Arlene Hubbard's notes on the AAC symposium

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

Arlene Hubbard's notes on the AAC symposium

Postby Cece » Fri Jul 22, 2011 11:09 am

This is a quote from Arlene Hubbard over on Facebook.
http://tinyurl.com/3jjzznl
Arlene Hubbard wrote:@Amy, Avis Favaro is here. David and I are having dinner with Kirsty Duncan. Clive Beggs spoke this morning about venous hemodynamics in CCSVI in MS. He discussed how the cerebral veins were most affected. He also discussed that lesions often occur bilaterally and are periventricular. Occlusion of IJVs increases blood volume in the cerebral veins and sinuses. Dr Haacke discussed flow quantification which needs to be looked at before and after treatment. He questioned if someone should be treated if they have good flow but a "bad valve". Dr Salvi talked about hydrocephalus in Neurodegenerative disease. signs of hydrocephalus are progressive mental and neurological degeneration, gait problems, incontinence. There is clinical improvement with CSF shunting. Hydrocephalus is associated with CCSVI. I did not attend some of the afternoon talks on doppler. I did here Diana Driscoll OD talk on her 3 studies discussing Ehlers Danlos Syndrome and MS. There is an overlap of EDS and MS. People with EDS have Mast Cell Disease in the CSF. the triggers for mast cell are the same as those for MS. Symptoms of mast cell disease are brain fog, dementia, bipolar behavior, fatigue.

OK! Some more information: Kevin Sullivan MD disscussed the procedure. Valves are thin and are resilient. The side of the valve towards the heart tends to be the side that restenosis more often. Dr Sclafani reported on the use of IVUS in venoplasty. The IVUS can see the wall, septum, valves and motion of the valves and webs. It's very expensive to purchase and increases the time of the procedure. The most common cause of restenosis is the valve. Dr Don Ponec discussed lesion types...stuck valves, extrinsic compression; treatment options...balloon angioplasty, high pressure cutting balloons, cryoplasty etc. Most of the lesions are in the lower jugulars. We need to try to standardize as much as possible to protect the patient. People claiming one technique is better than others needs to collect data. There are lots of issues with stents and eventually there will be stents for veins.Gary Siskin talked about upper lesions which are usually secondary to extrinsic compression ie the posterior aspect of the IJV rests along C1. Lots of discussion regarding how many times a person could undergo venous angioplasty. He explained that 1-2 times yes but the 3rd is riskier due to possiblity of Thrombis. Where is the tipping point before venous angioplasty does more harm than good? Doctors need to be carful when treating a 2nd or 3rd time. Staying consservative makes more sense than being aggressive in 2nd or 3rd procedures. Being aggressive may make things worse. Dr Ivo Petrov stated that stenting may prevent restenosis but it also increases the rate of thrombosis. He uses self expandible stents not balloon expanding stents. During the panel discussion blood thinners were discussed from aspirin to Pradaxa to Coumadin.(no consensus). Dr Sisken said everything IRs are doing should be published! Dr Ponec presented the Hubbard Study showing statistically significant improvement at 1 and 6 months. Waiting to collect more data before submitting for publication. Dr Zivadinov discussed the Buffalo study..they are still looking for participants for this double blind placebo controlled study. We still have a long journey but the more studies done and published the more we can standardize the testing,and treatment. Hope this information helps.

This is packed with information.
The CSF shunting is a new idea. How exciting if it is an option for some MS patients, particularly those patients who have something (dural sinus abnormality, jugular hypoplasia) that cannot be treated.

I am waiting for DrDiana to stop by and tell us about these mast cells!

We are hearing different things about how many times the procedure can be repeated. At the Patient Day, this was asked of Dr. Sclafani. His response was that it was unlimited. He added that if he found a limit, he would let us know. On a personal level, I have now had the procedure twice. I've responded both times. If I restenose, I would hope to have it again but would hope for it to be safe to do this. Dr. Cumming has said before that in some other diseases, he balloons their veins every three months, it is a regular thing.

Why would the side of the valve towards the heart be the one likeliest to restenose?
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Postby Donnchadh » Fri Jul 22, 2011 1:37 pm

Dr. Makris' practice, before he ventured into treating CCSVI, basically consisted of keeping dialysis patient veins open. He stated that their veins were repeatedly dilated, so I wonder where the truth lies? Are some doctors being too conservative by not treating a patient for the second or third time?

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Postby Cece » Fri Jul 22, 2011 10:27 pm

Dr. Arata was saying this in his facebook note the other day:
I would prefer patients to have this procedure once and only once. That is why I THE most important thing when choosing a center is the quality, based on experience and outcomes, NOT the proximity or ease of scheduling. Patients have to understand that their first treatment is their best opportunity for a good result. Even when going to the best physician second, third or fourth procedures will not generate as good a response as the first treatment. I will continue to do the best I can to help people who have been treated elsewhere.

www.thisisms.com/ftopicp-169821.html#169821

Not sure what to think about this.
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Repeat Treatments

Postby gsiskin » Sat Jul 23, 2011 3:57 pm

I want to reiterate that caution is just a wise thing to do when it comes to repeat treatments. It's easy to say that the number of times a vein can be treated is "limitless", but the reality is that nobody with MS and CCSVI has been treated 8 times or 10 times so we really do not know what the upper limit of frequency is at this time. The other thing that is extremely important to say is that we absolutely cannot completely translate our experience with dialysis patients to MS/CCSVI. The veins in a dialysis patient are different. They have adapted to the high flow associated with dialysis in such a way that seems to make repeat treatment safe and straightforward. Not only is the internal jugular vein different, but the flow in the internal jugular vein is different enough to give some concern about repeat treatment. When you consider that in the context of not every patient doing well after repeat procedures (or as well as their first procedure as Dr. Arata said and I agree), then you have the basis for concern.
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Postby Cece » Sat Jul 23, 2011 6:56 pm

Thanks, Dr. Siskin.

I wonder if there is a period of time between CCSVI procedures that would give the vein time to recover?

It makes sense, the way you explain it, that these veins and the veins in dialysis might respond differently.
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Postby gsiskin » Sun Jul 24, 2011 4:30 am

That is what we hope to find out.
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Postby pklittle » Sun Jul 24, 2011 7:18 am

The veins in a dialysis patient are different. They have adapted to the high flow associated with dialysis in such a way that seems to make repeat treatment safe and straightforward.


Hi Dr. Siskin.. the timing of your post cautioning repeat treatments is uncanny for me.

I know next to nothing about dialysis.. maybe it has a host of it's own risks...but here's a question. I'm thinking outside the box here. Could being on dialysis possibly help MS symptoms? Would testing this be worthy?
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Postby zinamaria » Sun Jul 24, 2011 7:21 am

Welcome Dr. Siskin and thank you for that caution on repeat procedures. It does seem too early to tell whether or not there is increased risk or not with repeat procedures and it makes much sense that we cannot be compared with dialysis patients.

Thank you for your input.

Z
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Postby Cece » Sun Jul 24, 2011 8:34 am

I wonder too if this is true when putting aside any repeat procedures that are done due to complications and looking only at procedures that are of simple restenosis?

Also if precise sizing using IVUS might limit damage thus making repeat procedures more possible?
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