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After a false negative catheter Venogram - Dr S said here was CCSVI when i sent him the images, i am now going to Poland for new testing (doppler/MRV) and treatment
But dr S said i had May Thurners too, so what do i ask or request my doctor to do for the procedure?
do i just ask them to enter via the left illiac vein?
how can i persuade them too, as i read its more difficult for them to enter through the left
thank you
whoa......it is not that difficult at all. just a bit more inconvenient actually. and the operator's arm is closer to the xray.
they are probably going to want to do it they way they want. but you could tell them that zamboni (not sclafani) does it that way
drsclafani wrote:
kissing balloons are two balloons in the SAME vein. thus effectively increasing the diameter of the dilatation. Putting in a double sized balloon has the drawback that lower pressure is generated. Putting in two balloons in increases diameter but without sacrifice of lower pressure
someone has suggested privately that this statement was provocative in its innuendo. sort of like luxuriant vicarious perfusion.
A vein that is not "responding" to ballooning (instant multiple restenose etc...) should be a better candidate for stent isn't it? Since it 'naturally' collapse and squeeze the vein; it shall much easily 'integrate' the stent in the wall?
drbart wrote:So I've been pondering Zamboni's 50% after 18 months observation, and taking in Siskin's "rule of thirds", and I'm wondering if the net effect is drastic under-reporting of restenosis.
Think about it - you have 1/3 patients not seeing any improvement .. are they going to know or care if they restenose? And did they maybe restenose before any improvements could be noticed in the first place?
And how many of the 1/3 moderate improvement folk who restenose aren't going back for follow-up?
Did Sinan report different success rates (more than 1/3) or restenosis rates with his Big Balloon methods?
My anecdotal sampling of cases I personally know about suggests to me that most angios - with the standard small balloons anyway - start restenosing within a few weeks.
I'd be happy to be corrected on this.
so would i, but, bart, the data needs to be published and it hasnt yet. it is too soon even for short term results to be published.
clearly we need to learn
who has best response, least response
who restenosis, why
how do we improve early outcomes
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
badger
i doubt that your symptoms are related to may thurner
the symptoms of M.T.S. are blockage of the leg vein with swelling, clotting and pain in the calf. you are likely to have restenosis of your stented azygous vein, probably intimal hyperplasia
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.
i think it would be well worth the extra expense, even out of pocket PROVIDED the proceduralist had already been experienced in IVUS. I would not pay extra to have someone trying to figure out how to interpret the findings. We already have too many people learning on the fly trying to figure out what they are seeing
Nunzio wrote: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.
dear nunzio
i think that entering the left side is not only to look for MTS. it is also to allow simple catheterization of the left ascending lumbar vein to better assess the lumbar veins. I am not clear how ivus improves on venography, unless you are unfamiliar with the signs of compression of the iliac vein. truly, i have not noted commonly the narrowing by compression on the right that is so often evident on the left iliac. I will pay more attention to that area when i perform venography for other reasons.
i agree that these narrowings are likely to be permissive lesions that do not become m anifest without signs related to associated pathology.
Thank you for this information. very much appreciated.
drsclafani wrote:
kissing balloons are two balloons in the SAME vein. thus effectively increasing the diameter of the dilatation. Putting in a double sized balloon has the drawback that lower pressure is generated. Putting in two balloons in increases diameter but without sacrifice of lower pressure
someone has suggested privately that this statement was provocative in its innuendo. sort of like luxuriant vicarious perfusion.
i meant no disrespect to anyone.
For what it's worth, I had asked about kissing balloons because I'd read in someone's review of the symposium that the IRs had debated the pros and cons of cutting balloons and kissing balloons. I meant no disrespect either!
"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
Rogerp117 wrote: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.
roger, i think it is actually two different issues. I am not familiar with atherosclerosis affecting significantly the veins. cholesteral and plaque affects the arteries. These papers that speak about cardiovascular influence on MS are speaking about arterial problems, not venous problems.
i think that hypercholesterolemia is bad for everyone: those with ms and those without and that statins are good for many reasons.
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.
there are other doctors who also use IVUS.
fyi, the unit is quite expensive, costing more than $120,000 and the catheters are at least $650 for one time use. However, i have learned a lot and discovered problems not seen on venography or external doppler.
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.
ccsvi is a term coined by dr zamboni
chronic meaning occuring repeatedly over a long time
cerebrospinal venous pertaining to the brain and spine
venous insufficiency meaning that the venous outflow is insufficient for the needs of drainage.
he detects that by ultrasound which shows reflux up into the veins that should be draining down toward the heart
it is a diagnosis made by US. its consequences in the brain are a hypothesis. several patterns of insufficiency have been defined. how they reflect neurological effects is not yet clarified
