DrSclafani answers some questions

[pklittle]

Dr. Sclafani,
Since each Dr. treating CCSVI seems to have their own twist (no pun) on how to test, pick the balloon size, etc, what advice would you give a patient that has been treated with venoplasty but had no relief of symptoms? More specifically, would it be worthwhile to seek treatment elsewhere by someone who is also experienced but who's approach is a bit different?
Pklittle

Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

i think that the next step is to determine whether there is or is not improvement in the Doppler results. If the Doppler is the same, i think another opinion is valuable. if the doppler shows eradication of the ccsvi criteria, then perhaps the brain damage is too great. but of course this decision is between patient and doctor

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?
I am glad to be having the test, but I am concerned because:
1) I don't know if the technician knows squat about CCSVI and how to check for it. I am having the test locally.
2) The local doctor to receive the results does not have a prior Doppler to compare it to.. so who's to say if it is the "same" as anything before or after angioplasty I had in June?

[patientx]

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?
I am glad to be having the test, but I am concerned because:
1) I don't know if the technician knows squat about CCSVI and how to check for it. I am having the test locally.
2) The local doctor to receive the results does not have a prior Doppler to compare it to.. so who's to say if it is the "same" as anything before or after angioplasty I had in June?

I don't want to answer for Dr. Sclafani, but it sounds like you would like an answer quickly. So, here's the little I know until the doctor has a chance to give a better answer.

Ultrasound can be used in various ways to look inside the body - using doppler is only one.

One way is using ultrasonic waves to create an image of what's inside - organs, blood vessels, etc. Ultrasounds given during pregnancy are an example of this. The "B-mode" ultrasound gives a two dimensional image, and can be used to look at blood vessels - to locate blockages or stenoses.

The doppler mode exploits the Doppler effect - the perceived frequency shift of a sound wave if the sound wave is reflected from a moving object, or if the sound source is moving (actually this applies to light waves also). You can hear the Doppler effect if someone blows his horn while speeding past you, or a moving train blows its whistle - the pitch of the horn or whistle changes. By looking at the sound wave reflected from the blood, and measuring the frequency shift, the doppler ultrasound can be used to measure the movement of the blood, both speed and direction. So, if there is reversal of blood flow, or reflux, presumably the doppler ultrasound should be able to detect this.

[drsclafani]

Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

i think that the next step is to determine whether there is or is not improvement in the Doppler results. If the Doppler is the same, i think another opinion is valuable. if the doppler shows eradication of the ccsvi criteria, then perhaps the brain damage is too great. but of course this decision is between patient and doctor

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?
I am glad to be having the test, but I am concerned because:
1) I don't know if the technician knows squat about CCSVI and how to check for it. I am having the test locally.
2) The local doctor to receive the results does not have a prior Doppler to compare it to.. so who's to say if it is the "same" as anything before or after angioplasty I had in June?

this is an extremely good point. i would not just get an ultrasound. it would be an ultrasound with color doppler and it must be done by someone who has experience and understanding of the zamboni techniques; i go on record that treating patients without setting up the methodology of using doppler ultrasound after the procedure needs to be addressed. Once could argue that one should not undergo this treatment unless one has attained connection with the ultrasound lab willing to provide the zamboni technique of ultrasound.

IT IS AN AREA THAT YOU NEED TO HAVE SOME ACTIVISM ABOUT. YOU, THE CONSUMERS, WOULD NEVER BUY AN ELECTRIC CAR IF YOU DIDNT KNOW THERE WAS A PLACE WHERE YOU COULD CHARGE THE BATTERIES.

WORK LOCALLY TO ASSURE THAT YOU HAVE A CENTER THAT WILL DO THAT. USE YOUR POCKETBOOKS AND WALLETS TO VOTE FOR ONE OR TWO LABS THAT WILL PROVIDE WHAT YOU NEED

okay, i can get off my soap box now

i know you are in a hurry, but

[drsclafani]

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?

b mode ultrasound bounces sound waves off the tissue and the echo is detected and captured and after undergoing some computer calculations, displayed as black and white images of the tissues.

doppler ultrasound, bounces waives off tissue and records the reflection as they move. this gives us not only morphological data but time related and direction related information about flow...this is called color flow imaging

so duplex sonography includes Bmode and hmodynamic information

[drsclafani]

Some treating physician recently described the sinan balloon inflation technique of discovering azygos vein malformation as Radiologic Braille. I didnt like the pergorative term but lets face it, we need to validate this. No one has ever done this in normal adults

It took me a while to understand it was pejorative. Braille is an invention that allows people with a disability (any people with disabilities around here?) to get information where they otherwise wouldn't! So when it comes to the azygous, if feeling around in the dark is the way to get information, it works for me. It just has to be determined if it's accurate information.

