This Is MS Multiple Sclerosis Knowledge & Support Community

drsclafani wrote:
The IRs in new york city have monthly meetings. I have shared my experience about ccsvi with them twice. once when everyone looked like they were staring at a wall. the other when they asked interesting questions.

i have invited dr sinan to share his experiences in kuwait with us in july. we are thinking of putting on a minisymposiumwhile he is at downstate/kings county. that would be agood way to get some of the IRs and maybe even a neurologist or two more informed.

but actually when we talk on the phone we talk about the weather, the Yankees and the hot nurse on 4 West

Do you need any Liberated MSers to come speak of our improvements?

Dr. S.,
I, like many others, are waiting to take that quiz. You mentioned something about giving it to the students also. Might I suggest you give it to us first. We might have some suggestions for changes that will make it better. Remember, you have a small army at your disposal. Post a preliminary copy here first and we can proof read it for you. A few here can even translate it into different languages for you.

I was thinking 'I wonder how many of your colleagues have this power at their disposal ?' If I expand the answer to include all doctors in the entire world, I would have to say none. Not only would we do it for free, more than likely we will thank you for letting us take part in this endeavor. So don't think that your taking advantage of us (or something like that). On the contrary, we would be honored to help !!!!

Larry

but actually when we talk on the phone we talk about the weather, the Yankees and the hot nurse on 4 West

Hey! That hot nurse on 4 West is my cousin...

SofiaK wrote:Why would blood thinners be needed because of treatment?
Did Dr. Zamboni ever use them? I don't recall this.

ballooning the vein causes trauma to it. it opens the lining and exposes the muscle layer to the blood. this can lead to clotting. therefore the blood thinners are needed until the lining heals. Dr. Zamboni used blood thinners for a few weeks , i think two or three. I am using them for three weeks. others use aspirin which prevents the platelets from ssticking to the wall as the initial line of bodily defense fro the injury we cause by venoplasty

Johnnymac wrote:Thanks for the message doc.

Another poster on here recently reported improvement of symptoms by doing Valsalva. Could this be a dangerous thing to do repeatedly? What's your take on Valsalva as therapy?

without randomized trials, who can say?

we have ibt, which appears to work by enhancing flow back to the heart and now we have valsalva which increases resistance to to flow back to the heart.

In my mind, ibt seems to make physiological sense, but valsalva appears to make no sense. If Ricci did this the outcome would be very bad i think. For the rest of you, i would think that this is not a good idea either

North52 wrote:Dr. Sclafani,

Do you think it is really possible to do a truly blinded study of balloon angioplasty in MS patients? I see a number of obstacles that may be difficult to overcome. Ballooned patients seem to feel the ballooning procedure which would decrease the effectiveness of blinding. Deep consious sedation could potentially alleviate this problem, but I suspect this is probably not ethical as it may increase the procedural risk. Another way around it would be to balloon a normal portion of the vein in controls so they feel the procedure, but again I suspect this is not ethical.

Another problem I forsee is that sham patients would want to know if they were sham. They could always get a doppler done on their own to see if they still have any decreased flow. I suspect you will gradually lose your control group over time. One answer to this problem would be to to do a short term study, eg 3 months and look at variables that respond immediately to angio such as fatigue, cognition and perhaps immediate improvement in strength, vision etc. By doing a short term study, you can offer the sham group balloon angio after the 3 months and use them as your treatment arm. This way anyone entering the study would be offered ballooning within a 3 month period. If results are convicing and are shown to be safe, for eg in reduction of fatigue, that may provide sufficient evidence for the medical community to condone this procedure.

Curious to hear your thoughts on this.

North

When i was first considering performing liberation back in September 2009 , i had a meeting with dr aaron miller and fred lublin from mt sinai medical center in manhattan. Not being very well versed in MS, i sought them out to get their take on the subject of ccsvi. They were very skeptical and most concerned about a treatment that had not gone through the type of evaluation and study that they were used to. They did not buy into much of Paolo's work. But they were extraordinarily bright men, passionate about their patients and very knowledgable about MS

i remember dr milller asking me " putting aside our objections and doubts, how would you design a trial?" We spoke about this for a long time. The idea of sham operations seemed, as you say, to be a necessary component. But how to ethically and humanely, operate on people without treating them? While I can do the procedure under local anesthesia, i would need to put patients under deep sedation at the least so that none would know whether the balloon had been inflated. Another component of a trial that would not likely pass IRB approval.

then came the most important component. Who will pay? Many $millions would be necessary to fund a large multicenter trial. Who has the deep pockets? and Who would fund it without more information than a case series without real control of 65 patients, less than half of whom had durable results. is unlikely to happen until AFTER there is more cohort studies, and the many wrinkles are worked out.

