DrSclafani answers some questions

[Rokkit]

both verts were abnormal.

2 different patients, or 1 patient?

[drsclafani]

A few TIMsers reported accessory nerve damage after stent placement high up in the IJVs: is this unavoidable ? Is balloon angioplasty safer for interventions high up there with regards to accessory nerve damage? What are the probabilities for the vein to stay open without stent placement in this location?

i have been told that if the flow in the jugular veins is obstructed lower down, then flow is diverted to the vertebrals and that leads to collapse of the upper part of the vein. At the level of the carotid bulb, and the high IJ near the skull base.

I didnt realize it when i first got involved with ccsvi but l am a quick learner. I was planning to treat the high ij on the kamikaze based upon a CT venogram but by the time he was scheduled for his procedure, i had learned and didnt treat that area.

I look at the area with intravascular ultrasound (IVUS) and watch it phasically increase and decrease is size, proving it is not real stenosis.

I am not saying that there are no occasions were a stenosis is seen there but i havent had to treat that area. That area is a really crowded one, with nerves and veins and arteries completing for space. i can imagine that stretching the nerve or compressing it by stenting could be a problem so i am very reluctant to stent that area

[drsclafani]

However, since she found out that this procedure involves going thru the heart she has become very apprehensive about having the procedure done. Other than her mild ms, my wife is in excellent health, and bikes an hour a day. However her father died at age 27 of a coronary, which is the cause of her concern. Are there any risks to the heart in this procedure?

All good things go through the heart
seriously, the catheter goes through the heart over a floppy guidewire. This is done for many reasons every day. I think it is very safe

[nono]

Dear dr. scalfani,

The Dutch discovered your wonderful answers to all of our questions!
Were so happy to read them here.
I don't know if my question has been answered yet , cant find it, so sorry if I ask again.

I had a treatment for CCSVI in Frankfurt (Germany) with dr.Vogl he ballooned a stenose in my left jugular and I became the photo's after the treatment.

They scared me , the balloon was way up in my neck and I asked myself what if the vein tears , a bleeding so high up could be dangerous I think.

So my question for you is : Is there a possibility a vein gets damaged during ballooning ? And if so , what can you do about it when it happens?

Dr. Vogl told me we took a great risk.
I'm very happy dough , the results of the treatment are great , many improvements so far!

thanks
Nono from holland

[Loobie]

One question I wanted to ask:

I'm a SP patient that got to Stanford early on. I had almost exclusive spinal involvement (lesions there only) for many years. Also, my bladder, bowels and bilateral leg issues also point to heavy spinal involvement. But, Dr. Dake had to liberate me twice since I was one of those 'extra valve that doesn't work' people and he chose not to do my one side the first time. My question is about the azygous. I had thought my azygous would be the biggie, but we spent extra time in the venogram, especially the second time, confirming that there is not stenosis in my azygous. I keep feeling like we missed something like the membranous stuff and other forms of flow blocking. Since Dr. Dake took extra time and injected die and said that there is just no issue there that I should try and find someone skilled with the Doppler to look for reflux there?

[Inge67]

Dear Doc,

Here's another Dutchie greatly appreciating your work! What a breath of fresh air you bring to this world, compared to all other skeptics! Thank you very much (it has been said before, but it can never be outed enough!).

Okay, here''s my question:

If I have a problem with valves, could a catheter venography detect this problem? Could a ballooning operation solve valve problems?


I give you some background about the reason of this question:

I was diagnosed by Dr. Vogl in Frankfurt with 70% stenosis in my Jugular.

This is what he said:

In the T2-weighted sequences an asymmetry of the Jugular vein is revealed on the left side. In the course the rightside is discretely denser.
Superior saggital sinus is regularlyperfused.
Ascending cerebral veins are regular.
Asymmetry of the flow is revealed. An increased flow can be detected on the left side of the digmoid sinusand the jugular vein.
The Jugular vein on the right sideis reduced in the lumen in contracts to the left side.
After application of contrast agentthe arterial perfusion is regular.
The internal and external carotis,the communal carotis and the vertebral artery are bilaterally equal.
In contrast enhanced saggital sectionsa discrete atrophy in the area of the cervical intumescence is revealed.
The azygous vein on the right sidecan be differentiated.
A stenosis of up to 70% of the lumenis revealed in the medium section of the jugular (IMA1, series 7).

