This Is MS Multiple Sclerosis Community: Knowledge & Support

[drsclafani]

we will be consulting a neurointerventionalist who has considerable experience with dural sinus stenosis that causes hydrocephalus. He is a disbeliever in ccsvi. he will remain anonymous for obvious reasons.

Would love to hear his take on it, alas, if only he were an open book too.

I am sorry to ask and no pressure but are you less inclined now to put up images and teaching examples as you have before, or is it just that you have been so busy? I enjoyed them.

things are really busier. i have to create a website, write some text, etc
but i have been waiting to see the MRV before showing this very interesting case study

[pklittle]

Liberation, I am an example, he used an 18 mm balloon on my right jugular which would be considered one of the extra large balloons except that he measured with ivus and it was rightly sized for that vein.

i am going to have to put some ivus movies on you tube for you to understand this. Yes, the valvular area is most commonly involved. It appears by ivus to be inability of the valves to open either by fusion or adhesion of the valve leaflets or developmental anomaly.

So when Cece states you "used an 18mm balloon" on her RIJV, that means in a valve within that vein, only the valve, correct? And you determined the size by using IVUS to measure a "good" segment of that vein.

[Liberation]

I am so confused.. is the current theory that ccsvi is a valve problem or not?

Yes, the valvular area is most commonly involved. It appears by ivus to be inability of the valves to open either by fusion or adhesion of the valve leaflets or developmental anomaly.

So, the stenoses of the vein does not mean a structural narrowing of the vein, it just gets less blood flow due to a narrow valve (narrow annulus or leaflet problems) and is this why it gets narrower? So if I solve the valve problem the narrowing of the vein will disappear? So this way, my purpose should be not to dilate and harm the vein walls only treat the valves?

Are there cases when there is stenoses without valve problems? I guess then the vein has not developped properly and I must stretch the vein wall; however, I do not know how successful that would be?

[Liberation]

If you think that the narrowing is due to scar tissue you will try to overdilate intentionally about20% to maximize the stretch of the scar.

Can scar tissue be the original cause of stenoses or is it a problem only after the operation?

you actually stretch it often to tear it. problem is that the scar reforms. So scar formation is to be avoided as much as possible. however its better than nohing at all and sometimes it remodels and lasts for a long time.

Can scar tissue goes away by time? Does it get healed or stays there for ever?

[Cece]

So when Cece states you "used an 18mm balloon" on her RIJV, that means in a valve within that vein, only the valve, correct? And you determined the size by using IVUS to measure a "good" segment of that vein.

I had valve problems on both sides. It was the valve that was ballooned, I should've said that more clearly.

How concerned should I be? I have my 3 mo. f/u with Dr Makris 5/3/11... thanks!

get a simple compression ultrasound to look for blood clot now.

And please let us know how it looks. Worrying....
(You know too that any IR can do a ultrasound check for a clot, it does not have to be a CCSVI IR.)

[Algis]

Another quick (and perhaps not helpful) question if I may Doctor: what is the actual status of synthetic blood? It might includes all the needs and benefits of natural blood while the veins/constrictions/stents/clots/whatever cures or get fixed/waived/straight; then we fill up again with the natural blood we stored??

Or something like that?

[Cece]

i have skepticism about these azygous stenoses.I think lots of them are phasic changes in th positionof the azygous. for example I have never seen a candhy wrapper.At this point you would think i would be seeing them too. Perhaps the difference is in the phase of respiration i image the azygous? Ivus also shows that many narrowings are phasic in the azygous

How would you interpret this image, from Dr. Zamboni's published endovascular treatment study? Is there a possibility that what's seen in (A) could be phasic? Even if it's phasic, would the reflux still be harmful?

Fig 3. Selective venography shows (A) a dramatic twisting of the azygous vein just below the arch with reflux toward the spine and (B) endovascular correction by stent insertion and reflux disappearance.

Anyone out there with a candy wrapper stenosis image who cares to post? Bonus pts if you know what phase of respiration it was imaged in....

[newlywed4ever]

drsclafani wrote:
newlywed4ever wrote:
How concerned should I be? I have my 3 mo. f/u with Dr Makris 5/3/11... thanks!


get a simple compression ultrasound to look for blood clot now.

And please let us know how it looks. Worrying....
(You know too that any IR can do a ultrasound check for a clot, it does not have to be a CCSVI IR.)

Thanks, Cece. I do know that I don't need the Zamboni ccsvi protocol but, good god, I can't seem to convey this to the local doc & her nurses. My GP has called AAC and is awaiting a call back. In the meantime, I am assuring the nurses that I'm not going to have a heart attack and they don't seem to have a clue what internal jugulars are...I love living in a rural area EXCEPT when it comes to medical issues...

[drsclafani]

Liberation, I am an example, he used an 18 mm balloon on my right jugular which would be considered one of the extra large balloons except that he measured with ivus and it was rightly sized for that vein.

i am going to have to put some ivus movies on you tube for you to understand this. Yes, the valvular area is most commonly involved. It appears by ivus to be inability of the valves to open either by fusion or adhesion of the valve leaflets or developmental anomaly.

