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drsclafani wrote:

drbart wrote:

drsclafani wrote:Today I added a cutting ballloon to my amamentarium of tools for use in liberation. This balloon has some sharp edges of metal attached to the balloon. When the balloon is opened, the metal presses into the tissues. it creates a indentation. After creating the creasing of the vein or valve, I then went to my usual 14 millimeter high pressure balloon and the vein dilated so easily and smoothly. it was like buttah! and created a very large venous confluens.

a friend had his second angioplasty thursday. his stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.

initial reports are that it wasn't quite like buttah, or even i-can't-believe-it's-not-buttah. they wound up using "the wire", which i gather is a pre-balloon thing that sounds even creepier than the cutting balloon animation i saw elsewhere.

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can you comment? are you still a CB fan?

i am but i havent used it in two months

i am not sure i would have used a cutting balloon that high. There are some important things up there.
into the skull? i have my own trepidation doing that. Thankfully i havent had the opportunity to meet that critter yet.

so it was interesting to see dr siskin report on this case, and his observation that the vein's reaction to the cutting balloon was to close up even tighter than before.

have you and he had subsequent discussions about cutting balloons?

Maybe, if veins are really floppy, a bit softer approach is required, than in arteries. My speculation (actually I was in a haze of valium when I got my stents, so the speculation would not be legal testimony anyway) would be that only the more rigid deformation would be required, and not even that, if you stressed the walls enough, for long enough.

Maybe if you just waited a few more minutes (15?), you might get more of the vein's attention and convince it not to restenose right away. I like the idea of multiple inflations, too. But I'm not someone you would be wise to consult, having not much prospect of ever needing to decide.

What do you think, Dr. Sclafani? Will it weaken a stricture better with multiple inflations? Would more time inflated be as good? Or a cutter with a special, duller, vein blade? I know there are so many of us that the quicker way is probably better.

I always thought dentists were in too much of a hurry, and came back into the room well before the freezing 'took'. I was not glad to see them. This was before I convinced them that the slower-acting stuff with adrenaline in it was bad for me... :^)

Dr. Sclafani,
Can you explain "slow flow artifact"?

Thanks!

Hi All

This is my 1st post on here so please be gentle with me! I live in Essex, UK and flew up to Glasgow to have my doppler scan done at the EHC. It would appear that although no stenosis was found, I have malformation of valves in both IJVs which are causing reflux - so they believe I have evidence of CCSVI.

Here come the questions...
1. CT Venogram/venography - Who can do this? If it's IRs do they need to know specific protocols? I am keen to get this done as it could show up problems with the Azygos and more details about the jugs!

2. What is the treatment for malformed valves? Angio? Stents? Vascular surgery? and who can do this?

Currently there is nobody offering anything more than a Doppler scan in the UK, so I'm wondering if it's worth taking this to my GP for referral to an IR or vascular surgeon or do I have to either go abroad or sit on the EHC waiting list?

Any nuggets of wisdom gratefully received TIA
Jay
x

jay1508 wrote:Hi All

This is my 1st post on here so please be gentle with me! I live in Essex, UK and flew up to Glasgow to have my doppler scan done at the EHC. It would appear that although no stenosis was found, I have malformation of valves in both IJVs which are causing reflux - so they believe I have evidence of CCSVI.

Here come the questions...
1. CT Venogram/venography - Who can do this? If it's IRs do they need to know specific protocols? I am keen to get this done as it could show up problems with the Azygos and more details about the jugs!

2. What is the treatment for malformed valves? Angio? Stents? Vascular surgery? and who can do this?

Currently there is nobody offering anything more than a Doppler scan in the UK, so I'm wondering if it's worth taking this to my GP for referral to an IR or vascular surgeon or do I have to either go abroad or sit on the EHC waiting list?

Any nuggets of wisdom gratefully received TIA
Jay
x

Hey Jay

Mosy IRs will do a CT venogram in the same session as the balloon angioplasty although I have the feeling that the Essential Health Clinic plan to do them in seperate sessions, that's the case, isn't it?

