This Is MS Multiple Sclerosis Community: Knowledge & Support

Excellent symposium today, thank you!

Many questions answered. Particularly intriguing where the results from Bulgaria which seem to justify treatment benefit and corroborate Zamboni to a large extent.

This is all incredibly encouraging. Thanks for such a great effort in creating such a useful discourse between interventionalists in different centres.

Dr. Sclafani, I hope you educated them all at your Symposium today.

Thank you so much for taking the time in your busy schedule to monitor and answer questions from MSers. I think it's safe to say we all love you, and the information you provide is invaluable. I'm on your list for the procedure and do have a question concerning old and new MS plaques. My last MRI report demonstrated "extensive bihemispheric periventricular and deep white matter lesions", along with some other findings. I just googled it, and the first words in the abstract were "Abnormal cerebral venous drainage". I don't understand much of the medical jargon, but this did jump out at me. The MRI is five years old, but I've had symptoms for a very, very long time. I'm trying to ask a question, but don't know quite how to word it. I guess I'm trying to ask if the damage is old, am I less likely to respond to a CCSVI procedure ?

CeCe, I continue to be impressed with your knowledge. You obviously have a background in the medical field. If you have any thoughts, please feel free to jump in.

Thank you, thank you, thank you to Dr. S. for all that you do. I stumbled onto this site a few weeks ago and have been a visitor several times a day since then. Thank you to everyone that contributes to this blog and shares their story. We learn from each other, and it helps to know you're not alone.

This is my first blog posting. I hope it ends up where it should.

LadyGazelle, tinyurl.com allows you to make custom url's. Much easier than a string of random numbers and letters. For example, for the EVT article, I made one as follows: http://tinyurl.com/EVTarticle-CCSVI. Still not catchy enough, but you can probably think of something good!

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dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

Was really interested in hearing how the symposium went yesterday.Dr.Siskin spoke and I am anxious to know if anyone has a website where this is shown in its entireity. tks very any help you can give

The symposium was tremendous. Dr. Siskin is a wonderful speaker and is extremely pragmatic. The symposium was taped by several people - Dr. S had it recorded, the CCSVI Alliance did, as did GirlGeek33 who will probably be the first to post it.

Is it Multiple Sclerosis or CCSVI? Get tested!
Questions & Donations: Page 800-245-1323

ThisIsMS forum: tinyurl.com/helpdoctor
MS & CCSVI forum: PatientsLikeMe.com

Endovascular Today: tinyurl.com/EVToday
Dr. Zamboni videos: tinyurl/ZamboniWT5

Working on it!

First video and other postings can be found here:

http://www.facebook.com/pages/CCSVI-MS- ... 064?ref=ts

I'm working on the others, but since they are larger files, had to shop around for sites. When I have a link, I'll post it. I'm sure the other videos will show more than mine...

Tks Bestadmom and Girlgeek33, you guys are great. I can't wait to see the videos, I will be havong my liberation on Aug.24th in Albany and wanted to hear what Dr.Siskin had to say re; stents........would love to hear from people who were treated by him, and what their improvements were, whether good or bad?

Tks for any help shared, as I am starting to become nervous as my time gets closer, I think I need to hear the good and the bad

I would like to ask for donations and help people with multiple sclerosis from donations as they reach $500 for incidental expenses... on a first come first served basis. I googled "Is it ok to ask for donations?" which you can do too.

I make up tags that are 1/2" x 4-1/4" (convenient size).

SIDE ONE
Is it Multiple Sclerosis or CCSVI? Get tested!
ThisIsMS forum: tinyurl.com/helpdoctor
Endovascular Today: tinyurl.com/EVToday

SIDE TWO
Questions & Donations: Page 800-245-1323
MS & CCSVI forum: PatientsLikeMe.com
Dr. Zamboni videos: tinyurl/ZamboniWT5


Thanks MS_mama for the suggestion with the TINYURL - this is great!
The $500 is expected to be returned eventually to help provide LIBERATION FOR ALL.

We have to work together on this - NOW.

Thanks for that! I look forwards to the rest.

