This Is MS Multiple Sclerosis Community: Knowledge & Support

i certainly do not agree with that idea. even if a ijv is small, it is also a collateral in one way or another.

the loss of a vein is a loss

i am now using cross sectional area as the measure rather than diameter of the vein. With ivus we see vein diameter as being8mmx 14 mm sometime. So cross sectional area is better.
But even thiss has confusion. I have noted as much as 100% difference in cross sectional area between inspiration and expiration.

I generally try to use the thoracicf pump to increase diameter maximally. then i select diamteres that are about 50% more that the maximum calculation i study. I know it is arbitrary, but i find it is conservative enough to begin with

i do not follow that logic.

Thanks for weighing in on this Dr Cumming and Dr Sclafani. I didn't know what to think...

i definitely do not agree with this. Collateral flow is part of the problem to begin with. The goal should be to restore direct line flow

Agree.

I am still really confused on this topic. I just read a post that a lady in a study group of 50 had treatment (I think the tear or pop method) to the valve and that none of them have had restenosis or thrombosis and all are anywhere from 8 to 18 months past their treatment date.

I had originally heard similar things in the PI symposium given by Dr. Hewitt in regard to the restenosis rate being down significantly if they do a small tear to the O-ring valve.

But after more research, I read and heard others who felt or experienced that this technique was actually more risky and could lead to more severe stenosis or more cases of thrombosis.

So this leaves me utterly confused.

As also I am still confused on whether the IVUS is truly superior to the venogram. Hence I seem to keep stalling on getting the procedure because I can't seem to choose which IR to go to because each does it different and I don't know what is the best way.

If there are more opinions on this topic, i would love to hear them. What my fear is are the stories where people keep restenosing and in some of these cases their subsequent treatmetns don't bring as good of results or occasionally they are not candidates for a re-treatment. That is why I am very tentative. i don't want to sound negative, I just want to make the best choice.

thank you.

If you can wait, your MS symptoms are not critically changing, my opinion would be to give the Dr's another 6 months. The Dr's (the Dr's on this forum) have just started to change their protocol. Both Dr's here do follow-up with their patients so they are aware of what is happening. Give them time to see some longer term results with IVUS.

I had very good results but when my vein started to close those results started to go away. My IR was fairly conservative but s*#t still happens, I am seeing him tomorrow to find out the status of my veins now and to see if I have any options. If I knew then what I know now I would have waited.

This gives you more time to become comfortable with your decision and gives a longer term perspective of what the results are. This is something you don't want to go into when you are unsure.

Munchkin, good wishes today that the appt goes well and you have options.

Carol, last fall I kept posting, "The different doctors all do things differently!" with a bit of panic in it. We really are at the beginning stages of this discovery.

It is frustrating that with BCBS you have to either hurry and get it in while it's covered (and only with the doctors with whom it is still covered) or wait but then pay out of pocket or go through an appeals process.

Thanks CeCe and Munchkin for the the recent responses. On the one hand I certainly would like to get rid of these symptoms (primary symptoms are brain fog and fatigue but also have several others such as parasthesias in the limbs, bladder, and vision). The rush would be partly so that BCBS still covers it and partly because I just want to feel "normal" again now.

But because I have so much ambivalence and can't seem to go through the actual point of making an appointment, maybe it shows I am not ready. I have been relatively stable at the rather crappy level I am at for quite a while now but I don't think I have gotten worse, there are just variations on different days.... If I started to go downhill fast, I probably would be at the IR's office ASAP.

I wonder if in 6 months from now there will be more consensus about the best way to do this treatment to reduce risk and optimize benefit.

It is also hard because I read so many amazaing success stories and then I read some stories that are not so good at all, which makes it also a difficult decision--there is no way to know which I will be.

I guess that is why I keep putting so much emphasis on which doctor to see. I think but am not sure that much of the outcome lies with the doctor's skill level?

Munchkin,
You mentioned the two docs who post here (I assume you mean Drs. Sclafani and Cummings) are changing their protocol. By "changing" do you mean that they are doing the follow up now that you mentioned or are they actually making changes in the procedure?

Thanks if you see this.

This is such a hard decision for me for the reasons I posted previously. I know others are so much more positive and optimistic both pre- and post-procedure. Maybe I'm not in the right place if I am not feeling like that excitement about getting the procedure and rather I am just feeling scared.

I have had MS for 5 years and still have full mobility--that is the one thing the MS seems to leave alone -- so I never want to do anything that could compromise that, although I know it's possible that time could start taking my mobility away as well.

Hi

From what I understand they both have done follow-ups in the best way they can. I guess it depends on where the patient is from. They have both changed their procedure protocol to using IVUS, I think Dr. Cumming started using it all the time a month or so ago and Dr.Sclafani about the time Cece had her procedure done. These statements are from memory so I could be a little off on the details.

As a Canadian, I was a self pay so I really can't comment on the insurance issue. I used retirement savings, regular savings, and credit. My opinion is that it still isn't worth rushing into a decision.

My mobility is affected constantly and was getting worse when I had the procedure done so I had the now or never feeling. Wrong reason to make a decision. From everything I have read the cog fog and fatigue are almost always fixed and from my own experience my physical disabilities were being erased. I don't think I have been physically disabled long enough for the permanent damage to be severe enough.

I was diagnosed in 2005 but by that point I was already entering the secondary progressive zone. The disabilities were progressing without a relapse and they didn't remit at all. My belief is that if you aren't going from a cane to a wheelchair you are probably ok for a few more months at the least. The body is pretty amazing and you can be fully functional for a long time.

After having the procedure and feeling the most normal I have felt in years was like being reborn. But, when it started to go away, I really can't put that feeling into words. My belief is that CCSVI is such a real part of my disabilities and this makes me very sure of the procedure just not the technique that I had.

Do you take low dose aspirin? If not, maybe give it a try with ok from your GP. I had horrible fatigue, I was sleeping (napping) in the morning, afternoon, and in bed by 9 pm. I started taking the aspirin for other reasons and my fatigue has changed for the better.

Sorry for the long post, I guess my bottom line is don't rush if you are not totally comfortable, don't have it done yet. Can you talk to either Dr's? Where are you living?

To be technical, Dr. Sclafani used IVUS from the beginning. The recent change is in how he used it; previously it was to see interesting things that could not be seen on venogram alone, now it is that plus to precisely measure the vein so as to minimize damage to the vein.

Thanks Munchkin,
I really appreciate the feedback.

Because brain fog and fatigue are my biggest problems I feel in that way I am a great candidate for CCSVI.

When people restenose or feel their symptoms returning, is it usually the brain fog and fatigue that come back as well, or just other symptoms? If I may ask for you personally when you said some symptoms started to return, were brain for and fatigue among those that returned?

I really agree with what you wrote that the CCSVI is very much a part of the healing equation, but the best technique has not yet been established with certainty.

I think you are right not to rush into something because of insurance or panic.

CeCe,
Is it possible to use venogram and IVUS together in the procedure? Or does that not make anyy sense?