This Is MS Multiple Sclerosis Community: Knowledge & Support

It's a long list too. Lots of contacts to make. Thanks, jay123.

I am not a pioneer by nature but I would like to feel better and this is something I want to pursue. I'm reminded of a Dr. Phil reference (sorry for the Dr. Phil reference) where he kept telling single women that if they're just going to work and going home, a guy would have to throw himself on their windshields in order to have a chance for romance. So, likewise, I don't see any open-minded IRs throwing themselves on my windshield!

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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

Cece,

Good analagy, thanks for the giggle.

Lora

I strongly believe in persisting with sending info to your local physicians. You'll benefit from having a specialist locally to develop a relationship. My advice is to mention the well-known physicians who are involved with CCSVI issues when you send material -- someone is likely to be connected to one of them! Best of luck to everyone.

Hey guys.

I'm so excited I could pee myself. I just got off the phone with an interventional neuroradiologist in my area. It was a very positive conversation. He seemed genuinely excited to be at the forefront of something so new and groundbreaking. And yet for him it is an everyday gravy job. He said he attended a conference in France recently and this is a very hot topic in the vascular world. He said it is going to be very bad for the pharmaceutical companies and for neurologists who have built a nice little industry out of "managing" MS.

I first tried emailing the hospital he works at but got no response. But not wanting to give up (I liked his credentials) I just called his office and waited to talk to a person. They took my information and he called me back within a week. He spoke with my wife first as I was out shopping. He then called me and we had a nice conversation in which he told me that as well as doing the MRV and possible intervention, he has a "lower end" specialist who will address the issue in her legs.

I am grateful to Dr. Dake for doing all he is doing for the cause of MS sufferers, and would have liked to have had him be the one to examine/treat Sharon. However, once the procedures were halted and the trials seemingly delayed, I began to seek other options. Because of all the people on this board who have done their share of trailblazing I figured no one was going to make this happen if I didn't get this into overdrive.

Meanwhile Sharon is in "not wanting to hear about it" mode. She has so little energy and is progressing so rapidly. Today, she drank coffee for her constipation and it tweaked her out big time. Once in a while I see a little sparkle of what is in there and get overwhelmed thinking "what if?" What if she could start to turn this thing around? What if she could have more good days than bad? We were tired of waiting and so here we go.

I am not posting the name of the hospital or the doctor because I don't want this to go on the radar screen just yet. Maybe it's selfish, but we want to get in there first before the storm starts for him as it did for Dr. Dake. If anyone is in Northern CA and needs to find a good vascular surgeon PM me and I will let you know this guys name after you've been sworn to secrecy.



Keep working guys, it's working!
Andrew

Congratulations Hoodyup! I hope that things go your way with this! I know it's tough to be the caregiver sometimes.

I think it's alright to not post the dr's name.

Good Luck,
Theresa

Andrew,

I hope that this works ! it's NOT selfish. Just think, if Sharon is treated successfully by this doctor then just think of all the doors that you are opening for other people with MS ! Keep fighting !!

ozarkcanoer

I took the advice to heart last Friday and typed and sent 20 letters to the heads of the respective departments in mostly Interventional Radiology, but also Vascular surgeons, Radiologists, Neurologists to a couple of the top teaching schools/hospitals in South Florida and a TOP institution in Northern Florida. I suspect that the letters hit most of their desks today, 2/9/2010, and I already received my first phone call from an interventional radiologist and I have an appointment to see him in a few days. I am so grateful to GetActive who got me motivated to start taking action with this new information about CCSVI. I have also been in contact with Dr. Mark Haacke who is in Detroit which is where I am from originally (go Tigers!). Dr. Haacke can be seen on those CTV (Canadian TV) videos about CCSVI with Dr. Zamboni. They just had a great conference with Dr. Zamboni and Dr. Dake and many other doctors up in Hamilton, Ontario, Canada which is like an hour or two away from Detroit. These are the doctors that are our heroes guys and gals. Look, I don't know about the rest of you but in the past two weeks since I found out about CCSVI I am so thoroughly convinced that Dr. Zamboni is on to something so big and it's good science and makes good common sense that even if, for whatever reason, this interventional radiologist that I am going to meet with in a few days says that he won't test my veins to see if they are stenosed (which I know they are) then I am still not going to give up looking and knocking and emailing and calling other doctors until somebody else says yes. I have suffered such extreme pain in my body mostly my head and extreme dizziness and I'm such a jerk with my sweet wife sometimes when I'm not feeling good and six years ago I lost the hearing in one ear (oh except for the lovely tinitus that goes on 24/7/365 in it), nevertheless I am going to just fight this till the death of it. My prayers to you caretakers like hoodyup and the many others who have loved ones suffering with this sick, stupid disease. My neurologist tells me that I am compulsive because I don't want to take "you have to learn to live with this (MS), it's your new life" for an answer. Well I guess that is just not in my DNA because I'm not satisfied with just "managing" the MS with Tysabri or any other drug, I want it gone from my life. I don't want drugs. I want to beat MS!

