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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Badger
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PostPosted: Fri Aug 13, 2010 2:39 am 
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Dear Dr. Scalafani,

I had the Liberation procedure in Poland on 23/24th March, I had a stent placed in my Azygos vein and noticed the effects initially.

I have just returned from holiday where I went downhill and required a wheelchair during my time on holiday.

On my return I found out about the May-Thurner-Syndrome. After my initial reading on the Syndrome it seems to tie in with the effects I have been feelin. My right leg is a complete dead weight and I am required to hold on to someone or something to get around the house.

If you have any further information please let me know.

Regards

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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CureOrBust
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PostPosted: Fri Aug 13, 2010 6:45 am 
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Algis wrote:
I am still downloading it (75%~) - it is a real pain since "I" am limited to 500MB "per passport" which seems to last for 36 hours. It will not take credit card from my area...
All depending on your internet set-up, however you could possibly be the same as me. I personally do not have a fixed IP address. So, every time I reboot my modem, I get a different IP address. With a different IP address, the web site has no idea I just downloaded 400+ mb (i look like a new user), and so I can start downloading the next portion straight away. I have the reboot of my modem configured as a script, however the same thing is achieved by turning it off for a few seconds then back on again.
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CureOrBust
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Admittedly I have yet to view the symposium video, but I was wondering if there is anyone else out there using IVUS for CCSVI?

I spoke with my Dr, and he said he would be prepared to use IVUS on me if I covered the additional costs (ie the single-use catheter), which I would be more than prepared to foot the bill for.
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siduri
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PostPosted: Fri Aug 13, 2010 8:58 am 
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MS HOPE - you stated so eloquently what so many of us feel - I hope you don't mind if I just tag on my - - ditto!

Dr. Sclafani, I don't know that we've ever had such an advocate before. Sorry - no question, just appreciation from another pwMS feeling like a chlorophyll starved plant that finally sees a ray of sun peeking through the cracks.
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Nunzio
 Post subject: NIVL
PostPosted: Fri Aug 13, 2010 9:41 am 
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Hi Dr Sclafani,
thank you for your extensive and informative answer to my previous question.
I came across a condition called Nonthrombotic Iliac Vein Lesion.(NIVL). <shortened url>
It encompasses May-Thurner syndrome but it can be present on both left and right side. The paper explains that it is present in 66% of general population, using venography you can miss 50% of these lesions, but using IVUS you can diagnose >90% of the problems. It is a permissive lesion, not causing problems in healthy individuals but worsening preexisting conditions.(CCSVI with Azygous involvement)
The reason I think this is important is that entering on the left side might miss the right side lesions and some of the left side problems too unless IVUS is used. Please let Paolo and Roberto know about this since I know you correspond with them by e-mail if you think this is relevant.
Now a question: do you need to have the renal vein restricted for May-Thurner to affect the Azygous vein?
Thanks for your dedication.

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />


Last edited by Nunzio on Sat Aug 14, 2010 2:33 am, edited 3 times in total.

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Rogerp117
 Post subject: Statins and niacin
PostPosted: Fri Aug 13, 2010 9:55 am 
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Dr. Sclafani thank you for your good work and your dedication.

I am a PPMS'er diagnosed in 1985, with symptoms starting in the late seventies. Needless to say, I am now quite disabled, an 8 on the EDSS scale. IM desperately seeking someone who will test /treat for CCSVI preferably in the Midwest.

Anyway, my question is this. Since CCSVI, or CS VI per your designation in the recent symposium in Warren Michigan, is a restriction of the veins, wouldn't it seem to be logical to reduce any additional restrictions that may be caused by cholesterol? I reference the recent preliminary study data from a California study that indicates a high reduction in relapses for RRMS'ers that we're taking a statin.

http://www.wsoctv.com/health/24451117/detail.html
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Cece
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PostPosted: Fri Aug 13, 2010 10:32 am 
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CureOrBust wrote:
Admittedly I have yet to view the symposium video, but I was wondering if there is anyone else out there using IVUS for CCSVI?

Here on the forums people have reported having IVUS used by Dr. Dake for a follow-up visit and by a Dr. A on the west cost. There is also a Dr. R who was reported last January to be looking into ccsvi and who is an expert in May-Thurner for which he uses IVUS. The two Albany doctors specifically do not use IVUS.

