DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby dado84 » Wed May 05, 2010 11:35 am

Hello Dr Sclafani

I had mine catheter venography which showed no obstructions in jagular and azygous veins. Before venography i had Dopplar scan which showed reduced flow in my vertebral veins. I know from previous posts that venous plexus has a quite a different system but in your experience is it possible that stenosis in venous plexus could create as big problems as jagular and azygous?

Thank you
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Re: for those afraid to stent

Postby hoodyup » Thu May 06, 2010 9:22 am

drsclafani wrote:
hoodyup wrote:Hi, Dr. Sclafani.

About 2 weeks my wife had her right IJV balloned in 3 places and experienced some drastic improvements for about a week, then she reverted to her previous state. We are going to have to schedule another MRV and repeat the process again.

Question #1 If you were treating a suspected restenosis would you repeat this scan or just go for another venogram?

Question #2 Our IR, who is a 30+ year surgeon says he is reluctant to stent jugulars. I was wondering if you had any advice for other vascular surgeons or would be open to sharing "trade secrets" with other IR's regarding placement of stents in jugulars. I'm sure it would be on a case by case basis as patients veins are all different. I could PM you with his contact info if you are willing to consult with him.

Thanks,
Andrew


dear andrew. this is not that uncommon.
i would go right back to a venogram.
and I would likely do another angioplasty but without the images i can only speak generally..

Many people have asked if i would speak to their doctor and then want to send me their doctors name etc. I cannot do this. I think it would be unethical. Besides while i love you all and care about you, i am not your doctor and i cannot barge in on your doctor's treatment of you.

i am just a plumber writing a gossip column


Dr. Sclafani,
Thank you for answering my questions. Thanks to you I was able to convince my IR to go straight for the venography, which we are in the process of scheduling.

I have a general question about the route the catheter takes when probing the jugular and azygos veins. I know the insertion point is in the groin but where does it go from there?

Also, could you elaborate on this IVUS you spoke of as an imaging technique? Is this a common tool of vascular surgeons?

I know we are in a time of discovery and I believe your work will help pave the way for future IR's to give the best possible treatment for their MS patients. Being a plumber does not exclude you from being a hero to many. Thanks again, doc!

Andrew
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Postby costumenastional » Thu May 06, 2010 9:44 am

Dear doctor Sclafani:

I have had the procedure on Monday (i am in Sofia and dr Petrov from Grozdinski's team operated on me). They seem to know what they are doing but who am i to tell.
Anyway, i have to say nothing has changed so far except from a very strange feeling of shoulder muscle relaxing of some kind. One question would be if you know of any patient to show ANY kind of improvement after days or weeks (or even months haha) instead of right after the procedure :(
When i will be cured doc????

Ok,the real question for you is the following:

I have had two doppler tests. One in Greece and one here by Grozdinski. They both showed critical absence of flow in both my jugs for some strange reason. Strange i say cause once Petrov went inside the problem in my jugular was like 30% stenosis in my right and somewhat more than moderate stenosis in 2 places (high and low) in my left. I dont have my epicrisis translated yet but thats what i was told during the op. They ballooned all over the left jug (i must say that the pain was worth to mention) and this went for my azy too cause it seems there was a problem found there also.

So, here goes: how come the doppler AFTER the operation showed that flow in both my jugs is now perfect??? i get it for my left one but they didnt do anything special in my right except for a balloon dilatation which i didnt even feel. Petrov told me this was normal cause he just did it to make sure but there was no real problem there to begin with.

This is not logical. The report from the after op doppler is 5 mms width for BOTH jugs while before it was 1mm. And the difference is obvious indeed even to me. Do you think i may experiencing some kind of Xfiles situation here?

xcept from ms itself i mean...

ps: i ll tell you what their reply was on that matter but first i hope yours will make sense. cause theirs doesn't.
Last edited by costumenastional on Thu May 06, 2010 10:56 am, edited 1 time in total.
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Postby Zeureka » Thu May 06, 2010 10:17 am

drsclafani wrote:
[quote]I rely upon IVUS to assess valve movement and function as well as venography. Sometimes the venogram looks like stenosis but IVUS shows that it is a nonfunctional valve.[quote]

=> Dr Sclafani, thanks so much if you could explain to me some technical terms related to this:

- what "CT scans" are that you said you used to generally study the azygous in more detail => so you then know better during angiography in which angle to turn catheter to find pathologic valves in azygous/jugular? (Did I understand that correct?)

- and also what "IVUS" is?

