DrSclafani answers some questions

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

Postby L » Thu Jun 10, 2010 6:45 pm

scorpion wrote:L maybe Simka and Zamboni's results were skewed. That is another conclusion one can draw. Dr. Sclafani please share your response as to why some of the people on this board are relapsing after the liberation procedure. Does that make you question the relevance of the CCSVI?


So your a conspiracy theorist now? Cool! Welcome to the club.

PS, I myself would be amazed if relapses were stopped dead by addressing CCSVI, I'd give it six months or so, I mean the problem has been addressed but not reversed, right? I'm no scientist though..
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Postby SofiaK » Thu Jun 10, 2010 7:09 pm

Gee, thanks for the figures L.

Wouldn't the MRV test show the narrowing accurately, however?
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Postby girlgeek33 » Thu Jun 10, 2010 7:18 pm

SofiaK wrote:Gee, thanks for the figures L.

Wouldn't the MRV test show the narrowing accurately, however?


Sofia, MRV may not show everything. From what I understand the azygous veins can't be easily seen on MRV, the only test that can truly get a picture of what is going on with azygous is the venogram, which is the same as when you actually get treated.

Each of the tests show different things. MRV can give a picture of the outside of the veins. Possibly showing stenosis. Doppler ultrasound can show what is happening with the blood flow. The can see the blood flow, see how much is refluxing and they even listen to it. There is a very different sound when there is reflux. Venogram, they can get a picture of what is happening inside the veins. Sometimes if they don't already have an MRV and Doppler, if a doc just goes in and does venogram, simply because the catheter has gone in, in a few cases, they might miss an issue because they've pushed the catheter through, say a faulty valve. (which has been written about on this thread).

So, because of this, it isn't that one test is better than another, they can learn different things from the different tests...

Hope this helps...
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Postby SofiaK » Thu Jun 10, 2010 7:47 pm

Thanks girlgeek33. Great info! I understand.

This dr I know of does a catheter venogram. I'm concerned about his procedure finding everything.
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Postby girlgeek33 » Thu Jun 10, 2010 7:51 pm

SofiaK wrote:Thanks girlgeek33. Great info! I understand.

This dr I know of does a catheter venogram. I'm concerned about his procedure finding everything.


I think the risk of not finding something with venogram is minimal... It can happen, but not often...
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Postby Cece » Thu Jun 10, 2010 8:55 pm

L wrote:
SofiaK wrote:Dr Sclafani:

Do all MS patients have vein narrowing? An MRV should show any narrowing, no?

I’m confused because I’m hearing different things.

Many thanks,
Sofia


Now these figures are rough, from the top of my head, but I believe that Zamboni found a 100% correlation, Simka 92%, Zivanidov 55% but a figure around 85% with progressive MS and Kuwait 100%. Then Bochum found 22% but, we guess, that they weren't quite trained to the degree necessary. How else to square the circle but to conclude that?


But those figures are for all CCSVI in general. CCSVI can include vein narrowing, malformed valves, trash can lid membranes, missing jugulars, a whole list of things. So while every MSer has CCSVI (or so the evidence leans toward this), no, not every MSer has narrowed veins.

girlgeek33 wrote:I think the risk of not finding something with venogram is minimal... It can happen, but not often...


They will find something, but will they find everything? I fear the average MSer is being undertreated, due to doctors finding only the very obvious malformations.
"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 Jun 10, 2010 9:17 pm

scorpion wrote:Dr. Sclafani please share your response as to why some of the people on this board are relapsing after the liberation procedure. Does that make you question the relevance of the CCSVI?

Here was his response to savouryourlife, who was experiencing relapse after treatment:
drsclafani wrote:
savouryourlife wrote: I am at a real loss here both emotionally and financially as I can't go back to Germany nor do I know if it would be worth it seeing how fast the vein collapsed, again.

I know you won't comment on this scenario as it wasn't your work. I just wanted to state that re stenosis can happen, almost immediately, following ballooning.


it is called elastic recoil or an insufficiently dilated vessel
i would be surprised if the lack of anticoagulation caused restenosis. It might cause thrombosis but not likely to cause restenosis.


Elastic recoil seems to be a real problem. The vein wants to retake the shape it's been for however many decades.
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Re: Dr. Sclafani

Postby Cece » Thu Jun 10, 2010 9:40 pm

drsclafani wrote:
msfitz wrote:Do you know when you might be permitted to perform testing and treatment again? I live in the MW and nobody seems interested in CCSVI, I've written teaching hospitals, universities even a VS/IR clinic (VIRChicaco) all in or near Chicago also St. Louis University. The clinic did say they were going to start a study, but I can't wait. I already use a walker and will be going to assisted living in July. I was just divorced Dec. '09 and I know I'll never be 100% but even the smallest improvement is stilll an inprovement and a big one is you've lived with MS for fifteen years! My biggest problem is that I can barely use my right leg, and I have terrible drop foot, I hear drop foot is one of the symptons people are showing improvement with after being liberated, and I just want a chance to get even a little better and if not, we'll know CCSVI wasn't my problem!

