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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

appt today w/vascular doctor

Well Dr Razavi was very nice. I took my mri and he said it looks like MS to him.(I'm in limbo)

He then asked what brought us to his office? Well my husband explained everything to him better then I ever could thankfully.

He was very surprised that we knew about CCSVI and asked where I had found the information since it is all so new. I told him and he mentioned that he has ...
Read more : appt today w/vascular doctor | Views : 1479 | Replies : 14


MS but not a single stenosis?! Help!

Hi to all from Germany!

I start reading this forum a few weeks ago and its great. I ever hoped to find a forum like this!

After reading the Zamboni papers and the posts of the luky ones who had been treaten by dr Dake, i i wanted to call him by myselfe and travel all the way to Stanford. But first i had the chance to get an MRV done here in Germany. This ...
Read more : MS but not a single stenosis?! Help! | Views : 2416 | Replies : 17


New Patient=ME

I am officially scheduled for testing on October 16th and consult/procedure on October 19th!
Yes, there is a torturous weekend in between! And, I have been told I will not get my results, even if I ask:(
I am thrilled to be going so quickly. I think my flexibility and some scheduling changes acted in my favor. But that is just a guess. I booked my flight last night. I still have hotel arrangements to ...
Read more : New Patient=ME | Views : 973 | Replies : 6


CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

I just stumbled on this active trial in Buffalo yesterday and immediately looked into it. It's designed to evaluate blood flood in MS patients, healthy controls, and controls with other neurological disorders.The acronym stands for "Combined Transcranial and Extracranial Venous Doppler evaluation in multiple sclerosis and related diseases (CTEVD study)". Has anyone else signed up for this? I contacted them yesterday and am awaiting my phone interview. Very exciting news!!!

So now, I have a ...
Read more : CTEVD Study at Buffalo Neuroimaging Center (CCSVI related) | Views : 10870 | Replies : 75


I'm early, but travel advice...

Whats the cheapest airport to fly in to, how long should I plan on staying, should I rent a car, and how about a hotel? I think I read somewhere that the Sheraton (with the Staford rate) was the best hotel to stay at.
My wife will probably be coming with me. She has a week off work in February, I'm thinking of trying to schedule then. I think too much though, it keeps going ...
Read more : I'm early, but travel advice... | Views : 815 | Replies : 3


NIH getting a portion of the 5 billion for medical research.

Wonder how hard it would be to divert a wee bit of that over to the CCSVI paradigm....

Gotta be some way to get a couple 2 or 20 million of that, come on it's peanuts!

http://news.yahoo.com/s/ap/20090930/ap_ ... _obama_nih


Altogether, the stimulus bill included $10 billion for NIH. More than $1 billion of it would be directed to work on genetic research that could identify the causes and cures ...
Read more : NIH getting a portion of the 5 billion for medical research. | Views : 772 | Replies : 0


Magoo

Wow! We do have close dates. Is your Oct.19 procedure am or pm?
I don't have my times yet. except procedure is Oct. 20, PM.

Glad you have friends and family in the area.

We receive the test results and consultation on the same day as Radiology/Testing, is that correct? Otherwise, there is no procedure indicated?
Still learning, Rose
Read more : Magoo | Views : 975 | Replies : 4


CCSVI and pain?

Hi all. I am pretty new to this forum and have been reading about CCSVI with interest. I don't really understand it very well, and I haven't been able to read through everyone's posts, but I did print off some of the research to give to my neuro when I see him in 2 weeks. I'm not sure how receptive he will be but I'll give it a try.

Today, I saw my pain management ...
Read more : CCSVI and pain? | Views : 821 | Replies : 2


Surgery complication that I had - verified by another

Well I have to post about my shoulder you've all heard me bitching about. With Marie's help :wink: , I finally thought it worthy of being checked out and I am going to write about it here. I was hesitant at first because I figured this would be pile on fodder, shell game for Bob to say it's not a good idea because there are some potential ...
Read more : Surgery complication that I had - verified by another | Views : 2988 | Replies : 26


Tracking Results

I've seen some discussion on tracking results. The text based patient logs are great for those of us who are going to do this procedure and need to know every detail. But for trying to show results to the outside world, a picture that sums up 10, 15, 20 years of MS history and interventions is helpful.

Here is my homemade version, pegged to EDSS scale
http://healingpowernow.com/images/SJW_EDSS.JPG

Then PatientsLikeMe.com ...
Read more : Tracking Results | Views : 9377 | Replies : 47


 

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