- and if you say "venogram" and "venography" you mean the MRV ? I thought venography was identical to angiography (with catheter)....sorry...I get a bit confused now...
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Re: for those afraid to stent

Postby Cece » Thu May 06, 2010 11:05 am

hoodyup wrote:I have a general question about the route the catheter takes when probing the jugular and azygos veins. I know the insertion point is in the groin but where does it go from there?
One of my first questions, over in the thread for patients of Dr. Mehta, was along these lines...basically "How do they avoid going through the heart?" and his answer was that they do go through the heart but the catheter is small enough that it's not an issue. So I'm okay with that now. :)
Zeureka wrote:- and also what "IVUS" is?

IVUS is intravascular ultrasound, a tiny ultrasound camera on the tip of a catheter, so he can get images of the veins from inside of them.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Cece » Thu May 06, 2010 11:26 am

costumenastional wrote:So, here goes: how come the doppler AFTER the operation showed that flow in both my jugs is now perfect???

Huh! That is strange, I am curious what he'll say. Could a blockage in the azygous be so bad that it blocks up the whole system, so that the right jugular was affected only because nothing was flowing? I am thinking of plumbing pipes...if it's at a standstill below, it'd be at a standstill further up, even if nothing is physically blocking it at that point. Just the fact that they found a problem in the azygous may mean that it was a pretty bad azygous (it is my belief that the azygous is being generally undertreated because of the difficulties in imaging there...so that only a particularly obvious one would be found...). Sorry to hear about your lack of immediate improvements, I hope they will be coming in the days ahead.

This is my favorite thread, perhaps it shows. :)
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Postby costumenastional » Thu May 06, 2010 12:50 pm

Cece wrote:Could a blockage in the azygous be so bad that it blocks up the whole system, so that the right jugular was affected only because nothing was flowing?


I dont think so Cece. Once you realize how far they are from each other and most important how tiny the flow alterations may be after intervention in the azy (at least in my case) this option becomes science fiction. Furthermore, not all ccsvi cases are so jaw dropping.
My azygos vein was not critically stenosed. There was flow just not perfect flow.
Petrov could recognize that there was a problem there alright. But my understanding is that they dont really know all about CCSVI and what Zamboni suggests in detail (reflux and all...). I might be wrong, just my impression...
Dr Sclafani might be more capable to recognize if i have had ccsvi for real and to what extend after i upload my operation cds in the near future.

I suggest we wait for him to share with us.
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Postby hoodyup » Thu May 06, 2010 12:51 pm

Cece wrote: Could a blockage in the azygous be so bad that it blocks up the whole system, so that the right jugular was affected only because nothing was flowing? I am thinking of plumbing pipes...if it's at a standstill below, it'd be at a standstill further up, even if nothing is physically blocking it at that point. Just the fact that they found a problem in the azygous may mean that it was a pretty bad azygous (it is my belief that the azygous is being generally undertreated because of the difficulties in imaging there...


Thanks, Cece. This is quite an incredible resource, this thread.

This was kind of what I was hoping to get at with my question. My IR said the azygos was fine (how well did he check it?) Is the azygos a branch off of or is it the main route when doing the jugular venogram? Does the probe have to go there or is it a detour down a difficult road? I am hoping my wife's issues will be resolved, but I don't know if I should be "schooling" a 30+ year vein guy if I don't know my road map myself (or basic anatomy for that matter). Any knowlege is appreciated!

Andrew
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Postby simone » Thu May 06, 2010 1:15 pm

" Genetic research proved in Aug. 2009 that people with MS have a defective chromosome 6p21.32 venous disease. It was only released to the public on April 28, 2010, after the Annual Neurologic meeting in Toronto Canada."

http://cursa.ihmc.us/rid=1GM08PNRK-1CHG ... f%20MS.pdf

Do you know anything of that? It seems rather important..


From Dr. Sclafani:

"this is preliminary complicated research that does indicate what we believe,,,,,that ccsvi in MS is caused by a congenital malformation of the veins draining the brain and spinal cord

and please do post on the thread....that is what it is for. Some of us have to have the courage to ask questions, all benefit, even those who are nervous about asking questions Wink"



Wondering how (and if ) the neurologists received this.( It could give them something to do.)
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Postby Cece » Thu May 06, 2010 2:10 pm

hoodyup wrote:Is the azygos a branch off of or is it the main route when doing the jugular venogram? Does the probe have to go there or is it a detour down a difficult road?

Now you've got me curious on this too. :) I remember in Wheelchair Kamikaze's blog, he mentioned of his venoplasty that the azygous was tough to reach (?) and that Dr. Sclafani was frustrated because if he'd had a different tool he could've reached further (?). (Question marks are because I do not fully feel my memory is reliable!)