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"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


Last edited by Cece on Fri Aug 13, 2010 6:00 pm, edited 1 time in total.

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fogdweller
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PostPosted: Fri Aug 13, 2010 10:41 am 
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fogdweller wrote:
Dr. S, I have been greatly concerned over the definition of CCSVI and the degree of variability between patients. Many contributers here and on other threads talk of whether a person has CCSVI or not as if it were a simple thing like wether they had two kidneys or not.

Is it that simple and the easily determined between individuals? It seems to me that every person's veinous system is unique and very complex, and some may be very sensitive to small disruptions and others relatively insensitive to the same disruption. A blockage at one location might be very problematic for one patient and relatively benign for another. Similarly the testing and imaging techniques employed might find problems in a patient where different imaging technique in the same individuals, or different definition of CCSVI might find the opposite. Is that correct?

Did you and your collegues reach a consensus as to what constitutes CCSVI and what imaging protocol to follow?

Also, did you discuss how you would conduct a clinical trial to blind both patients and physicians?

I appplologize if the answers to these questions are on the video of the conference, but I haven't been able to find that.


This was dropped many pages baci while you were away. Sorryfor the repeat, but I am still intertested in this issue.
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lucky125
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PostPosted: Fri Aug 13, 2010 11:29 am 
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CureOrBust wrote:
Admittedly I have yet to view the symposium video, but I was wondering if there is anyone else out there using IVUS for CCSVI?

I spoke with my Dr, and he said he would be prepared to use IVUS on me if I covered the additional costs (ie the single-use catheter), which I would be more than prepared to foot the bill for.


Neville at Georgetown, and a doctor at U. of MD both use IVUS. I don't remember who else at the symposium mentioned that they use it. Sinan? Petrov?

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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elliberato
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PostPosted: Fri Aug 13, 2010 2:07 pm 
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Dr,
Since this entire CCSVI theory I cant stop observing peoples necks while I speak with them and the apparent jugular protrusions! Sick I know, but true. Why when people talk the jug veins are exposed out of the neck;when I was under the impression the vein collapses in the standing postition?
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Drury
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PostPosted: Fri Aug 13, 2010 2:24 pm 
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Dr. Sclafani,

What are your thoughts on CCSVI treatment and taking the contraceptive pill?

My daughter recently called her gynecologist's office to change her contraceptive pill and spoke briefly about the possibility of having CCSVI treatment. Her doctor called her back and said she was very concerned about my daughter having any kind of vascular treatment whilst being on the pill because of the risk of blood clots.

Given that we are only just learning about blood flow and MS do you think the pill could be an issue?

Drury
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1eye
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PostPosted: Fri Aug 13, 2010 9:55 pm 
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Hi.

I just read your response to one of 'those' papers. Thought it was first-rate.

A couple of questions...

Do you think if a person has no reprieve from reflux because they have it in jugulars when prone and vertebrals when upright, that might lead to PPMS?

and

Do you have anything to do with that 'Columbia' clinic in NYC?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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drsclafani
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PostPosted: Sat Aug 14, 2010 5:20 pm 
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msjen wrote:
I am wondering about the stenosis coming and going thing again. When I have an MS "relapse" it lasts for about a two or more weeks. Is this related to the oxygen deprivation in the brain or what?? Thanks!

i think that we can guess about exactly why relapses occur. but it seems some inflammatory aspect of the disease. in the CCSVI hypothesis, one could think that backwash of venous blood led to leakage and inflammation, but only a hypothesis
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drsclafani
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kaboodah wrote:
Dr. S -
I know you are not an MS doctor, you do the plumbing (so to speak). I am wondering if you have a theoretical answer to this though. If our veins are blocked, they don't block and unblock themselves, right? Why the relapses? It would seem to me that if our veins are continuously blocked then we would be in a continuous relapse, right?


theoretically, sometimes the back flow backs up over the bank of the river. perhaps that leads to more inflammation.

Have you ever noticed that the veins on your hand are sometimes bigger than others. have you ever noticed in the mirror that if you scream, your veins bulge. those things happen in all the veins, even the ones you cannot see. even in those of the neck and brain
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drsclafani
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PostPosted: Sat Aug 14, 2010 5:26 pm 
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L wrote:
When will your IRB be considering another proposal for a study Dr Sclafani?


i have a few "experiments" i am planning, but i cannot tell you when the university will be be accepting an irb proposal.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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