I asked a second opinion by Dr. Simka (because I was worried Dr. Vogl did not discover everything in the MRI.)

He responded with the following statements:

I looked at the pictures. Unfortunatelly, imaging technique used gives little information about venous function, similarily, intraluminal structurescannot be well visualized. So, a pathologic valves or membranes that arethe most common problems in CCSVI most likely will not be found using this technique of imaging.

Such stenosis (according to our experience and also to the results from Buffalo) is most likely a collapse of the vein and not a real stenosis. There might be a stenosis in the lower part of this vein, but a such cannot be visualized with imaging techniques used.  In our centre we get most of information using 2D TOF and 2D FatSat imaging.

[patientx]

i have been told that if the flow in the jugular veins is obstructed lower down, then flow is diverted to the vertebrals and that leads to collapse of the upper part of the vein. At the level of the carotid bulb, and the high IJ near the skull base.

I didnt realize it when i first got involved with ccsvi but l am a quick learner. I was planning to treat the high ij on the kamikaze based upon a CT venogram but by the time he was scheduled for his procedure, i had learned and didnt treat that area.

I look at the area with intravascular ultrasound (IVUS) and watch it phasically increase and decrease is size, proving it is not real stenosis.

I am not saying that there are no occasions were a stenosis is seen there but i havent had to treat that area. That area is a really crowded one, with nerves and veins and arteries completing for space. i can imagine that stretching the nerve or compressing it by stenting could be a problem so i am very reluctant to stent that area

This is very interesting. It seems to be in keeping with what Radeck has been told by the various specialists he has consulted:

http://www.thisisms.com/ftopic-9905-15.html

According to radiology textbooks some narrowing of the upper jugular veins is physiological (normal). Collaterals in that area, and extra narrowing, could in principle be caused by problems further down, such as the ones Zamboni and Simka are diagnosing and treating.

It seems this is what others may be seeing:
http://www.thisisms.com/ftopic-10028-da ... asc-0.html

[HappyPoet]

.

I look at the area with intravascular ultrasound (IVUS) and watch it phasically increase and decrease is size, proving it is not real stenosis.

Brilliant!

Should become S.O.P. (a pun for you).

~HP
.

[drsclafani]

drsclafani wrote:
I look at the area with intravascular ultrasound (IVUS) and watch it phasically increase and decrease is size, proving it is not real stenosis.

Brilliant!

Should become S.O.P. (a pun for you).

~HP

is there a question?

wow, that is quite an incisive pun!

[Johnson]

drsclafani wrote:
I look at the area with intravascular ultrasound (IVUS) and watch it phasically increase and decrease is size, proving it is not real stenosis.

Brilliant!

Should become S.O.P. (a pun for you).

~HP

is there a question?

wow, that is quite an incisive pun!

And so was that - intended, or not...

[drsclafani]

I still wonder though if the better results are coming from those treated for higher stenosis at Stanford. Dr Dake saw on my MRV that my veins were flattened at C2. When I went to Poland I had an area of stenosis lower down on the left as well (also seen by Dake) but the right was untouched. Now I have been told there are issues with the right and I am wondering whether I just need both sides treated at C2.

LR1234
I am happy to discuss the merits of your post, but it gets a little sticky to be advising you personally on the forum, without a formal consultation. One doesnt get the real flavor of other physicians rationale from such short messages and without analyzing the imaging.

So let's try to stay theoretical for the moment.....