We Will Beat MS.

Please visit this webpage:

http://ccsvivictory.club.officelive.com ... onnel.aspx

The program gathering this information will automatically sort the entries by location. It would be awesome to have a complete list of all medical personnel that are being contacted, and are prescribing treatment for, testing, and treating CCSVI. The database where this information is sent is awesome! We can sort the information by Continent, country, state, zip code, etc. Then, we can make lists specific for a certain area. You can download this information to your computer, and do all sorts of things with it, such as print address labels, etc...

We will also have the ability to group e-mails and then write one message for a whole list of medical personnel to receive! However, each receiver will not see the other e-mail address it was sent to!

We can also gather a collection of sample letters that people can copy and paste, e-mail, or print out.

Stop by the important tab while you are at it, and let your voice be heard.

http://ccsvivictory.club.officelive.com/Important.aspx

I appreciate your help in this effort.

Vonna

Get Active,
I wanted to tell you thank you for starting this thread.
It's people like you that inspire people like me!

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

If you are in WA State, please join (CCSVI Washington), so we can team up!

I will be speaking at my MS support group this May, Edmonds WA, date and address to follow. Any and all are welcome, let's put our heads together!

Lavonna has taken up Joan's call to "Go Local" and assisted all of us by establishing a FB group for each state. Go to (CCSVI Worldwide Victory) to find the FB group for your State.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

Having fb groups by state is a great idea! I am off to check it out.

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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 Sammy Jo and CiCi,
Thank you for posting this Sammy Jo, I really appreciate it!
I have been working on making it easier to find the groups by state.
You can visit here, then just look for your state.

http://ccsviworldwidevictory.com/FacebookGroups.aspx

Hope this helps,
Vonna

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

I have already posted this link in other thread, but I think it makes sense here. People looking for an IR can try to do it through their local IR association. Here there is a list.

http://www.sirweb.org/about-us/IRSocietiesAroundTheWorld.shtml

Also you could try to find similar associations, like cardiology, phlebology, laparoscopy and minimally invasive cirugy.

I have tried and it is not easy, but maybe some of you find something.
Edit: Other intersting association: http://www.scvir.org/

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Here is a very helpful site for interventional radiologist listed by state.

http://www.ucomparehealthcare.com/drs/i ... iologists/

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

Here I post some cardiology association links that I have found. Not so interesting as the IR associations, but worth trying.

<shortened url>

Maybe it is enough to contact them asking for a Doppler in your city (no need to scare them with tons of info in the beginning. The person replying the e-mail will not be a doctor) and tell them to forward the e-mail to their affiliates. They are supposed to do this kind of things. If somebody replies, then it is time to send the articles about CCSVI.

Here I post some others lists of organizations that I have found

First, about "percutaneous vascular interventions associations"
<shortened url>

and other about interventional cardiology
http://www.scai.org/International/Partners.aspx

and some direct links:
http://www.acc.org/about/contact_acc/contact_acc_dc.htm
http://www.americanheart.org/presenter.jhtml?identifier=1200000
http://www.escardio.org/Pages/index.aspx

and the European Society of Minimally Invasive Neurological Therapy
http://www.esmint.eu/cms/website.php?id=/en/society.htm

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info