This Is MS Multiple Sclerosis Community: Knowledge & Support

Rokkit, I think the heat is getting to me. I can't remember where I read this, but it was something about a doctor or researcher looking into stenosis of the lumbar veins and the possible implications for the SPMS and PPMS.

Hi Dr. Sclafani,
Have there been many problems found with the external jugulars? I think mine is very small on the right. I know it is hard to tell by one picture. It does seem to get a bit brighter on other images but still is hardly visible at all. I was told my MRV was normal.

Hello Dr Sclafani

I have another question. Quite a while ago, when I was 23 or so, I had a defibrillator implanted. I didn't want it but my family persuaded me. Anyhow, I got my first symptoms of MS, shortly after the operation. I have always suspected that one led to the other. I had it explanted when it was clear that it wasn't in fact necessary. Years later it became apparent that anaemia was leading to irregular heart rhythms, but anyway.

When I had it explanted they removed most of the lead but lost a stainless steel wire in me in the process. It was implanted via the subclavian vein. I've only just realised that this vein can be associated with CCSVI. I'm thinking ahead lots here, and I understand that a definite answer won't be possible with just this little information, but would you imagine if it turns out that my subclavian vein is occluded, this stainless steel wire lost in it will make my treatment more difficult/impossible?

I just had to ask.. I became more pessimistic as my MS progressed and now I'm imagining the (untreatable) worst.

Thanks so much.

Hi Dr. Sclafani,

Someone mentioned it would be a good idea if a less scary name for the cutting balloon could be found, and I have a suggestion:

The shaping balloon catheter.

Your thoughts?

~HP

Hi Dr. S,

I've shared the information regarding your symposium with two vascular surgeons I've been corresponding with (one at Rhode Island Hospital and the other at the University of Iowa), and the nurse of a very prominent vascular surgeon (if you'd like names, I'll send them offline) but I wasn't sure if it was ok to do so after I read this on Facebook....

This event is not open to the public. The auditorium has limited seating and IR's in the NY tri-state area and select neurologists were invited by email directly by Dr. Sclafani, and there is room for more to attend. The subject matter is targeted to IR's and MS neurologists. Attendees must rsvp and be registered. The media is invited. Wheelchair Kamikaze will video tape the symposium for the CCSVI Alliance website. If there is room, patients will be invited.

She seemed to have "inside" information. So, I'm happy to know that it's alright to "share the word".

Thank you for everything you do, Dr. S. That can not be said often enough.

Dr. Sclafani,

My question relates to testing/scanning/diagnosing of CCSVI. I have seen the "best way" vary from MRV to transcranial color ultrasound to catheter Venogram to IVUS...

I have been told, and I have read, that the catheter venogram/venography is the "gold standard" of IRs and that is the best way, but now I have heard that the intravenous via catheter ultrasound is the best way and a catheter venogram can give a false negative...???

Is there a "best practices" yet? Do you have a recommendation as to what we should be looking for in terms of testing for diagnosis?

Your wisdom is most appreciated. Thank you!

Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh

Angioplasty companies could use good marketers. You thiink Cutting Ballon is bad. When antioplasty was just getting started, C.R. Bard (then U.S.C.I.) had a balloon for the coronary arteries that some brilliant person in marketing named "The Headhunter".

Just to interject, my IVUS in April printed out on your average small sonogram paper maybe 3x3 inches. He explained what I was looking at as I was laying there because I asked to see it, it's kinda like looking at a very early on sonogram of your child, not much to see there, for the untrained eye of course. What I wouldn't give to have a copy of that! All I did was nod my head and agree. "well of course" lol. Musta been the morphine talking... It did show (after it was pointed out to me with a ballpoint pen) the septum inside my vein before and after. Guess it wouldn't be too much of a stretch to think it can see other stuff too. Plus the annular vein was clearly visible. Trippiest thing I'd ever seen.

Sorry for butting in, I'm sure the good Dr. will have plenty to say...

Mark

IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography

Dr Sclafani, may I ask in which sense IVUS is expensive? I guess expensive to invest in the IVUS equipment.

But once one bought the equipment, are there then high maintenance costs or costs involved to use it in each procedure? I am just asking as heard that some docs only use it in "special cases" since expensive. Do not understand however once one has equipment what holds back to then use in each procedure if more efficient?

IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography

The IVUS unit, that attaches to the IVUS catheter is expensive. Its applications are limited, thus the per procedure "amortization" of the unit is expensive. Then at each procedure, one must put in an IVUS catheter which itself is very expensive.
Also IVUS is time consuming, and this adds another expense to the procedure, for example in doctor, nurse and technologist time and in limiting the number of cases that can be done in a day.

Thus occlusion of the inominate vein may make it impossible to treat any IJV obstructions on that side
Moreover, someone told me a story about how they had radiation to the chest that resulted in stenosis of the subclavian vein. that in turn appears to have resulted in MS. could you be a second patient?