No, nada on the medical background. I suspect Nunzio might? My way of coping with my diagnosis four years ago was to read and research everything on MS. And when I got to the bottom of everything, it did not come together. Then, this past January, when I learned about CCSVI, it did. So now I am still trying to read and research to the depths of CCSVI, but it makes for a much more satisfying journey.

But for your question, I don't really know. DrS had seen some good results in people who are secondary progressive, so that is promising? I would think many lesions in secondary progressive would be older.


Thank you for posting these and for your updates yesterday! Can't wait for more and for Dr. Sclafani to return and give us his take on everything.

Dr. Sclafani, here is a question: is there any harm in Dr. Sinan's method of ballooning all of the azygous on everyone (as I understand it)? If there is no harm, then I really like that strategy. Also if he is using larger balloons, is there any risk to that and is there a benefit? Are these strategies you would consider using?

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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

My wife is heading for Poland for treatment in August by Simka's team and I wondered what documents and images she needs to come away from there with to provide a basis for local follow-up as well as to provide local neurologists with information that may help them better understand CCSVI.

I'm starting with a clean slate as far details of the specific images, recordings that are routinely part of treatment and examination.

Simka does by MRV and doppler u/s pre-intervention. I've seen many of the images created during intervention. Is this an on-going recording, or a series of individual images?

Thanks!

Sorry i have been away unable to answer questions. I have been so busy. putting on this symposium in just a few weeks, getting the crowd out, thanks in part to you guys, with such short notice was miraculous. But last minute details are not to be underestimated. I have never done anything like this before.

There has been lots on the thread while I have been busy, but a lot is not questions and i think that as this thread gets larger, it becomes important that we focus on questions and answers, otherwise the purpose will be lost in a sea of other agendas. I would ask that some of the chatter quiet down for a while. I have a lot to report and i am sure it will lead to a lot of questions that will need answering. I certainly learned a lot.

Spending the weekend with Fabrizio was a joy. He is such a gentle man, full of character, intelligence and compassion. Fabrizio Salvi is the other half of the CCSVI story. While Paolo gets all the acolades, fabrizio cares for the patients,working long hours in a city hospital.

I do not want to be misunderstood. I highly esteem Paolo Zamboni, a genius who is the orchestrator and prolific scientific writer. He deserves all the credit he receives for his unconventional out of the box thinking and research to support it. He is the consumate team builder.

Its just that Dr. Salvi does not get the credit he deserves. And his journey to altruism was a remarkable one. i wish i could share it. suffice it to say, that he is giving back and feels that if you have an opoortunity like this, you hold on to it as a precious thing that comes around infrequently. After arrival in nyc on sat night, we hung out for a while, then he went to bed and i worked on my lectures.

Then i ran to the stores to get breakfast and lunch for a group of us who were going to work on setting up the ISNVD, the International Society of Neurovascular Disease, a scientific organization to study neurovascular disease. We agreed that all NV disease would be our focus, but that ccsvi would be a particularly detailed focus early one. We need to organization to focus research, to share that research and to create consensus. Also attending the meeting were robert zivadinov, mark haacke, david hubbard and mark Godley and fabrizio and his assistant Alarea. On the conference call were franz shelling, paolo, and someone whom i do not know. finally mike dake made a short communication but was on vacation at this time and left early.

So we now have an academic voice. Paolo will be the first president. This will be good.

The afternoon resulted in a three hour tour of new york city for fabrizio and alarea... as only a new yawker could do it.....Brooklyn Bridge, Word Trade Center, Lincoln Center, thru Central park to fifit avene. A short stop for shopping in Tiffany, then back around west and north and then down the Great White Way, on Broadway to Times Square. Then down to greenwich village, on to soho, then china town before going across the manhattan bridge and down to the river cafe to celebrate my new friends arrival, then a quick trip back to the house in the hopes of finding ivo petrov (to no avail) and then back to manhattan for dinner at the Primehouse.

A great evening for us before the work tomorrow UNofrtunately my second lecture was not finished so i tried to finish it before i went to bed. but the most excellent food and wine, rendered me incapable of keeping my eyes open. so to bed at 1 and up at 5 to get the lecture completed.

but enough to day....any questions on what i have written so far.

edit

Does the above photo somehow represent a question for Dr. Sclafani

NHE