This Is MS Multiple Sclerosis Community: Knowledge & Support

I would like to re-iterate that question. The local sonographer told me that my sonogram was normal - that the weird valve stuff going on, the reflux in the colour Doppler, the distinct narrowing of the IJV proximal to the clavicle were pretty normal. He has seen things like it before - like in all 100 PwMS he has scanned! He did concede that the lack of collapse of my IJVs when erect was abnormal.

I do tend to go on, but, as blueskies asked, ought we to be confident that any competent vascular surgeon, interventional radiologist, etc., would see bad valves, stenosis, etc., as something to be treated? There was the doctor in Australia who went in, and backed out without treatment.

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My name is not really Johnson. MSed up since 1993

I want to re-visit Dr. Sclafani's post since it isn't every day that we hear about new insights in treatment. Thanks Dr. S. for sharing this with us:

"Today I learned something new in my treatments. I thought i would share.

I have been concerned about incomplete dilatation of the veins when using venous angioplasty, expecially when i think the problem is incompletely opening valves. Sometimes even with very large balloons, i have been dissatisfied with the amount of widening i achieve.

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.

Is this a consistent benefit? Is there any new risk? Will this reduce recurrent stenosis?"

My one thought concerned the health of the lining of the veins. If the endothelial lining isn't strong and you put sharp little edges in it, could it weaken the vein? I'm not trained in the sciences so my apologies if this question is a foolish one. (P.S. I'm on your list as well.)

Patrice

Dr. Sclafani,
Please clarify something for me. When someone talks about a vein narrowing by 50%, are they talking about diameter or area ? (I'm doubting it's circumference). Is this standardized in the medical community or should I liken it to marketing (Say whatever to sell something) ?

Talking in general terms for ease of math, a tube that is 1" in diameter is half the diameter of a 2" tube. The area of a 2" tube is much larger than twice that of a 1" tube.

It makes a big difference when we are talking about something this critical.

Larry

Wow, things were pretty quiet for a few days other than discussions about bed inclination so i thought that the questions were dying down, that i had answered all the questions. How i underestimate your thirst for understanding

IRs talk about narrowing in percentages. We can speak about the percentage of the diameter or we can speak about the percentage of the cross sectional area. Area is more accurate.

its been a long time since geometry, but area is πr2. No, i am not a nerd. Let me translate for those non-nerders the area of a circle is 3.14 times the radius times the radius(r squared)

so if the vein above the narrowing measures 12 mm and the narrowed area measures 6mm , then the percentage of narrowing is 3.14 x 3 x3 divided by 3.1 times 6 times six or about 28 divided by about 100 or about 72% narorowing. Some will speak about 6/12 or 50% narrowing of the diamter but cross sectional area is most important.

after all in said, actually be careful that your doctor does not define comparison to normal based upon the findings commonly seen in atherosclerosis where 70% narrowing is considered significant. Because of the low pressure changes in cross sectional diameter are exagerrated.

No question is a foolish one.... otherwise it would not be asked.

i did one case! you have got to be patient as one case is only a glimmer. We need more data to answer your question. otherwise it is just opinion.
my opinion is that the vein looked like flow was enhanced.

with regard to weakening the wall, that is absolutely true. The malformation of the vein is generally stiff and that stiffness prevents distension of the vein. the cutting balloon just makes it easier to dilate the vein...I will keep you all informed of this

would you trust a air traffic controller on his first day on the job?

i think that the procedure is the easy part. the hard part is determining what is abnormal. its not like a clown comes out and dances around with a placard that says " Hi, i am abnormal. please come treat me."

so the answer to your question is yes, it makes a difference. I am far better now than during my first case....sorry angel. Everyone should go to zamboni, but alas he is way too busy. most patients getting the procedure done in the US are pioneers. if you dont have the courage to take on that role, then wait it out.

i would be skeptical about the degree of expansion of the vessel/ I would also doubt that the venogram was interpreted correctly. I would put an ivus in to see whether there was a something subtle and ultimately if i found nothing else, i would perform angioplasty. no sense not giving it a chance

if you cannot laugh at yourself, you might as well take a sabbatical.

Of course it is better to work with an experienced IR. all two of them. it is very critical to work with someone of experience. However we are all pioneers and if you can have the courage to take a chance, then work with the "good doctors" to get through the learning curve. pay it forward

jcakes
prone means lying on your stomach, supine means lying on your back. both should improve blood flow in the jugular vein in the normal patient
i cannot tell you how that would affect blood flow in a patient with MS

i would suggest that it means that someone feels very passionate about the topic
keep the focus but be compassionate of others who write here

there are many ways that doctors receive information
in the case of ccsvi is is so new that word of mouth and ad hoc phone advice, peer to peer discussions are really valuable. internet is helpful, not only for the data, but also for understanding of patient experience. That is why i searched until if found this site. you all have taught me a lot.

Dr. Sclafani,

Thank you for the quick response.

yes


however research in children is more difficult because the patient cannot advocate for themselves and thus research requirements are more stringent.

I have already begun the process of stimulating pediatricians and ophthalmogy into this topic

Hello Drsclafani,

I am due to go to Poland in May and was wondering about stents as I have an allergy to metal. I emailed Euromedics to find out what they were made from and they replied saying that they were made from Cobalt.

I think that I am allergic to Nickel but am not 100% sure, can you advise me as to what to be asking? Maybe I need a blood test to see what it is exactly that I am allergic to, if so I can ask my GP?

I would still be happy to go for ballooning, but would prefer the stents as they seem to be lasting longer, I don't want to go and then have to return in a few months.

This is all pure conjecture as I don't even know if I have stenosis, but I get the feeling that I have. I just like to know what my options are.

Thanks Mags