DrSclafani answers some questions

[drsclafani]

i couldnt resist

I WANT TO CLARIFY THAT DR SCLAFANI ONCE TOLD ME THAT PART OF THE CERVICAL SPINAL CORD DRAINS INTO THE JUGULAR VEINS VIA A COMPLICATED VASCULAR SYSTEM AND THAT WAS ALL.
WHAT I HAVE WRITTEN IN THE CAPTIONS IS ONLY MY OWN HYPOTHESIS AND NOTHING MORE THAN THAT.











Dear Dr Sclafani, do you think that balloon dilation could fix such kind of malformation and hold? To my untrained eye it looks like the jugular vein has no obvious extend under the twisting...
I was ballooned down there alright, but i cant find any after images in my cds...

my interpretation of your venography is somewhat different from yours

1. the catheter is not positioned in the upper jugular vein, but in the middle
2. the catheter tip is inside the collateral, thus driving the contrast media into the collaterals
3. The central portion of the IJV is not visulalized
4. what you point to is not the IJV
5. I do not accept the twist
6. i do not accept the membrane in the small vein
7. these veins are anterior, your spine is posterior

perhaps you did not show the best images of the jugular vein. Perhaps they did venoplasty at the confluens based upon collaterals

it is very difficult to interpret these images because of the way they were taken and the way you have edited them.

[drsclafani]

I apologize if this has come up before. Wading through this entire thread is a bit overwhelming!

Has anyone heard/read anything re any contra-indications for CCSVI treatment? Are there any medical conditions that make either venograms or angioplasty high-risk or not possible? E.g. asthma, problems with venous flow in lower legs and feet, recovered cancer patient, diabetes, surgical implants, etc. Any specific allergies that are of concern? This is a collated list from several MSers, not all from one person!

I am sure many of use have had the thought - what if I finally get my turn and they exclude me because of "x" in my medical history.

Thanks!

The contraindications to this procedure include
1. pregnancy (fetal irradiation)
2. renal insufficiency Grade 3 and higher, especially when associated with diabetes mellitus. (Procedure can be done but with higher risk) Once on dialysis, not contraindicated.
3. history of life threatening allergic reaction to xray contrast media
4. IVC filter (might be possible via alternative route (see nunzio comments about alternative locations for access of veins
5. pacemaker wires (relative)

[drsclafani]

I apologize if this has come up before. Wading through this entire thread is a bit overwhelming!

Has anyone heard/read anything re any contra-indications for CCSVI treatment? Are there any medical conditions that make either venograms or angioplasty high-risk or not possible? E.g. asthma, problems with venous flow in lower legs and feet, recovered cancer patient, diabetes, surgical implants, etc. Any specific allergies that are of concern? This is a collated list from several MSers, not all from one person!

I am sure many of use have had the thought - what if I finally get my turn and they exclude me because of "x" in my medical history.

Thanks!

The only thing I have heard of from anyone being told they could not have the procedure is someone with a clotting disorder. Dr. S, is there anything they can do to go ahead with this in someone with clotting disorders?

I have also read about those with allergic reactions to the dye that is used, depending on how bad the reaction, they can use some meds in advance to avoid it. It may be that some extreme allergic reactions to the dye, may not allow someone to undergo the procedure since the dye is a must...

Hope this helps..

good pickup. I left that off my list. Inability to clot is a contraindication but this is relative contraindication and usually can be corrected by stopping anticoagulation or giving the patient the clotting factors they are missing.
Perhaps we can do this procedure without contrast media by using the IVUS for guidance. Perhaps with more experience I would try it

[bluesky63]

Hi again Dr. Sclafani. I am sorry to keep asking questions but I don't think I saw an answer to this in the approximately three thousand pages of this amazing thread.

You are incredibly patient with our questions and I am learning so much -- I am wondering about the sinuses vs. the veins and how they might relate to all this.

My MRV from Stanford said "arachnoid granulation in the left transverse sinus." I saw someone else here with the same finding. Is that something significant or incidental, like so many things on reports? If it is significant, is it something that gets addressed in a venogram?