My daughter, who is 20 and in college, is experiencing MS type symptoms. It is not the first time. ....At 14, we went to a great pediatric neuro at UMDNJ and he ran tests and found no lesions, therefore no MS. Now, she's older, seen me go through tougher times and she's scared. For 6 months we've been talking about he getting tested, and the sooner the better since she would be offered a better chance at a very normal life with treatment.

Hey, i am optimistic but we need to be reasoned about liberation. Offering a "better chance of a normal life with treatment" to a college student is something i would not say to her at this point. Best I would do is do non-invasive testing but would not offer the Gold Standard invasive testing.

While my gut is telling me that you are going to turn out to be right, we need to slow down a bit and gather more evidence before we muck around in a teenagers veins.

One other point, There are so many MSers needing testing and care. how can we use resources on someone not diagnosed with MS before them?

side from telling you this anecdote, I do have questions. My doctor wanted me to take daily aspirin because he was still concerned about the high d-dimer. So is it a problem to be taking daily aspirin if you're going to have a venogram? When would you have to stop daily aspirin to make sure it wouldn't affect any invasive procedure? What do you think about tracking d-dimer -- do you use this test?

i keep expenses down to a minimum so i am doing as little blood work as necessary.
Aspirin reduces the stickiness of platelets the first line of defense for blood vessel injury, like what happens in venoplasty. But we are going into a low pressure systsem and i would not hesitate to do the procedure on someone who is on aspirin and would not ask them to stop before the procedure

So with so many of us having children, maybe we can harness our collective love for our families and our collaborative abilities and come up with something we can actually do about this? I can't think anymore, but I can offer my gratitude and my experience. Anything we can do to help.

What troops surround me!
in good time. i am working on the peds and the peds neuro......slowly and surely

Again, me being so not a doctor but "legal", was wondering can one scan with a ultrasound the intracranial venes?
And even so I am a lwayer I would never go after you;-)) and hope your "legal eagles" will also appreciate what you are doing:-))

there is a "strong" probe that can get through the bone of the skull to see those veins.

i am glad that i have a protector in germany now

SofiaK wrote:Dear Dr S:

When you return to work on CCSVI in a month or so, after approval, will you be doing testing only or treatments at the same time too?

Thank you so much for sharing with us your insights and expertise.
You have not only a great mind, but also a wonderful spirit. Truly, you are an angel.

Smiles,
Sofia

sofia
i am a believer that the testing is a minor component of what we do. I think all MSers need venograms.

so to answer your question, i am going to treat right away....i am chomping at the bit

Cece wrote:

drsclafani wrote:reflux in the vertebral vein bothers me. , just do not know what to do about it yet

I remember you mentioning this before...is it that the vertebral veins get too small to do the balloon angioplasty on them?

cece
yes, they are small and they are a conduit to bypass obstructing jugular veins. I do not want to harm them. i

hey cece, you catching up is like de ja vu

girlgeek33 wrote:

drsclafani wrote:
The IRs in new york city have monthly meetings. I have shared my experience about ccsvi with them twice. once when everyone looked like they were staring at a wall. the other when they asked interesting questions.

i have invited dr sinan to share his experiences in kuwait with us in july. we are thinking of putting on a minisymposiumwhile he is at downstate/kings county. that would be agood way to get some of the IRs and maybe even a neurologist or two more informed.

but actually when we talk on the phone we talk about the weather, the Yankees and the hot nurse on 4 West

Do you need any Liberated MSers to come speak of our improvements?

i certainly do need to hear about the improvements. I remain skeptical.
i am thinking about how to bring the liberated to a forum. new york in july?

jb
christopher columbus was an italian, if i might brag a bit......

the neuros say that there are other diseases that also lead to iron deposition. zivadinov might need to prove it with another population[/quote]

HAHA Good one Dr. S what can I say Dr. S (brain fog) (brain Fog) Its killing me Can't think straight !!!!!! Lets hope when your up and running you can fix it..... Lol

Dr,
Suppose in a couple of months or years, the stent is a problem. It's damaged or it has to be removed for reson xyz. Can it be removed?