I have been stirring up things in Rochester, New York for the SAME PROBLEM AS YOU!

The doppler of just the neck, (after giving them Zamboni's protocols) showed questionable "artifacts" in both IJV with a recommendation of MRV to confirm. Sounds good, right? So I send the IR the protocol for MRV with contrast dye.

I got an MRI, and later they tell me they need the contrast dye (HELLO - can you read?) and schedule it for ten days later. But the director says he doesn't know what my "PCP wants". I told him my PCP only knows what I am asking him to prescribe. It's on the protocols.

Then he suggested I check out Albany or Buffalo because they would be more familiar with CCSVI. So then I get Dr. Sclafani's article from Endovascular Today and check with radiology departments in two other local hospitals and a private location as well.

No luck... My problem I figured was the fact that they don't work on veins - only angioplasty (arteries). And how do you fix inverted valves anyway? Sinking into depression with a valium type prescribed drug - I wish I never knew about CCSVI. Then after two days of sadness, I was told that drug is a CNS depressant for RLS for me. I went off it and my mind opened up to new possibilities.

I then called Albany on July 23rd - and August 4th they scheduled me for an MRV October 14th, 2010 followed by a consultation. If they think they can do something, they will schedule catheter venoplasty 2 to 4 weeks later with balloons or stents if needed.

Oh one more thing ... I asked if they wanted my blood work that they did before they were supposed to use contrast dye, and Albany said they don't need it because it's very little they will be using. hmmmm ??? Fine with me - and they didn't want my doppler either! But I'm going to bring it anyway - along with the MRI of my brain in 2009.

Dr. Meridith Englander works with Dr. Siskin, so watching these posts and seeing his name... I'm thinking I've got a good one!

Don't give up - make yourself very visable - someone will tell you where to go!

Hi Dr. Sclafani,
Here's a question... I have read that the thoracic pump effect operates on inhalation to create negative pressure in the thoracic cavity to help draw blood down through the cerebrospinal veins and vena cava. With this knowledge, I have tried a little experiment. When laying down, I will take several deep diaphragmatic breaths in an attempt to maximize my blood return through my jugular veins. I should state that I have not been tested yet for CCSVI. The result of the experimental breathing so far is that I typically feel a pressure in my ears and in my neck (the latter is hard to describe but it is similar to what I get when I walk a couple of blocks). Can you offer an explanation for this result? Is it a sign that I might have a stenosis of some sort or is it a normal effect? If someone has cerebrospinal stenosis, would this type of deliberate breathing create more reflux and ultimately have a negative impact?

Thank you, NHE

Donnchadh wrote:

Nunzio wrote:
Hi Dr. Sclafani,
this is a side view of my jugular veins. The right one(on the left side of the picture) is obviously narrower.What concern me is that there are 2 collateral veins that take over right after the jugular vein exit the bony ostium.
I think they are collaterals because they insert at 90 degrees to the main vein.
1: Do you agree that they are collaterals?
2: Is it safe to balloon collaterals considering they usually are smaller and more fragile veins? Have you seen a similar situation in the past?
Thanks again for your expert opinion.

I am NOT a doctor (nor do I play one on TV) so my opinion is next to worthless.

After looking at your image, I am wondering if your IJV flattens and twists as it goes down???? Also it seems that there are collateral veins splitting off from the sigmoid sinus.

Donnchadh

Hi Donnchadh,
the picture shows a side view of both my jugular veins. The left one on the right side of the picture looks flattened but during catheter venography the IVUS did not showed any significant narrowing. The right one is the one I think has the collaterals and was ignored during my previous catheterization.
You can see a series of my images on page 191.
thanks for trying to help.

I have a question. I have MS but I also have factor 5 leiden deficiency (causes blood clots). I have already had a very large DVT in my groin, due to having a dropped foot and less physical activity.