So when Cece states you "used an 18mm balloon" on her RIJV, that means in a valve within that vein, only the valve, correct? And you determined the size by using IVUS to measure a "good" segment of that vein.

yes and no. Sometimes the vein above the obstruction dilates.If you measure that part you end up dilating larger than the area of obstruction. no, i measure the diameter of the veinwhere the valve is stenosed.

the balloon is larger than the valve sometimes so there is n aturally going to be inflation of the balloon in normal vein. The trick is to minimize the stretch of the normal vein while adequately dilating the narrowed valvular area.

simple, eh?

[drsclafani]

I am so confused.. is the current theory that ccsvi is a valve problem or not?

Yes, the valvular area is most commonly involved. It appears by ivus to be inability of the valves to open either by fusion or adhesion of the valve leaflets or developmental anomaly.

So, the stenoses of the vein does not mean a structural narrowing of the vein, it just gets less blood flow due to a narrow valve (narrow annulus or leaflet problems) and is this why it gets narrower?

the xray dye has to go through the valvular area. since the valvular area is narrowed, the xray dye column also gets narrowed. it looks like a stenosis caused by scar, caused by arteriosclerosis of an artery.....but the cause is so different.

So if I solve the valve problem the narrowing of the vein will disappear? So this way, my purpose should be not to dilate and harm the vein walls only treat the valves?

that is the goal

Are there cases when there is stenoses without valve problems? I guess then the vein has not developped properly and I must stretch the vein wall; however, I do not know how successful that would be?

there are also stenoses due to fibrosis and hypoplasia. we do not have data but i suspect that it might require more frequent dilatation.....but this is too premature. we are still attaining understanding of the nature of the stenosis.

and this is my theory based upon my interpretation of ivus....i am sticking my neck out

[drsclafani]

If you think that the narrowing is due to scar tissue you will try to overdilate intentionally about20% to maximize the stretch of the scar.

Can scar tissue be the original cause of stenoses or is it a problem only after the operation?

you actually stretch it often to tear it. problem is that the scar reforms. So scar formation is to be avoided as much as possible. however its better than nohing at all and sometimes it remodels and lasts for a long time.

Can scar tissue goes away by time? Does it get healed or stays there for ever?

you can get scar tissue from an infection or other inflammation. you can get scar from trauma, catheterization, angioplasty

scar is not likely to go away.

[tzootsi]

Dr. Sclafani, what do you make of this? Needless to say most CCSVI'ers are taking lots of D3.

http://onlinelibrary.wiley.com/doi/10.1 ... 0/abstract

[newlywed4ever]

Dr Sclafani,
I sent an email to you yesterday but your (pending) answer may also be of interest here. You treated my right IJV in the region of the confluence(left IJV was occluded/thrombosed since first angio which was treated by another dr). I am now experiencing swelling and tenderness on the right side of my neck. Normally, I would just think I have swollen glands but I'm a bit more concerned since I already have reduced blood flow due to LIJV. How concerned should I be? I have my 3 mo. f/u with Dr Makris 5/3/11... thanks!

get a simple compression ultrasound to look for blood clot now.

Update: got the simple compression ultrasound (although it was not "simple" to do so in Michigan's U.P.) and no blood clot was found - hurray! I am told it looks like a swollen lymph gland. Thanks Dr S and everyone else!

[drsclafani]

a new location for CCSVI was opened in Romania-Bucharest : DALIN MEDICAL ANGIOCLINIC

it is unclear why they exceed dr zamboni's criteria for ccsvi. they want more than two criteria. Most of us consider more than one criteria to be diagnostic of ccsvi.

hmmm

They list infection of the puncture site as a possible complication rate. Where did that come from? the Kahn editorial?

i havent found reports of infection of the puncture site in the literature.

hmmmm


they do not mention the name or qualification of a treating physician

hmmm

[drsclafani]

Dr Sclafani,
I sent an email to you yesterday but your (pending) answer may also be of interest here. You treated my right IJV in the region of the confluence(left IJV was occluded/thrombosed since first angio which was treated by another dr). I am now experiencing swelling and tenderness on the right side of my neck. Normally, I would just think I have swollen glands but I'm a bit more concerned since I already have reduced blood flow due to LIJV. How concerned should I be? I have my 3 mo. f/u with Dr Makris 5/3/11... thanks!

get a simple compression ultrasound to look for blood clot now.

Update: got the simple compression ultrasound (although it was not "simple" to do so in Michigan's U.P.) and no blood clot was found - hurray! I am told it looks like a swollen lymph gland. Thanks Dr S and everyone else!

called today. spoke to a non-physician. they never called me back

so relieved that this was a swollen gland..do you have a sore throat?

glad it wasnt a thrombus. so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief