This Is MS Multiple Sclerosis Community: Knowledge & Support

I started this thread one week ago. I had visited the site to hear what patients thought about ccsvi. I was troubled by some assertions that were misleading or inaccurate. I saw a community that was as desparately seeking answers as i was.

I decided to weigh in thinking that a few answers might set things straight. The response was far more than i imagined. I was humbled by the appreciation that came forth and i was proud of the inspiration i was bringing and receiving.

So a week later and almost 11,000 hits. As someone told me, that was more than even the Kamikaze gets!

It is a bit frightening to realize the role i have taken as a medical professional helping answer some questions and concerns. Damn good ones too.

I guess i am in this for the rest of my career so thanks to all who have made me involved in this, including michelle , marc , mitch. neen, cheryle, jason and holly

have a great night

Dear Dr. Sclafani,

You are welcome.

Michelle, the crazy lady with MS, who is NOT madame lurker

I think...it is somewhat unheard of...for a doctor to make himself this available on a forum such as this. But you seem to be a doctor who does unheard-of things.

And you mention the appreciation we have shown already for your answers and presence here, then say that you'll be in this for the rest of your career...how do we even begin to show appreciation for that?

I am scheduled with you for procedure on May 5th, I look forward to meeting you in person.

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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

Dr. Sclafani, you're very welcome, but the thanks belongs to you for putting your butt on the line and picking up the CCSVI ball and running with it.

Even though I'm jealous that your thread gets more hits than my site, and you are a fan of evil on Earth incarnate (the New York Yankees), you have my everlasting gratitude...

BTW, I'm not madame lurker, either...

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Marc
www.wheelchairkamikaze.com

Hello,
I'm a little clueless on the "known lurker" statement.
This person honestly cannot seem to post here. I posted this message for them the first part of this month, asking for technical help. This issue was never resolved, so I was asked to post the question.
http://www.thisisms.com/ftopict-10507.html
I just wanted to clear this up so that I am not taken as doing something underhanded.
I truly appreciate everything you are doing for all of us Dr. Sclafani.
I have not had the privileged of being tested or treated for CCSVI.

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Together, our voices are louder!
http://ccsvivictory.club.officelive.com/default.aspx

Dear Dr. Sclafani,
Thank you for chiming in here. You are an inspiration to all of us. I'll be seeing you the 2nd week of May.
Reading and watching this thread, one thing became apparent. While we are getting desperately needed answers to questions that are not otherwise available, you are getting some useful information also. WE LIKE THAT! To us that means that your head is not buried in the sand. The internet is HUGE and you have a 'team' of information gatherers and translators at your disposal. Use us !!! We are more than happy to help and 'give back'. You have a small 'army' at your disposal, use us. Remember, a lot of us are stuck home all day long everyday. We have nothing better to do. You would actually be doing us a favor by making us feel useful ! And being able to contribute to the 'cure', well, you don't even have to ask. There will be a line of people willing to help in any way we can. I'm at the front

Hopefully other doctors will see the power that you were able to release (without a whole lot of effort). The benefits to both of us are staggering.

Sincerely,
Larry Motylinski

Dear Doctor, thank you VERY much!
I guess it's better to ask a silly question than not asking at all since there is someone really serious here to respond.

Given the fact i have cervical lesions (c2 and c4-c5) and no brain lesions (yet) would it be safe to make the assumption that the problem lays somewhere there IF CCSVI applies to me? Especially for the C4-C5 problem, from what you told us, it is more likely to connect with the azygous and NOT the Jugular veins. Goodbye doppler haha
On the other hand, you wrote: There are also veins that connect the cervical plexuses to the upper jugular vein itself. What's the deal?
Umm, maybe upper cervical spine drains to the Juggs and lower to the Azygous? Couldn't God make it a bit more simple?

I know you have already heard a billion thanks but i guess one more wouldn't hurt whatsoever, so thank you.

Costumenastional, very interesting. And thanks doc indeed for explanation. Dr Schelling advised me on a similar issue, as my major plaques just as in C-n. case in the cervical area...while brain - at least 4 years ago - only had small spotty lesions in the white matter. Dr Schelling advised me to do a new MRI (of brain) and also MRV, to better understand the issue - and I have both scheduled now in next 2 months. The diagnosed jugular valve issue (slow blood flow) might not be related to my lesions...but it might to maybe new lesions in my brain or other symptoms such as fatigue, and noone can know that yet...

