This Is MS Multiple Sclerosis Community: Knowledge & Support

My Dr. Eric S. from RGH will be given your info at my MRV on Wednesday.

I think I am the FIRST in Rochester that has started this ball rolling. I will research a few other doctors and find out if the Multiple Sclerosis Clinic at the University of Rochester has heard about CCSVI. That is where Dr. Goodman's office is who was one of the original researchers on getting Ampyra approved in March of this year. However, I'm sure that he would like to shut me up because he wants Ampyra to keep on helping MSers with "their walking speed" ONLY. lol

I'm not expecting much from my doctor/IR contacts. That may be their choice at THIS time; but that could change very quickly. (wink wink)

I have printed and cut "tag strips" and distribute to anyone who will listen to my excitement. I ask first if they know of anyone who has m.s. - and then I tell them to give them the tag. They are printed on both sides of a 3/4-inch x 4-1/4 inch piece of heavy bright green paper and I use 3/4-inch round green circles to stick them up wherever I decide would get attention, too.

side 1:

NEW LIFE for Multiple Sclerosis Patients
Cure or Help? http://tinyurl.com/y9c2uwy

side 2:

www.PatientsLikeMe.com Receive
CCSVI - "Liberation Treatment"


Let's get the word out! There's power in numbers.


LadyGazelle

I live in Australia, and had intra-cranial US performed in early 2009. There are people who do it, but as you have found, they aren't easy to find. Try hospitals and maybe stroke specialists. What's worse is that I spoke to one location that was learning it, but when I approached them about doing Zamboni's studies, they basically did not see a "market" for the testing; I didn't push it.

Any chance of issuing an early release to my doc? I go in for surg...um..I mean the "procedure" on July 27th.

Please get someone to video-tape this. Its fairly easy to convert to a video file and place on the net (that's an offer if you need the help) so everyone can see it around the world including those that can not attend. There are some good names in your list.

This "cutting balloon" really needs a less intrusive / violent name. I think my doc is a fan as well.

As I said above, I have a date for treatment with a local Dr I put you in contact with a few months ago. I know you are trying to build your "atlas" of images, I pm'd you regarding the possibility of getting my doc to make any specific images while I am on the table, for your needs; let me know.

I TOTALLY agree with CeCe! Just so you know, Dr S - breaking up is hard to do (wish I could do a musical note) and I''m still grieving over the IRB decision. BUT I suspect I will someday meet you in person and I continue to learn from you.

color=indigo]quote - Dr Sclafani:
i would use a high pressure balloon. if you had a sausage appearance with a high pressure balloon, a low pressure balloon is not going to do much.

Bars are places i go after work.....i think in atmospheres. moderate balloons go up to about 8 atm. high pressure balloons can go up to 40 atm or more.
if you are narrowing at the stent, ask your doctor is you should be on anticoagulation [color]

Thanks for your help Dr. Sclafani . Yes I'll be going to '6 bars' soon if I don't get this sorted out but I'll need to go to an ATM for money first!

Pauline

Dr S, altho sort of disappointed that you aren't going "rogue" yet, I am still very pleased that you are continuing with your input and advice to all the questions put up here. I now actually have a couple of things to ask about:
a) with the primer you've mentioned coming out in "Endovascular Today" and the Symposium you're holding July 26, might these two contribute to your IRB revisiting their desicion ?
and b) we got an e-mail from your office (?) re getting on your waiting list which included a "spread sheet" of questions: unfortunately my computer does not have the capability of filling this spread sheet out !!! Can I just provide the info as required without using the spread sheet ????
As I said in my earlier post, I really want my wife checked out, so I hope your can say "YES" to both my questions. Thanks.

i do not think they will revisit their decision. I am writing a new proposal that will undergo fresh assessment. But i will invite them to the symposium

please email holly and she can talk on the phone and help answer the survey

Just a quick thought, Dr. S. l know you have said that you plan to make your atlas a coffee table print book, but if you make it a net atlas, you could include moving pictures, and these are sometimes more instructive.

I just figured out how to post ONE of my doppler pictures from the CD they gave me showing the possible inverted valve in my jugular (or an "artifact"). I am very appreciative of your time, and it's not necessary for you to reply.

I'm just glad I figured out how to do it!


Thank you for the information you provided for me, and I will be faxing it to my IR so he will have it before I see him tomorrow for the first time. I hope he doesn't think of me as a PITA

This might be a prime opportunity to get on the good doctor's waiting list, here is the email:
ccsviliberation@gmail.com
Contact person is Holly Barr
She may or may not ask for your mother's maiden name, do not joke about it being tattooed on the inside of your jugulars, she not seem to find that as amusing as we did!

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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

Hi Doc! it has been 10 weeks since my Half liberation. I have lost pretty much all the benefits gain except for my legs stiffness. Never once since April 25 my legs bucckled after sitting or walking! I walk normally. which is great but the fatigue, pain, brain fog, etc never went.

I had also lost the motivation to continue battleling to get treated here in Canada and get my Azygos checked.

Your symposium and article announcements gave me back the courage to carry on. Thank you for not given up on us!

Do you know if Dr Kostecki from Tychy, Poland will be there? I have to decide if I should go back...

Hi Dr, I absolutely enjoy your intelligence, having the Symposium is the next best thing to standing in front of the IRB and giving them the 'bird salute'. Well done and thanks for your continued support of us wobblers and wheelers!
Enjoy your day

Dr. Sclafani:

Do you have a direct link to your symposium announcement? I could forward it to a couple of IR's here in the Midwest.

Donnchadh

Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?

And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".

Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!

Rhonda

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Procedure by DrS 5/3/11 SI

I just wonder how many IR's would take advantage of this opportunity. We give them the protocols and it's still difficult to get them to take action.

The IR has to pretty darn sure the IRB will approve this. Follow the money and see who accepts the offer to learn for free. It's not what they know, it's who will let them use their knowledge.

I don't WANT to be negative here - but someone has to be PRO-CCSVI for them to learn anything more than what their peers are telling them at this time.

I think there should be MONTHLY meetings where every IR will have an opportunity to be educated from the best as soon as possible... which most likely won't be urgent for THEM like it is for US.

LadyGazelle

Dr Sclafani.

South america? Could you be more specific?? I am from Argentina.

Thanks!