This Is MS Multiple Sclerosis Knowledge & Support Community

Well, since you put it that way, I guess I'll let you operate on me. How about tomorrow? I'm free after church!

Seriously though, so good to actually hear it from the horse's mouth. I am shocked and impressed.

drsclafani wrote:Since we are below the veins involved in CCSVI, the jugular veins and the azygous vein, we must traverse the right atrium of the heart to get to them. Sounds scary but actually that is a relatively easy part of this generally easy procedure.

Relatively easy and generally easy...this is reassuring. Just the fact that angioplasty is done on an outpatient basis is reassuring too.

Welcome to the forum. When I said someone might come along with answers, I was not expecting this!!

There was a lot of information in your post...I did not know that the inside of the veins have no pain fibers (good) and that it's iodine and not gadolinium that we'll be injected with (also good).

If it is okay to ask questions...how is the actual ballooning done? Does the catheter get removed and then threaded through again?

Dear Dr. Sclafani,

Thank you very much for taking the time to post here on TiMS. I have already made an application to have angioplasty done with you and would be very appreciative if you could answer a few questions about complications.

Most of what I have read indicates that angioplasty is safe with few complications. If this is the case angioplasty (not stenting) is a no brainer for me even without more rigid clinical evidence of efficacy. Although early in the study process, I am quite convinced that CCSVI is the root cause of much or most of MS. When I asked a reputable interventional radiologist in the Montreal area if angioplasty was safe for CCSVI, he was not too reasssuring. He said that if you dilate a vein there is a significant risk of restenosis (which we already know is about 50% in IJV's) but also a risk that the restenosis gets worse than it was initially. Do you think this is true. If so, what would the magnitude of this risk be? If this is truly the case I might have second thoughts.

The second part to my question is how often can we do angio on the same vein? Can we repeat the procedure regularly, for eg every 6 months if it restenoses. This might be costly, but something that I would be willing to endure and pay for if it could keep my MS progression at bay.

Thanks,

North

Hello Dr. Sclafani! So excited to hear from you. I am scheduled to have surgery with you on week of March 22nd. I am delighted to see you interacting online there are so many of us that are looking desperately for help! The operation has always sounded quite understandably basic to me. My father a surgeon and probably will be in to see you as a patient too always comments that he thinks vein graft would be good if you are still concerned about various stents. He has alway used vein grafts to good avail in neck esp reconstruction. I am becoming quite adept at dealing with the insurrance aspect of the congenital vein blockage and I am going to posting all my info and suggestions to help others .Even those under disability from different states with non participating etc etc.
I look forward to meeting you soon! Barbara

jak7ham9 wrote:I am becoming quite adept at dealing with the insurrance aspect of the congenital vein blockage and I am going to posting all my info and suggestions to help others.

Can't wait to read this!

Dr Sclafani, thank you for posting some very interesting information. We here on TIMS often feel isolated from the doctors who actually perform angioplasty. I hope that CCSVI will soon be recognized as condition with standard diagnostics and treatment so everybody can benefit. And I hope that CCSVI is soon correlated with MS.

ozarkcanoer

drsclafani wrote:

Perhaps it is not appropriate to write a reply, but now that i have been outed as a physician treating CCSVI . . .


Thank you for your information, it is greatly appreciated.
Your opening sentence saddens me. That should not be happening. We would get no where without doctors like yourself.
thank you!

I love forums, they're the best place to find out about a subject in obsessive complete detail...and when it comes to flying off to New York to undergo not yet proven surgical treatment, I needed this level of detail or I wouldn't be doing it.

So for drsclafani to come along and have added to the pool of knowledge that we've been trying to gather here, it is much appreciated.

Okay, wow, so I am shocked and pleased all at once that we have a professional on board to enlighten us with some very needed facts! Thank you Dr Scalfani...you have in no way overstepped boundaries with us here, for we are all suffering and wondering and hoping. And I know I speak for many when we say how much we love Marc, and are looking forward to his update.

I am still surprised, frankly, that you took time away from your very busy schedule (I don't think I've ever been in a doctor's office where I didn't have to wait a very long time to see him/her).