Dr Schelling also pointed out that there are many other veins that might be affected and could relate to spinal cord CCSVI issues (eg lumbal veins and their connections to the lower "Hohlvene" - so not not only the thorax azygos). It's just that the azygos is currently examined in the conventional phlebography, while I was told that Haake is still busy on working out MRV of venous spinal cord drainages, and further research on this needed.

This makes a lot of sense - why should only two type of veins (jugular and azygos) be affected in CCSVI? - very likely more other veins will be stenosed, just that we do not know as protocols not worked out for those yet. Since work is on its way, that gives me hope for the future and I cannot express how much I admire you all Dr Sclafani, Haake, Schelling and other researchers working on this for the commitment within practical and/or study terms you dedicate to dig deeper into this!

Yes Zeureka. It seems that for some it will be far more complicated than Dr Zamboni initialy suggested. Shame that time is working against us...

Dr also wrote:
"These plexuses connect up and down the spine. Some then drain out into larger more defined veins. These veins can drain upward into the brain and then back down the venous sinues to the jugular vein."

Can you imagine? From the spinal cord back to the brain and off to the jugs before blood finds its way to the heart. At least this is what i understood.

Fantastic that we have a specialist to clarify. Sure helps to keep our feet to the ground...

I really appreciate your participation in this topic Dr Sclafani, I am learning alot.

I have had the doppler scan, and there is a stenosis, yet I am not scheduled until the 11th of May for my consultation with the Prof (I'd imagine the procedure would follow fairly soon after the initial consultation). Is there anything I can do in the meantime to address the stenosis? Unfortunately I feel as though new symptoms are popping up every week, the last thing I want is to have a major relapse before the procedure is performed. My mobilty is still ok at the moment (I'm able to jog for a few km's, and run a little bit), so if I can stay at this level until May, I would be happy.

Thanks for the call-out Dr. Sclafani. By the time we had our post-procedure meeting last week it was clear to me that you are a different sort of doctor, and I mean that in the best possible way.

You could coast into retirement if you were so inclined, and deservedly so, but we're all fortunate that instead you've decided to dive into CCSVI.

Your involvement in diagnosis and treatment, and your willingness to speak directly with us on this board has energized our little cause.

Thanks so much.

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Mitch
Please visit my blog at www.enjoyingtheride.com

Costumernastional I get the point you're making - obviously a bit of disappointment after the great news of CCSVI to maybe resolve all our symptoms, but now that start to understand the situation better I start to see it more positive:

Great that time is working for us!

For me it's always important to understand the facts - that already makes me feel better and I have more faith in what can expect us in the near future! Also all this just confirms to me that CCSVI can just not be just a theory (I'm always very sceptical to start with) and that we are half-way...already for the doppler I was nearly sure nothing would be found...and the result surprised me (of course positively). Should I feel improvements on fatigue/cloudy brain or insensivity issues after jugular intervention I can assure you from my basic character that it will NOT BE PLACEBO EFFECT

While i do not wish to fill this thread with my nonsense, i feel (and i hope Dr Sclafani will comment) that only the primary veins currently investigated would result in MS lesions AND this "global" feeling of fatigue, speech and vision problems. Even my tinitus started when upon diagnosis i have had a five day course of solymedrol. A coinsidence?

Anyway, all i am trying to say is that i hope that problems in "secondary" smaller veins may not be as catastrophic for us since its gonna take a while for scientists to diagnose and treat.

Zeureka, keep smiling girl.

You are very welcome Dr. Sclfani! However, we should be thanking you! Thank you for reading the email from "the crazy lady with MS," reading the research and then diving in to this to help all of us suffering with MS. As EnjoyingTheRide said you could have been coasting in to retirement but here you are dedicated and determined to help all of us. You truly are an incredible doctor and a wonderful person. Thank you!

neen

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javaneen

Thank you so very much Sir. We need more people like you on this planet of ours!

Best Regards

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RRMS diagnosed '92; both IJVs ballooned and stent in azygos March 31st in Katowice, Poland.