And, what, Dr. Sclafani is doing something no one has ever done before? We have gotten to know you well enough to not be shocked.

the doppler measures hemodynamic effects of abnormal venous return from the spine and brain. Abnormal doppler has been shown to be associated with azygos flow. Not to say that the doppler images the veins of the spinal cord anatomy. rather it measures the hemodynamics.

I hate feeling like I am wrong rather often here but I appreciate being set right. Thanks for your patience.

These are difficult decisions for people. They have spent considerable money, gotten disappointing outcomes and need to have some reason to double their financial hit without guarantee of improvement at this point. That is what i mean about the decision between patient and doctor

That's an extremely good point.

to a physician who dedicates his career to looking at images, being called blind is pretty perjorative.

[NHE]

to a physician who dedicates his career to looking at images, being called blind is pretty perjorative.

Hasn't it been said that surgeons see with their hands? Since you can't stick your hand in someone's vein, then using the balloon catheter in such a manner seems like the next best thing. Blind? Hardly. I would call it adaptive.

NHE

[drsclafani]

to a physician who dedicates his career to looking at images, being called blind is pretty perjorative.

Hasn't it been said that surgeons see with their hands? Since you can't stick your hand in someone's vein, then using the balloon catheter in such a manner seems like the next best thing. Blind? Hardly. I would call it adaptive.

NHE

I AM A RADIOLOGIST. I DO NOT DO SURGERY. I DO NOT EVEN HAVE A SCALPEL ON MY PROCEDURE TABLE

interventional radiologists use imaging and eye/hand coordination to treat patients mechanically and by medications delivered to remote sites often traveling within the vascular tree. we reach our destination, not by cutting through tissue but gently from within natural conduits that the body already has. We are not the only ones who do this, but our training is in imaging first. Our vision of the anatomy by ultrasound, fluoroscopy, CT and MRI allows us to do this precisely, often within millimeters.

we have also been called innovational radiologists. we develop techniques that are safe, minimally invasive and efficient. unfortunately for us and fortunately for our patients the techniques we develop are simple and other specialists take them up, threatening our livelihood. thus we are often forced to find new techniques to treat disease that are often helpless.

however our superior vision and visual training gives us a competitive advantage


so yes a radiologist might not react well to be called blind and requiring braille to see.

[pklittle]

i think that the next step is to determine whether there is or is not improvement in the Doppler results. If the Doppler is the same, i think another opinion is valuable. if the doppler shows eradication of the ccsvi criteria, then perhaps the brain damage is too great. but of course this decision is between patient and doctor

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?
I am glad to be having the test, but I am concerned because:
1) I don't know if the technician knows squat about CCSVI and how to check for it. I am having the test locally.
2) The local doctor to receive the results does not have a prior Doppler to compare it to.. so who's to say if it is the "same" as anything before or after angioplasty I had in June?

this is an extremely good point. i would not just get an ultrasound. it would be an ultrasound with color doppler and it must be done by someone who has experience and understanding of the zamboni techniques; i go on record that treating patients without setting up the methodology of using doppler ultrasound after the procedure needs to be addressed. Once could argue that one should not undergo this treatment unless one has attained connection with the ultrasound lab willing to provide the zamboni technique of ultrasound.

IT IS AN AREA THAT YOU NEED TO HAVE SOME ACTIVISM ABOUT. YOU, THE CONSUMERS, WOULD NEVER BUY AN ELECTRIC CAR IF YOU DIDNT KNOW THERE WAS A PLACE WHERE YOU COULD CHARGE THE BATTERIES.

WORK LOCALLY TO ASSURE THAT YOU HAVE A CENTER THAT WILL DO THAT. USE YOUR POCKETBOOKS AND WALLETS TO VOTE FOR ONE OR TWO LABS THAT WILL PROVIDE WHAT YOU NEED

okay, i can get off my soap box now

i know you are in a hurry, but

Thank you, thank you, thank you.

I went to bed last night worrying about this but your response is such a help. I am going to try to find out before I go in there if it is color dopplar by someone who knows about ccsvi/zamboni technique. Why waste my insurance money if it is not.
I'll let you guys know later how it goes.

[Cece]

so yes a radiologist might not react well to be called blind and requiring braille to see.

