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

Sept 2nd and 3rd

Wow, it's almost that time. I've really appreciated reading about all of your experiences. Of course, like MS, no two cases are the same but just knowing that there are others on the same journey gives me comfort.

I go in for testing on Wednesday and based on the results I may (probably will) have the procedure done on Thursday. I have SPMS and my symptoms have more to do with mobility than cognition so ...
Read more : Sept 2nd and 3rd | Views : 2684 | Replies : 19

A note from Holly's sister

I received an email from Trudy, Holly's sister. She asked if I would post this note on the forum.
Dear friends of Holly,
I am Holly's oldest sister, Trudy, in California. Holly stayed with me when she went to Stanford hospital. I want you all to know that she had a great time during the last week of her life, spending it here with her best friend, Kathy. We got "out and about" during the ...
Read more : A note from Holly's sister | Views : 2058 | Replies : 11

MRI reports?????????

Has anyone who received this procedure had any follow up MRI's since their operation????? It sounds like Zamboni has been studying CCSVI for quite awhile and I am sure there has to be SOME info. on whether any of the people have had changes on their MRI.
Read more : MRI reports????????? | Views : 1557 | Replies : 12


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 : 1408 | 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 : 1081 | 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 : 1228 | 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 : 1697 | 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 : 1173 | 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 : 1253 | 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 : 1502 | Replies : 8


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