I am not aware of long term results other than Dr. Zamboni's article on clinical outcomes. I do not know that treating higher stenoses at Stanford will result in better outcomes. I do not know the incidence of cranial nerve trauma associated with high angioplasty or stenting. So we will just have to see. Frankly, as i have said before, so far all the high narrowings are dynamic and the vessel expands and closes down. I think that assessment of upper narrowings should only be done after the central obstructions are relieved. Then we can tell if there is something substantive.

Anyway, maybe my idea of intravascular ultrasound is brilliant! I've had the instrument for many years and didnt find a really good use for it, so I tried it here and it really makes me feel comfortable with my diagnoses.

[fernando]

Dr.

Thank you very much for sharing your time and knowledge with all of us.

My questions

1) Am I correct believing that you consider CCSVI as a real entity that potentially could harm the patient solely by itself ? (I'm not saying that CCSVI causes MS).

2) You said that you saw veins as you never had seen before. Could you elaborate further, please?

3) How long will it take for this intervention to become accepted by the health systems? years, decades?

Thank you very much!

Fernando

[fernando]

Intravascular ultrasound
From Wikipedia, the free encyclopedia

This article needs additional citations for verification.
Please help improve this article by adding reliable references. Unsourced material may be challenged and removed. (September 2009)
Intravascular ultrasound (IVUS) is a medical imaging methodology using a specially designed catheter with a miniaturized ultrasound probe attached to the distal end of the catheter. The proximal end of the catheter is attached to computerized ultrasound equipment. It allows the application of ultrasound technology to see from inside blood vessels out through the surrounding blood column, visualizing the endothelium (inner wall) of blood vessels in living individuals.
The arteries of the heart (the coronary arteries) are the most frequent imaging target for IVUS. IVUS is used in the coronary arteries to determine the amount of atheromatous plaque built up at any particular point in the epicardial coronary artery. The progressive accumulation of plaque within the artery wall over decades is the setup for vulnerable plaque which, in turn, leads to heart attack and stenosis (narrowing) of the artery (known as coronary artery lesions). IVUS is of use to determine both plaque volume within the wall of the artery and/or the degree of stenosis of the artery lumen. It can be especially useful in situations in which angiographic imaging is considered unreliable; such as for the lumen of ostial lesions or where angiographic images do not visualize lumen segments adequately, such as regions with multiple overlapping arterial segments. It is also used to assess the effects of treatments of stenosis such as with hydraulic angioplasty expansion of the artery, with or without stents, and the results of medical therapy over time.

[drsclafani]

If I have a problem with valves, could a catheter venography detect this problem? Could a ballooning operation solve valve problems?

The catheter venogram has the precedent of being considered the gold standard imaging test of the anatomy of the veins. Flow issues can be assessed subjectively but other tests, such as ultrasound and MRvenogram should be more accurate for specific velocity and flow rates.

There has never been a blinded study comparing the accuracy of ultrasound, MRV and catheter venography. Thus we must presume that Catheter Venography remains that gold standard until such time as head to head (or should i say neck to neck) comparison is made.

Venography is the injection of opaque contrast media (dye) into the interior of the vein. The dye outlines the walls and the structures inside the vein. It says nothing about the wall of the vein itself. When the vessel is narrow, the dye column also appears narrowed. The cause of the narrowing can be stricture or developmental narrowing, a big thick valve protruding away from the wall, or other abnormalities like twists. sometimes you can see the thickening moving in and out suggesting that it is a valve.

Sometimes the webs and valves are too thin and very difficult to recognize. This is especially true if the dye is too dense.

So even the gold standard is unlikely to be 100% accurate. Only way to tell that is to compare venograms to their gold standard, which is examination of the tissue by a pathologist. AND WE DON'T WANT TO DO THAT, DO WE

i got to go, late for meeting

[Cece]

Anyway, maybe my idea of intravascular ultrasound is brilliant! I've had the instrument for many years and didnt find a really good use for it, so I tried it here and it really makes me feel comfortable with my diagnoses.

Agreed, that is brilliant; who knew there even was such a thing! And tiny enough to pass through the heart like the rest of the procedure.