Being called blind = another thing you have endured for us

Got it. It's all in the context. I had a pm about this from someone thinking I'd given offense, so let me say, I honestly didn't take it as pejorative until it was explained, I think it's a difference of perspective. Around here, it is not an insult to use Braille or use a cane or anything of the sort, but it was used as an insult and that strikes home for us as well.

I've had some optic neuritis too, but never gone blind, but I don't feel safe in the way that people without this feel safe.

[nellie]

Dr. Sclafani,
I am soon to be checked & treated for ccsvi. I scheduled both the doppler ultrasound & mrv. Now I'm reading where Dr. Zivadinov is calling the mrv useless and the doppler only accurate if the radiologist performs it with the correct protocol. I know when Dr. Siskin emailed me he said neither test was necessary. The Dr. testing me said it was up to me on the mrv. He thought it was reasonable to skip it. What is your opinion on having the doppler and the mrv? Thanks, as always.

[Cece]

I've got pars planitis too. Another MS-related so-called-autoimmune eye disease. I'd make a lousy radiologist.

[1eye]

Golly. I had better start paying more attention. I thought he was referring to the pejorative use of the term 'Monkey Math'. Some of us monkeys get a tad upset, but I didn't think you meant offense. Really, I'm on your side. I think.

[pklittle]

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?
I am glad to be having the test, but I am concerned because:
1) I don't know if the technician knows squat about CCSVI and how to check for it. I am having the test locally.
2) The local doctor to receive the results does not have a prior Doppler to compare it to.. so who's to say if it is the "same" as anything before or after angioplasty I had in June?

this is an extremely good point. i would not just get an ultrasound. it would be an ultrasound with color doppler and it must be done by someone who has experience and understanding of the zamboni techniques; i go on record that treating patients without setting up the methodology of using doppler ultrasound after the procedure needs to be addressed. Once could argue that one should not undergo this treatment unless one has attained connection with the ultrasound lab willing to provide the zamboni technique of ultrasound.

IT IS AN AREA THAT YOU NEED TO HAVE SOME ACTIVISM ABOUT. YOU, THE CONSUMERS, WOULD NEVER BUY AN ELECTRIC CAR IF YOU DIDNT KNOW THERE WAS A PLACE WHERE YOU COULD CHARGE THE BATTERIES.

WORK LOCALLY TO ASSURE THAT YOU HAVE A CENTER THAT WILL DO THAT. USE YOUR POCKETBOOKS AND WALLETS TO VOTE FOR ONE OR TWO LABS THAT WILL PROVIDE WHAT YOU NEED

okay, i can get off my soap box now

i know you are in a hurry, but

Thank you, thank you, thank you.

I went to bed last night worrying about this but your response is such a help. I am going to try to find out before I go in there if it is color dopplar by someone who knows about ccsvi/zamboni technique. Why waste my insurance money if it is not.
I'll let you guys know later how it goes.

Update: I had the ultrasound done by an excellent individual. I haven't met with the IR yet to discuss the results or course of action, but I do now know that I have "restenosed", have a clot in an adjoining/extra vein(?), and do have a bunch of small collaterals in the upper left ijv area.
This is not at all what my left ijv was like 5 mos ago.

Now I understand why my MS symptoms have worsened since the angio in June. I hope I can be helped. I'll let you know more hopefully next week after I hear or meet with the IR (local).

[drsclafani]

Dr. Sclafani,
I am soon to be checked & treated for ccsvi. I scheduled both the doppler ultrasound & mrv. Now I'm reading where Dr. Zivadinov is calling the mrv useless and the doppler only accurate if the radiologist performs it with the correct protocol. I know when Dr. Siskin emailed me he said neither test was necessary. The Dr. testing me said it was up to me on the mrv. He thought it was reasonable to skip it. What is your opinion on having the doppler and the mrv? Thanks, as always.

nothing is completely useless but somethings are more useless than others. Since we are treating ccsvi, it is a good thing to have a test that diagnoses ccsvi before doing an invasive procedure. thus US makes the most sense since it is safe, relatively inexpensive, and reasonably sensitive in detecting ccsvi.
once we have an indication to puncture a vein, i am pleased to perform venography, make a diagnosis and attempt treatment.

[ClaireParry]

Hi Dr Sclafani,

I am going back to Poland on Weds as I am sure I have restenosed.

I have noticed on the email that they are now using cutting balloons, would you use these and what are the benefits/disadvantages?

Thanks

Claire

Its OK. Have found previous posts. Thanks.