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Dr. Sclafani,


Thank you for that explanation. Could the CT-V be giving false negatives?

I'm wondering why a neuro would prefer to use CT V scans with MS patients as opposed to an MRV?

Rosanna

perhaps the mr magnet available to them is not good enough. perhaps they have more comfort with mrv

the problem is that neither is particularly accurate and neither evaluates adequately the azygous vein. More and more , i think that catheter venography is the diagnostic test of choice.

I hope you don’t mind that we contact you, because you do have a lot of knowledge what is going on. I wonder if you have heard before that a balloon or stent could not be used because the vein was completely blocked. If you have heard about a treatment to solve this, I hope you can inform me about this possible treatment.

perhaps it is a long standing thrombosis of the vessel. given pain, that is what i would suspect first.

thought I'd throw in a question about vein elasticity.

I underwent a procedure recently. I had an extremely narrow left IJV, with a stenosis which started high and penciled halfway down my neck. The IR did subtle ballooning, as was concerned that if he used a larger balloon the vein may rupture. In the end, there was still some filling of the vertebral vein.
I expect I’ll need another procedure in the near future. Is it possible to achieve more satisfactory ballooning the second time round? Now I’ve been ballooned subtley…maybe it will be possible to use a slightly larger balloon in the next procedure – so incremental dilation of this very narrow vein. Or will I be confined to minimal ballooning in subsequent procedures as the vein elasticity doesn’t change?

best regards, Helen

You did not mention the status of the other two major veins.

Of course I would have to see the study to know for sure but i still believe that most of the real problemls are down at the base of the jugular vein and that these narrowings above are dynamic and that the wall of the vein is indeed still elastic.

Iwonder whether your IR could get the balloon to expand fully. if so, then perhaps your narrowing is not real

I was also told that they do not want patients to fly home after the procedure. But, you should ask for yourself since this may have changed.

let me clarify. we do not want people to fly home after the procedure but to wait around for a day or so.

I do not want anyone driving back long distances or walking home

Dr. Zamboni, with many years of experience and careful thoughtful research, discovered that the narrowings that led to the problem were ALL low in the vein near the subclavian vein.


Dear Doctor Sclafani, can you please clarify? I thought that stenosis is to be found anywhere down the jugulars and also in the azygos. In fact Dr Dake has found problems high, at about ear lobe level.
In my case, (always according to the radiologist) doppler showed severe stenosis in both IJVs but mostly in their middle part in all positions. Supine, 45 degrees and 90.
In fact the only part where some flow could be seen (that blue particles i suspect) was at the lower part, near the subclavian vein Shocked
Did i missunderstand your reply ?

I think that i stand by those words. i understand that this is a very confusing issue and i wish i could explain it better. perhaps i can post a picture to explain.

It is very true that narrowing of the upper vein is a common observation. However i think that this narrowing is mostly a function of underfilling rather than fixed stricture. When I do IVUS it is clear that these veins can dilate. That is why i think that IVUS is so valuable and why i have not get treated a high narrowing yet. We see that the narrowing changes in appearance. This past thursday i saw a very narrowed azygous vein. I actually started to believe that "this one must be a real narrowing". however after angioplasty of the central part of the vein, the venogram showed that the distal vein had indeed increased in diameter on its own.

However I want to emphasize that I have not seen mike dakes cases or procedures so I am not saying that his cases were not real stenoses.

I hope you don’t mind that we contact you, because you do have a lot of knowledge what is going on. I wonder if you have heard before that a balloon or stent could not be used because the vein was completely blocked. If you have heard about a treatment to solve this, I hope you can inform me about this possible treatment.

drsclafani wrote:perhaps it is a long standing thrombosis of the vessel. given pain, that is what i would suspect first.

Dear Dr. Sclafani,
The vascular surgeon called it exactly a long standing thrombosis of the left internal jugular vein. Something we expected because of the MS.
He tried a recanalisation. This was not succesfull. Are there other possible treatments for liberation if setting a balloon or stent are not possible?

.