I am sorry, I hope it's clear that I don't mean anything I offer as anything beyond cross-talk, while the expert is away. I did not mean to offend when I commented so directly on costumenational's post. If what I was thinking truly is science fiction, that is good to know! And if not, that would be good too. :oops:
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Postby Zeureka » Thu May 06, 2010 2:54 pm

Cece wrote:I am sorry, I hope it's clear that I don't mean anything I offer as anything beyond cross-talk, while the expert is away. I did not mean to offend when I commented so directly on costumenational's post. If what I was thinking truly is science fiction, that is good to know! And if not, that would be good too. :oops:
Hey Cece, don't think anyone thinks that...I'm sorry for costumenastional too that until now no improvements, but my dear Greek friend, you remember me being sceptical when started posting on TIMS and not ever believed they would find a stenosis ;-) ?
May I now say: lets not forget also the importance of the preventative effect impact! And also after a few days only in no way excluded that improvements may still come! Did they not monitor improvements in Kuwait after 1 month? And thanks Cece for your answer on IVUS by the way...
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Postby drsclafani » Thu May 06, 2010 3:40 pm

Dr Sclafani might be more capable to recognize if i have had ccsvi for real and to what extend after i upload my operation cds in the near future.

I suggest we wait for him to share with us.


sorry i have been incommunicado for the past couple of days. I was trying to get permission to do some compassionate exception cases at the university but I got shot down. It is difficult to not do followup on patient i have already treated and to take care of the patients who were about to be treated when i got shot dow

So i was feeling pretty angry and depressed yesterday. After skimming the commentary on tims , i started to stop feeling sorry for myself

I will be back later. I have to go to the nyc police surgeons dinner now

......I am a cop, you know.
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Postby Cece » Thu May 06, 2010 4:03 pm

drsclafani wrote:It is difficult to not do followup on patient i have already treated and to take care of the patients who were about to be treated when i got shot dow

I can't even imagine how frustrating that must be.

I was bummed yesterday too, it was my originally scheduled day for the procedure, but it was also my birthday so there was cake and family and all the good stuff.

The delay isn't so bad, it's the not knowing if the IRB will approve at the end of the delay. So I need not an ask-Dr-Sclafani thread, but an ask-the-magic-ball thread: will the IRB approve? And when? :)
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positive energy

Postby newlywed4ever » Thu May 06, 2010 4:18 pm

Hey, Doc - we also appreciate you sharing your feelings of anger, frustration, impatience, etc. You have given us hope and we sometimes forget what you're going through on behalf of US! I believe wholeheartedly that we feel best about ourselves when we help others - please be assured that you are still helping us - maybe not in the way you prefer but it's still invaluable. We've come to know you as an outstanding Dr...now you're telling us you're a NYC cop, too?!? Do you also wear a shirt with a big S on it? :wink:
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Postby drsclafani » Thu May 06, 2010 7:00 pm

Zeureka wrote:
As regards the valve issue, would be interested Dr Sclafani if in case of several CCSVI issues found in a patient in different places (eg two or three), were these always of the same type? For example, all with problems of pathologic valves or all due to stenosis of the wall... I have only been wondering since CCSVI is congenital then maybe one has maybe genetically the same type of pathology in several veins in the body?


The body and its pathology is rarely that boring. In the case of CCSVI, there are so many variations of the disease and its anatomical pathology

To date I have seen the following: In most patients they are mixed

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

So variation is the rule.



And an additional question: if in the azygous those valve issues are often not detected or underestimated...hmmm...with a friend of mine that also has extensive spinal cord issues no stenosis in the azygous was found, but he got angioplasty of his left internal jugular, where a larger stenosis was found.

(I still wonder that it is indeed "enigmatic" not to detect these valve problematics in the azygous after MRV and then the catether venography at the moment of percutaneous venoplasty itself?! Are they easier to detect in the jugulars since there the doppler exam reveals them? So in the MRV you would not see a malformed valve in the jugular that you saw in the doppler exam? And what could be done to improve techniques to find these valve pathologies in the azygous?)


people will see what they are prepared to see. When I finally get back in the saddle, i promise that all these findings, and more, i assume, will need to be publishes and explained so that those who want to treat in the future, do not have to figure it out from scratch.

My friend had some improvements with sight (black curtains gone) and more energy/less fatigue...but as regards the potential preventative effect that might relate to CCSVI and then the prevention of further spinal myelin damage we are now wondering...if the azygous really not affected, maybe one of these other venous passages ?? Guess for the moment only god knows...[/quote]
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