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

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 : 1545 | 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 : 13438 | 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 : 1263 | 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! ... _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 : 1053 | Replies : 0


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 : 1399 | 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 : 1195 | 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 : 3985 | 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

Then ...
Read more : Tracking Results | Views : 11297 | Replies : 47

How much for CCSVI treatment - Dr. Dake or Dr. Simka?

I am really convinced by CCSVI.

I doubt my neuro is going to be much enthused about it and I am considering just pushing ahead and travelling for the investigations and possible stents needed.

How much does it generally cost for the full investigations & treatment? Ireland is in the EU so not sure if that has any relevance.

Please feel free to PM me if you'd prefer not to post publically. Any replies ...
Read more : How much for CCSVI treatment - Dr. Dake or Dr. Simka? | Views : 2086 | Replies : 5

Akaheather's Turn

My appt is scheduled on October 8 and 9. I am totally scared to death!
I don't really like flying and am really sad about having to leave the children with Grandma. :cry:

However, I want to find out if I have a problem that can be fixed!

So for those of you that are praying...I am hoping for a safe flight, something worth ...
Read more : Akaheather's Turn | Views : 7158 | Replies : 45


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