Please inform us when you can do the procedure again, thank you.

Bridget Wehmeyer


bridget
follow my message below to sofia. Get on the waiting list. maybe more than one. Time will go by and you will be treated. Do not wait to get on a list,

when the logjam breaks you want to be in the boat


Dr. Sclafani, this sad news was posted elsewhere here, but I wasn't sure you were aware of it. Bridget Wehmeyer, who posted the above, passed away on May 26th at the age of 44 from complications of MS. Her post above was the only post she made on thisisms.com.
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Postby QueenMum » Thu Jun 10, 2010 10:09 pm

Heartbreaking news. Thanks for letting us know Cece.

Mum
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Postby QueenMum » Thu Jun 10, 2010 10:14 pm

Double post... sorry. This news hit me hard.
Last edited by QueenMum on Thu Jun 10, 2010 10:38 pm, edited 2 times in total.
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I decided in December to have stents put in.

Postby larmo » Thu Jun 10, 2010 10:16 pm

I decided in December to have stents put in. The odds of me getting restenosis will be greatly diminished.
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Re: Dr. Sclafani

Postby girlgeek33 » Fri Jun 11, 2010 4:46 am

Cece wrote:
drsclafani wrote:
msfitz wrote:Do you know when you might be permitted to perform testing and treatment again? I live in the MW and nobody seems interested in CCSVI, I've written teaching hospitals, universities even a VS/IR clinic (VIRChicaco) all in or near Chicago also St. Louis University. The clinic did say they were going to start a study, but I can't wait. I already use a walker and will be going to assisted living in July. I was just divorced Dec. '09 and I know I'll never be 100% but even the smallest improvement is stilll an inprovement and a big one is you've lived with MS for fifteen years! My biggest problem is that I can barely use my right leg, and I have terrible drop foot, I hear drop foot is one of the symptons people are showing improvement with after being liberated, and I just want a chance to get even a little better and if not, we'll know CCSVI wasn't my problem!

Please inform us when you can do the procedure again, thank you.

Bridget Wehmeyer


bridget
follow my message below to sofia. Get on the waiting list. maybe more than one. Time will go by and you will be treated. Do not wait to get on a list,

when the logjam breaks you want to be in the boat


Dr. Sclafani, this sad news was posted elsewhere here, but I wasn't sure you were aware of it. Bridget Wehmeyer, who posted the above, passed away on May 26th at the age of 44 from complications of MS. Her post above was the only post she made on thisisms.com.


This is the death I posted about a few weeks back. Not sure the question along with it was answered. I wanted to know since she was in the hospital for about 2 weeks leading up to her death, aren't they supposed to try to do everything to preserve life? I feel like they had her there, I'm sure the hospital would have everything they need to do to perform any test that might lead them to see CCSVI. Bridget was well aware of CCSVI. Could a hospital be so cold as to ignore an opportunity to do something that could have prevented her death? I'm sorry, maybe I'm just trying to deal with this, I had been helping Bridget find information, was answering her questions and we had both been supporting each other with our search for Liberation. She became my friend and we hoped to actually meet in person one day, celebrating our liberations.
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Postby JOJOB » Fri Jun 11, 2010 5:35 am

Very, very sad news indeed !!!

I am so sorry and angry when this happens. Poor Bridget !
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Postby mshusband » Fri Jun 11, 2010 5:39 am

I'm sorry, I know we all love Dr. Sclafani's thread as evidenced by it not leaving the first page in months now ... but can't we keep it to asking him questions and not a discussion page? He is very gracious to come here and help anyone with questions regarding CCSVI and further our knowledge ...

But I feel he will have to wade through pages and pages of information now to find a question and something could be missed that someone could find very important.

Please, let's keep this thread to its intended topic.

Respectfully ...
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Postby makkie » Fri Jun 11, 2010 6:03 am

drsclafani wrote:we all start by seeing and treating high lesions but mostly what we end up with is believing that the low stenoses are the real culprits

Somehow i think zamboni is right. The IVUS often shows that these higher narrowings are phasic. I hope yours is not and that the treatment will now start to improve things


Dear Dr. Sclafani,
I should like to ask you 3 questions regarding your remarks:

1) Does 'we all start by seeing and treaating the high lesions' mean that these lessions are easier to discover than the low stenosis, which you think are the real culprits.
2) Can you please say somthing more specific about what is high and what are low stenosis. I mean the location.
3) Can you please explain what you mean with 'the higher narrowings are phasic'. I looked up phasic in the dictionary but could find what it means in this context.

I should like to inform you that in The Netherlands and Germany there are now 2 private clinics with German doctors who say they treat CCSVI for MS. I have compared prices with other treatments like in Poland and there is not much difference. Most insurance companies are not willing to pay anything, at least not in The Netherlands.

Here are the links for both clinics:
http://www.ccsvi-online.com/ for PrivateScan
http://www.prescan.nl/nl/onderzoeken/onderzoek-ccsvi (PreScan only in Dutch)

Thank you for the wonderfull efforts you made to inform us all on this matter.
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