myself and I am not doing so good... If your jug has closed up, not only re-stenosis to the size it was originally, I would discuss with my doctor the best way to keep the blood flowing while waiting for more research. You don't want to have it permenantly close! and so far we heard this can happen within months, one IR told me 3 months but for others it happened more quickly.
CCSVI procedures are great when it works but it is a bitch when it doesn't. Best of luck, sylvie

Vivavie, you are so right, when it works it's like being the pre-MS person and when it doesn't it's a bitch. Although, I would probably use much worse words right about now. I have read some of your comments (you have had a few procedures I think?) and I am sorry that you have gone through this more than once. You are a strong person.

Cece, you have done so much to help me understand all of this. I am a person who needs to know the good or the bad as quickly as possible.

I will be talking to my IR and hopefully we can do the drugs until my 3 month follow-up and then decide where to go from there.

Thanks

Unfortunately if it is vein collapse drugs may not be enough. It would help if it is a blood clot or a thrombosis. I was on mega blood thinners regimen when it happen and if I remember correctly Dania (her 3 veins totally closed off) was on Coumadin. Just be careful... keep those veins open. I feel bad saying those things but time is of the essence in some cases.

Do you think multiple venoplasties, even with moderately sized balloons, could cause vein collapse? Dr. Cumming has said recently that collapse is not thrombosis. I think that it collapses first but then it does clot together second?

have you had an mrv of the brain?

i am going out on a limb and saying that might be your problem. you can stretch the veins in the neck but if the outflow is bad, its just not going to accomplish anything

for the record, i do not think that the muscle is really the problem. I think i will get clearer when i repeat the venogram. I reviewed the muscle thing with several docs, including paolo and we do not think it is the major factor.

you absolutely did not do anything wrong and put yourself at risk by doing an ultrasound.

Can you tell me whether you were on aspirin, plavix, coumadin, lovenox, arixtra or any other anticoagulation therapy?
what size balloon was used.?
is your vein progressively narrowing? was it supine and upright or both? or is it recoil of the obstruction?

i recently had a case where the sonographer read it as no flow, which i interpreted as a thrombosis.
after reviewing with dr mcdonald, we concluded that i was confused by his use of the words "no flow". there was not clot, just stagnant flow.

Hi Dr.Sclafni

Your comments are very much appreciated.

I was on aspirin and plavix for 30 days, the balloon was 16mm x 40 mm and there were several prolonged dilations with the waist resolving at 22 atmospheres. There was a very loud pop heard by many in the room and my IR did go back to look to make sure the vein had stayed open. The report did note a small tear and dissection that was likely of no clinical significance.

I went to a U/S clinic in Fargo that follows the Zamboni protocol and the tech said he was having a really hard time finding my vein (I was supine at that point) and at the end of the imaging showed me the image of my LIJV compared to the RIJV and there is almost no vein visible. He did mention that I had good flow through my RIJV. I don't have the actual report yet as I just had the U/S done on Friday afternoon.

What does stagnant flow indicate?

Any comments/information will be helpful. Thank you for all the time you put into helping those of us with CCSVI.