And is a venous angioma something that gets addressed in the same procedure? It's all veins to me. Any insight from the real experts is gratefully welcomed.

[costumenastional]

1. the catheter is not positioned in the upper jugular vein, but in the middle
2. the catheter tip is inside the collateral, thus driving the contrast media into the collaterals
3. The central portion of the IJV is not visulalized
4. what you point to is not the IJV
5. I do not accept the twist
6. i do not accept the membrane in the small vein
7. these veins are anterior, your spine is posterior

perhaps you did not show the best images of the jugular vein. Perhaps they did venoplasty at the confluens based upon collaterals

it is very difficult to interpret these images because of the way they were taken and the way you have edited them.

Dear Dr Sclafani. Thank you so much for giving a correct interpetation of those images. I am so humbled by my serious mistakes and grateful you are here to correct me so everyone can see. I am glad i showed these to you.
Even so, is it normal for the dye to go like i describe? i know the collaterals are not the issue here but the flow is going exactly like i describe.
THANK YOU VERY MUCH.

[drsclafani]

Dr S. The last thing I want to do is waste your time but I got to ask you to listen to this its a radio Interview with the great Dr. Freedmen the head of neurology I believe in Canada. Dr. Freedmen has to be the biggest Skeptic for CCSVI It is remarkable what kind of trash that comes out of his mouth in-regards to scanning,treatment, investigation, people dieing from treatment, and so on


The best part is he tries to explain what Drs in your field should be doing
Thats like a car Mechanic (DR Freedmen) trying to tell a Airplane Mechanic ( Dr. S) the best way to change the brakes on the plane.

He speaks about one person dying yet does not even mention the fact the Tysabri has killed well over 50 people giving them PML

So by all-means DR. S here is the link to the site with the audio link on the right hand side
http://www.am770chqr.com/Blogs/RobBreak ... D=10111605


Hey Dr. S thanks ahead of time for listen to it I am far from a Doctor but will give you this small piece of advice take small Deep breaths while listening to his rants haha Lol

Dear johnnybaby

I avoided dr Freedman's words for a long time because of his arrogant patronizing tone. Now that I have actually heard him, He is quite persuasive. Thus based on this interview, I have realized that only a neurologist knows what is best. Therefore I have decided to abandon all work on CCSVI and begin a course of treatment with Tysabri for myself and all my family and friends



just joking, just joking.

Actually, I did think that he came off as condescending and patronizing. I was displeased that he exaggerated the data to favor his point of view. 22% morphed into a third and 62% morphed into less than half.. His description of the procedure as dangerous is unfounded, and unfairly frightens patients, giving a distorted view of risks. Thankfully he did not stay on the venipuncture as a source of infection mantra of the past.

On the other hand, I agree with him that we do not have the data to go at this without investigation. Word of mouth is not adequate. We hear the glowing stories. Does that mean that patients would be as willing to talk about the failures? I am not sure

Dr. Z and I and many others in the IR community believe that this is an unproven hypothesis with some encouraging results. Dr. Zamboni has advised patients to participate in trials rather than not.

I fully empathize with patients who fear progression and want this immediately. If I were an 'MSer I would be looking for someone to treat me. However as trials get up and going, patients have some responsiblity to participate in these. Just as Zamboni's patients chose to participate, not only for their own benefit but for that of all MSers, so too should you join those trial to prove the points about which you feel so passionate .

Now, let's get back to work, designing some studies and proving this for all.

[Algis]

Now, let's get back to work, designing some studies and proving this for all.

That's my Doc! Way to go; thanks for your good sense

[bluesky63]

About contraindications to the procedure -- I was concerned about Ehlers-Danlos and the ballooning. I saw an expert in veins (who shall remain nameless because I do not have this person's permission to post his name but trust me, he is both an expert and conversant with CCSVI).