Is CCSVi as suitable way for me to go. The reason I asked is that when this proceedure was first mentioned, I naturally put two and two together because I know I have issues with my blood.

I'd love to go for this, it seems a little too expensive for me right now, I have an autistic son and have to weigh these things up and I'm not totally confident in the way this is being introduced in the UK.

So, would someone who has Factor 5 Leiden, who has already had a major DVT and who is on Warfirin for life, benefit from this proceedure or am I counted out?

Hi DrS

What can IRs offer the restenosing (50%) CCSVI/MS patients who have reached the max number of venoplasties they can have? What do you think is next on the horizon for those patients?

Thank you!

~HP (Liberation date = this Monday, 8/9/10)

HappyPoet wrote:Hi DrS

What can IRs offer the restenosing (50%) CCSVI/MS patients who have reached the max number of venoplasties they can have? What do you think is next on the horizon for those patients?

Thank you!

~HP (Liberation date = this Monday, 8/9/10)

I will piggyback on HP's question and extend a little bit:

In one of the thread, I saw venous graft as a possible solution. Do you agree, Dr. Is this one of the surgical intervention?

Thanks ...

My goodness...I am really behind here. It is amazing how something so big can be so elusive. Sure, if I look for it, the amount of information is just about limitless. But I have only heard of it when someone mentioned it to my mom a few AFTER the MS walk. I never heard about it at the walk or anywhere else. Sad. Anyway, I supose any questions I have at this point are going to sound "duh", but this thread has gotten so big, I just feel a bit last.
I went from simply making an inquiry by email to a phone call asking if I would like to be scanned in less than a week. I have been scanned and have blockage in both Jugulars. As soon as insurance clears, I can have the venogram and have everything "fixed."

Does anyone have any idea of a timeline for how long the liberation could last? I know this is all new so there aren't many long standing examples...Just wondering.

Does it matter that they aren't both looked at at the same time? I will not be having them done at the same time and I have been explained what his reasons are and I understand. I was just looking to hear any other opinions.

Has anyone noticed a trend yet as to the level of improvement in correlation to level of disability? My symptoms are somewhat mild I guess, but there are a lot of them.

I see that a lot of people had a lot of frustration while waiting, and I can totally understand that. When the faint green light was given I can hear the sighs of relief of progress. For me, it has all happened so quickly and it is very overwhelming. I have been praying for something that I was convinced was impossible. Of course I want this more than anything, but I honestly don't know how to feel. When I talk about it outloud, I say I am happy. I guess I feel like I should be. But for some reason, I am really just complacent. And then I am totally upset with myself becuase I should be overjoyed. I'm working on it. Anyway, I appreciate the info and Dr. S's patience.

girlgeek33 wrote:First video and other postings can be found here:

http://www.facebook.com/pages/CCSVI-MS- ... 064?ref=ts

most are reposted here (full-length) on youtube

http://www.youtube.com/view_play_list?p ... 25816B8685

short url

http://goo.gl/l5ha

massive kudos to girlgeek33 for undertaking this huge effort and public service!

kaboodah wrote:Does anyone have any idea of a timeline for how long the liberation could last? I know this is all new so there aren't many long standing examples...Just wondering.

Does it matter that they aren't both looked at at the same time? I will not be having them done at the same time and I have been explained what his reasons are and I understand. I was just looking to hear any other opinions.

Has anyone noticed a trend yet as to the level of improvement in correlation to level of disability? My symptoms are somewhat mild I guess, but there are a lot of them.

These might be good questions to post also as a separate thread in the ccsvi forum, if you're looking also for everyone's answers and not Dr. Sclafani's only. But welcome and glad to hear you've gotten an appointment.

Greetings Dr. Sclafani!

As we're moving forward with this, I'm starting to wonder how many times the procedure can be performed safely. Is there a limit? Is there a limit to how many times one area can be ballooned?

I'm also curious about when the percentage of restenosis will decrease, as I'm assuming it will as more and more is known about CCSVI.

Have a wonderful vaca!