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


Hello everyone,
I am a PPMS-sufferer from Germany and have lately been reading very much on this very informative website. What I do not quite understand until now - and maybe you can help me - is: What are the results on CCSVI in PPMS so far? Has anybody with PPMS got stents put in? And how did it work? Or are results about this subject expected not before September 8th?
Thank you so much ...
Read more : CCSVI in PPMS | Views : 1463 | Replies : 2

stents, drugs, and MRI

It just occured to me that stents are metal -- does this mean that once you get stents in your jugulars, particularly if they are very high up, you cannot have a brain MRI ever again?

Are the stents that Dr. Dake uses drug releasing stents?

How long is Dr. Dake putting people on blood thinners for after the surgery? You aren't on them for life, right? But you do take aspirin forever?

Thanks all ...
Read more : stents, drugs, and MRI | Views : 1139 | Replies : 3

How do you say that?

Getting ready for the trip, and studying up. Making sure I have my pronounciations down before speaking to the docs (I made one giggle once saying "petechiae"), and I found this site- helpful for any of us daunted by medicalese-

azygos, oligoclonal, oh yeah, baby, I gotcha covered.
Now I gotta brush up on mio Italiano...
Read more : How do you say that? | Views : 1270 | Replies : 7

Vascular Specialist - What tests?

What tests should I request? The 'chosen' tests seem to change.

My PCP supports the idea. He is concerned about my swollen/discolored ankles/legs.
Read more : Vascular Specialist - What tests? | Views : 1773 | Replies : 6

Anybody use the Caltrain from San Jose Airport to Palo Alto?


Did anyone use the Caltrain from SJC to Palo Alto? If you did please share what you liked or disliked about the service.

It appears to be convenient from airport to Palo Alto and the Sheraton is so close to the train station.


Read more : Anybody use the Caltrain from San Jose Airport to Palo Alto? | Views : 1230 | Replies : 3

Questions and Comments

My date for Stanford is September 15 (tests) and 16(proceduree if indicated by test results). My husband wanted me to ask if we needed to pay any upfront or does Stanford bill your insurance and the patient is left with the 20% to cover after receiving an EOB from insurance company. I did get notification that my insurance had approved MRI and MRv of head, chest, andd neck which was a blessing. I saw my ...
Read more : Questions and Comments | Views : 1318 | Replies : 6

Hotels in Palo Alto

I'm trying to make plans now for my trip to see Dr. Dake in Dec. Am I right about a Stanford hospital discount for some hotels or did I misread that in a post? The Sheraton is coming up $349 a night for the days I will be there!!! That's a bit steep to say the least.
Read more : Hotels in Palo Alto | Views : 1556 | Replies : 8

Posted "Update on CCSVI" on my blog...

My original blog post about CCSVI has gotten hundreds of hits, so I thought it appropriate to post an update.

Feel free to critique at will... ... sease.html
Read more : Posted "Update on CCSVI" on my blog... | Views : 1824 | Replies : 13

My Friend, Mary

Mary had her surgery yesterday..blockage high up in the left jugular vein (I think I said right jugular in another thread -oops!). She is resting comfortably at the Sheraton tonight. Mary had some nausea to deal with, but seems to be over that now. The forum has talked about how Dr. D is learning, and changing his protocal. Well, Mary is his first patient being sent home without Coumadin! How lucky is she? So maybe ...
Read more : My Friend, Mary | Views : 1799 | Replies : 11

Heard Back from the NIH

Just a quick recap: I've been going down to Bethesda, Maryland to be seen by the doctors and researchers at the NIH, to take part in a "Natural History of MS" study that they're doing. My case is so atypical that they've taken a special interest in it, and have done some additional testing (MRI SPECT, diffusion tensor scans, etc.).

Last Thursday I made my third trip down to the facility, and I had sensory ...
Read more : Heard Back from the NIH | Views : 4188 | Replies : 37


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