He explained all about how veins are formed and why the ballooning would be OK even with something like a collagen defect, in exquisite detail. I felt bad that he was being so nice but with my processing problems it didn't really register. It was kind of like the Far Side cartoon in which the owner is talking and Ginger the dog hears, "Blah blah blah blah Ginger blah blah Ginger blah blah blah blah." Except for me what got through was "veins veins veins veins you'll be fine veins veins veins don't worry veins veins veins relax."

Not sure how helpful that was but hey, always trying.

[costumenastional]

I dont think there is something serious here doctor. I am a edss 2 before you ask One more time, forgive me for my ignorance...
I must insist though: in the previous set of pics, would you speculate that it goes up maube because this collateral vein is not designed to take so much blood/dye in? It's kind of spectacular when you see it in the video.
How come the collateral is so wide?
Lots of questions i know, but it s too wide for some reason, wouldnt you say?

[drsclafani]

About contraindications to the procedure -- I was concerned about Ehlers-Danlos and the ballooning. I saw an expert in veins (who shall remain nameless because I do not have this person's permission to post his name but trust me, he is both an expert and conversant with CCSVI).

He explained all about how veins are formed and why the ballooning would be OK even with something like a collagen defect, in exquisite detail. I felt bad that he was being so nice but with my processing problems it didn't really register. It was kind of like the Far Side cartoon in which the owner is talking and Ginger the dog hears, "Blah blah blah blah Ginger blah blah Ginger blah blah blah blah." Except for me what got through was "veins veins veins veins you'll be fine veins veins veins don't worry veins veins veins relax."

Not sure how helpful that was but hey, always trying.

bluesky
never heard of ED being a contraindication to angioplasty. For those men out there, ED stands for Ehlers Danlos... Actually ED is sometimes an indication for angioplasty for those men interested in such things

don't be too concrete in your thinking. it is just sal trying to make plays on words.

[Cece]

When my daughter was young, and subjected to me this question while on trips, I used to answer: "Halfway."

Nowadays the kids are so busy watching movies in the minivan, they never ask!

I remind you, that having the procedure is only one part of this treatment. There is much followup necessary.

Yes, point taken...and, after all this, I would like to meet you and I have a lot of confidence in the job you would do.

[drsclafani]

I dont think there is something serious here doctor. I am a edss 2 before you ask One more time, forgive me for my ignorance...
I must insist though: in the previous set of pics, would you speculate that it goes up maube because this collateral vein is not designed to take so much blood/dye in? It's kind of spectacular when you see it in the video.
How come the collateral is so wide?
Lots of questions i know, but it s too wide for some reason, wouldnt you say?

That collateral is significant because it indicates that there is an outflow obstruction. I do not think it is that large by the way. In another ten years it might be large.....but by then you would possibly be EDSS 5. I think one reason the collateral flow is so impressive is because the catheter tip is directly into the orifice of the collateral. It will push the contrast through the path of least resistsance.

unfortunately the views of the outflow at the confluens are just not the best.
Nor is the imaging of the Azygous vein (spelled correctly, i might add!) partaicularly good. Image quality is weak and the view is not a profile view of the arch of the azygous.

I am very impressed with the "waist" on the balloon of the upper jugular. I wasnt expecting that!

let us know how your next doppler looks

s

[RedfernTO]

Thanks all for your responses re contra-indications.

[L]

Hello Dr Sclafani

I'm on your list, perhaps things will be a bit tricky though as MRV is contraindicated with me (unless it is less powerful than MRI) because of the inch long end of a defibrillator wire in my heart. The defibrillator itself was explanted as it was quite unnecessary, placed there by an over zealous cardiologist.

Apparently, according to Dr Halperin at Johns Hopkins who has conducted a study on the subject of MRI and pacemakers/defibrillators, and who kindly responded to my enquiries and the x ray of me that I sent him, told me that such a short lead would heat far more than the whole defibrillator intact and would not allow for an MRI scan.

So my question now is, aside from the strength of an MRI being the same as an MRV or not, A doppler scan, although not as useful as an MRV, is still very helpful in many cases, no?

Thanks!

[LR1234]

I had a CT scan (and an MRV) but CT uses radiation and at quite high doses I think.