Molto grazie, e spero che ci sentiamo presto,

Zina

drsclafani wrote:If i overstepped my bounds, let me know and i will lurk
ciao for now

Are you kidding??? Post away, my friend!

Thank you, Doc! It's great to hear from someone who really knows! 'twas a good thing you did....

Dr. Sclafani, Welcome!

It's wonderful you've joined TIMS -- in fact, you've made my day!

Thank you very much for the lesson on venograms.

No more lurking, okay?



~HappyPoet
.

After we get the first wire into the vein through the first needle, we thread a sheath over the wire into the leg vein and then all further manuevers and tool exchanges are done through the sheath. This reduces the wear and tear on the vein from multiple catheter exchanges, etc.

So once we identify a narrowing, we put a flexible guidewire through the diagnostic catheter and remove the catheter while leaving the wire in its place. We then thread a balloon catheter over the wire and position it with the center of the balloon in the middle of the narrowing.

The balloon catheter is a regular small catheter with a balloon attached to it. the balloon is wrapped tightly so it is a very low profile and easily goes through the sheath. The ballloon catheter has a small channel that goes from the outside of the patient, through the catheter and exits the catheter where the balloon surrounds it. Through the exterior port on that channel, liquids are injected and thus fill the balloon. The balloon is made of very strong materials that withstand very high pressures (about 30 atmospheres) that usually overcome any resistant to expansion.

Under fluoroscopic vision we follow the balloon catheter until it is in the exact proper position and inflate it. We can do this several times. Mark Stecker's blog shows a balloon inflated in the body.

When the treatment is completed. the balloon is devlated and then removed over the guidewire.

Then we exchange the balloon catheter for a regular catheter and do another venogram to see what effect we have had. Then we move on to the next vein evaluation.

When I asked a reputable interventional radiologist in the Montreal area if angioplasty was safe for CCSVI, he was not too reasssuring. He said that if you dilate a vein there is a significant risk of restenosis (which we already know is about 50% in IJV's) but also a risk that the restenosis gets worse than it was initially. Do you think this is true. If so, what would the magnitude of this risk be? If this is truly the case I might have second thoughts.

The second part to my question is how often can we do angio on the same vein? Can we repeat the procedure regularly, for eg every 6 months if it restenoses. This might be costly, but something that I would be willing to endure and pay for if it could keep my MS progression at bay.

Thanks,

North

Restenosis occured in 50% of Dr Zamboni's patients in the report. It is difficult to say what this means becasue he did not tell us details of what types of problems had recurrent narrowing.

This is a different entity that that for which angioplasty is usually used and we should not correlate the outcomes of two different entities. While it is true that veins tend to restenose with other reasons for veonplasty, the narrowings of ccsvi are very different in pathology. These abnormal veins have all kinds of bizarre narrowings unlike anything i routine deal with. Only time will tell.

The second part of the question is not how simple would it be to repeat the venograms. It is really how much time do we want to use to provide surveillance of failing vein angioplasty when there are so many patients needing definitive treatment. Using Venography to followup is going to clog up the treatment assembly line.

Look, I am coming around to thinking that venography is really the way to assess, not mri and not ultrasound. If vein problems are present in 60-90% of patients, how can you not test with the gold standard test. The reason i am doing these other tests is to determine whether US or MRV can be used as a screening test for followup checks, not to determine whether venography needs to be performed.

Perhaps a bit radical, but I am an angiographer, not an imager.

drsclafani wrote:Look, I am coming around to thinking that venography is really the way to assess, not mri and not ultrasound. If vein problems are present in 60-90% of patients, how can you not test with the gold standard test. The reason i am doing these other tests is to determine whether US or MRV can be used as a screening test for followup checks, not to determine whether venography needs to be performed.

That is exactly what I've been thinking. I know you can't discuss a patient, but lets say you had one whose CT showed a stenosis in one jugular, but the venography showed stenosis in the opposite jugular. Either things changed, or the CT (or mri or ultrasound) isn't reliable.

I really wish BNAC would take say 10 people from each of 4 groups from their study and do a venography. The groups being:

1. CDMS, CCSVI found
2. CDMS, no CCSVI found
3. Healthy Control, CCSVI found
4. Healthy Control, no CCSVI found.

I would really, really like to know what the venography would show for those groups.