Dear Dr. Sclafani,
The vascular surgeon called it exactly a long standing thrombosis of the left internal jugular vein. Something we expected because of the MS.
He tried a recanalisation. This was not succesfull. Are there other possible treatments for liberation if setting a balloon or stent are not possible?

i would have to see the imaging at the least to make an intelligent answer.

were there no other lesions?

your stated intention was to make the vein more pliable to expand more effectively but is it also possible that the indentations might form scar tissue and the rigidity of scar tissue might help hold the vein walls out over a longer period? I suppose similar to the idea of dissolving stents?

no, scar tissue is bad. it is like a tight rubber band.

Most of these narrowins are NOT due to scarring of the vein, like you have scarring in your brain. These neck veins show no evidence of inflammation, according to Dr Zamboni. The narrowed veins are a congential abnormality.

I think that i stand by those words. i understand that this is a very confusing issue and i wish i could explain it better. perhaps i can post a picture to explain.

i made a good composite image to explain the transient nature of upper vein narrowings.

I have a question: can anybody show me how to upload it for your viewing?

offline answer would be useful

thanks

Dear Dr Scalfani, thank you VERY much!
I dont know how to upload images. I really hope that someone will help us asap.
You understand that this is very critical for me since i ve been "diagnosed" with severe bilateral stenosis in my IJVs in all positions. There was simply no flow. I have to say that near the subclavian vein the picture was better.
I have already seen the images in the Zamboni papers and i think i know what you mean though. Those pics show the problem you describe.

Anyhow, the radiologist told me that my veins have no relation with what he has been seing in healthy peoples dopplers. Let's hope he is right.

.

drsclafani wrote:Most of these narrowins are NOT due to scarring of the vein, like you have scarring in your brain. These neck veins show no evidence of inflammation, according to Dr Zamboni. The narrowed veins are a congential abnormality.

I was wondering if you could elaborate on that a little more. Are the stenoses a defect in the structure of the vein, where it "funnels down" or narrows at one point? Or is it the buildup of tissue on the inside of the vein wall? Or something else?

Thanks.

I was wondering if you could elaborate on that a little more. Are the stenoses a defect in the structure of the vein, where it "funnels down" or narrows at one point? Or is it the buildup of tissue on the inside of the vein wall? Or something else?

Thanks.

Firstly, not all resistance to flow is caused by stenosis (narrowing).

Narrowing can be secondary to
1.hyppplasia,or failure to grow to proper sized
2. extrinsic compression by a duplicated vein
3.transverse webs of tissue acting like a lid on the vein
4. or septum that divides the tube (jugular) into two smaller tubes
5. A diverticulum that compresses the vein
6. by valves that are stiff and do not open and close properly
7 valves made of several leaflets that end up fused together
8 valves that are located in abnormal locations

Almost all of these narrowings occur near the confluens of the jugular vein with the subcclavian where valves are seen normally in about 85 per cent of patients. Problem is these valves are highly dysfunctionally developed in patients with MS. I think the IVUS really shows this really well.The venogram shows narrowing but the IVUS shows that the narrowing is valvular.

These narrowings are not inflammatory strictures and they are not "buildup of tissue on the wall of the vein (sort of like plaqeu).

My guess is that this is maldevelopment of the valves in the fetus.

There are other malformations of veins that are well known. They include problems with the veins of the liver as they join the inferior vena cava. This well known entity is called Budd Chiari syndrome and results in major problems of the liver.

drsclafani wrote: It is very true that narrowing of the upper vein is a common observation. However i think that this narrowing is mostly a function of underfilling rather than fixed stricture. When I do IVUS it is clear that these veins can dilate.

This corroborates our experience so far. MRV showed bilateral narrowing in two areas of the jugular, ultrasound showed the lower jugulars both measuring apx 1mm in diameter; however, when doing valsalva these veins were in fact able to dilate to the normal range. Definitely no fixed stenosis in the areas checked by MRV and Ultrasound, points to some other location as the problem. We've responded to Holly's questionnaire and hope to be scheduling an appt for sometime in the coming months with you Dr Sclafani.

Not sure if this is a question you can answer...why do you think Neurologists are reluctant to let their patients get tested and treated for CCSVI? I wouldn't go to a neurologist to treat a broken leg, and they wouldn't get in the way of that broken leg getting treated. Why so different with CCSVI?