never mind-

cheerleader · Post by **cheerleader** » Mon Apr 05, 2010 11:30 am

carry on...

weegie1 · Post by **weegie1** » Mon Apr 05, 2010 11:56 am

Thank you for coming out with this Cheerleader.
It needed to be said.
CCSVI is in danger of becoming the new "health tourism" trip like hip replacements were a few years ago, and maybe still are.
The only thing is that "going local" is not as easy as it sounds.
But your thinking is on the button as usual.
Thanks!!!

ozarkcanoer · Post by **ozarkcanoer** » Mon Apr 05, 2010 12:08 pm

Hi cheer,

I totally agree with you. I am planning to go to BNAC for CCSVI testing, but my neuroradiologist is in St Louis. It has been slow for me and discouraging at times, I want to be treated at home !

ozarkcanoer

frodo · Post by **frodo** » Mon Apr 05, 2010 12:09 pm

I agree totally with cheer, but keep in mind that diagnosis is very difficult. And I would say that is easier to find a treatment at home when a stenosis or a defective valve have been found.

Maybe it is a good idea to find treatment at home AFTER diagnosis. Unless you can find somebody willing to get trained in Doppler ultrasounds.

Ruthless67 · Post by **Ruthless67** » Mon Apr 05, 2010 12:35 pm

Cheerleader,

Thank you for once again advocating for all MS patients.

It has come up on another thread here where Dr. Sclafani mentioned that he's learned from each and every procedure he has performed. I'm pretty sure that would be true for Prof. Dake, and the Polish team as well.

Let’s keep beating the bushes locally and flush these doctors out. We get additional reports, articles and research supporting a venous and MS connection everyday to present to them. If the CCSVI connection doesn’t work with that physician, than just step back one space and see if they will treat you just for your specific venous problem , maybe they will come around to CCSVI when they see the improvements it makes in your MS symptoms after the procedure.

I advocate locally for CCSVI every chance I get and do my best to tweak their interest. When I was in sales, I used to send out information to potential clients in an attempt to drum up business, it was called “cold calling” and sometimes it worked. I got one of my largest accounts that way. I realize it’s work and time & money are involved, but it can work! You really can spark interest that way. And there is a preponderance of information here at Tim’s to draw from. From protocols for proper diagnostics to examples of before & after MRV’s to share and research papers to present.

Respectfully,

Lora

We are now an educated, tough and determined bunch and we can do this!!!

Lol, ozarkcanoer, spell check just doesn't quite cut it sometimes. Reader's please insert TIMS for Tims's above.

ozarkcanoer · Post by **ozarkcanoer** » Mon Apr 05, 2010 12:46 pm

Ruthless,

I had to laugh after wondering who this wonderful guy called Tim is !

(hint : TIMS)

ozarkcanoer

CureIous · Post by **CureIous** » Mon Apr 05, 2010 1:25 pm

Yes, go local. Anyone can write a letter to the editor and get it printed, you can even do it online. That's 100,000+ readers in one click. Everyone knows someone who knows someone, so figure the sphere of influence works out to over 400,000, assuming everyone who reads gravitates towards the opinion section.
http://www.pe.com/localnews/opinion/letters_form.html

Just having a little fun with the numbers, but illustrating the power of the pen, or keyboard for this day and age. Not everyone has their nose in the net 24/7.... Plus it's nice to get a free plug in for the Alliance....

Imagine if just a couple hundred MS'ers got this, took it their collective doctors, who (at least in this area) seem to run in the same circles...
Mark

esta · Post by **esta** » Mon Apr 05, 2010 2:11 pm

hi all. i believe its still just too early at least in some countries, to wait. NOTHING is anywhere near close enough for the ones who are too far along to have the patience to wait a year or two...i understand we must be cautious, but "WE TAKES OUR CHANCES" in the long run, and until i see a glimmer of hope...poland, here i come. and if that doesn't work, i'd use my common sense but, i'd still go abroad. unfortunately Canada is where NOTHING is happening. hopefully, by follow up time, there'll be something,but if i have to borrow more money, i will. its my life!!!!

cheerleader · Post by **cheerleader** » Mon Apr 05, 2010 2:31 pm

carry on

Johnson · Post by **Johnson** » Mon Apr 05, 2010 2:53 pm

cheerleader wrote:Nice work, Mark! You're right, local newspapers are a great way to go. So many people saw that AP story--it's a good time to speak out.

esta- yes, it is your life. I just want to go on record--and make this suggestion to try local first. Cause it's kind of my fault Avis and CTV put the liberation story on in the first place, and I'd be remiss if I didn't speak out regarding my concerns. After almost a year since Jeff's treatment, we know so much more. And the fact of re-treatment for restenosis and follow-up is one of those revelations.
cheer

All appreciated Joan, but I would not characterize your involvement in "blowing the lid off", with Avis Favaro, as a fault. Quite the contrary. That W5 piece is what galvanized hundreds of thousands of people, and we have come a long way in a short 4 months. I had become resigned to my own fate, and was approaching despair until November 2009, and CTV's report.

Patients must take as much responsibility as doctors are expected too. What concerns me is that I think a lot of people are in "fix me!" mode, and close their eyes and ears to complications, contra-indications, etc. It is understandable, because we are a vulnerable population, but we must be discerning.

fogdweller · Post by **fogdweller** » Mon Apr 05, 2010 2:58 pm

I have been thinking about this too. Cheer, I think you are right on, but the frustration is that the treatment is generally not locally available. I am local to Stanford, and no treatment is available there anymore. I am not even sure if I can get diagnosis.

I am looking into the cost and what arrangements are necessary to go to Buffalo, where they know how to properly do the diagnosis, but it is going to have to be at my own expense. How much better if it could be locally available!!

I think our efforts, time and money can probably be most effectively spent on getting the diagnosis and treatment widely available and maybe even covered by insurance. I have some ideas on that topic, and plan to start a thread in the near future. In the meantime we need to keep the pressure on to get this diagnosis and treatment locally available.

patientx · Post by **patientx** » Mon Apr 05, 2010 3:23 pm

Johnson wrote:Patients must take as much responsibility as doctors are expected too.

Do you really feel this way?

coach · Post by **coach** » Mon Apr 05, 2010 3:42 pm

Well said Joan and other contributors. I unnderstand the urgency of those that are further along in the disease process. As Marie once said something to the effect on here that some are out of wait. Not sure where I'd be if I had not chosen to pursue this when I did. Was one of the last ones to get the surgery at Stanford before they halted them. Probably using a walker or wheelchair by now. My progression had gone into hyperspeed,

mrsilkykat · Post by **mrsilkykat** » Mon Apr 05, 2010 4:06 pm

Cheer,

What does that mean, "nevermind". You said what needs to be said. What's with "nevermind".

Johnson · Post by **Johnson** » Mon Apr 05, 2010 4:36 pm

patientx wrote:
Johnson wrote:Patients must take as much responsibility as doctors are expected too.
Do you really feel this way?

Yes.