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

Passed the paper along

My husband's GP requested that he see a neuro, as he hasn't seen one since last year this time. That was his old neuro, and I'm afraid we had come to the end of our relationship. Today we saw the new one and she seemed quite nice, although she admitted she wasn't an MS specialist. Well, who really is? Perhaps it is better she isn't, or at least doesn't think she is. So we gave ...
Read more : Passed the paper along | Views : 956 | Replies : 2

Zap Goes to Stanford (Dec)

Well, it's finally on ... from the time I was first diagnosed in 2006, I have thought the answer lies this way (Schelling's "Venous Pressure Theory" explaining Dawson's Fingers lesion pattern made so much sense), and now it's time to put my neck out, literally.

After playing phone tag with Dake's office since June, I'm finally scheduled to go get scanned on December 7th.

I could have signed up for as soon as early Oct, ...
Read more : Zap Goes to Stanford (Dec) | Views : 1200 | Replies : 12

Catfreak's Trip to Stanford!!

Leaving for the Airport!

Will update soon.

Read more : Catfreak's Trip to Stanford!! | Views : 8633 | Replies : 78

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 : 2727 | 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 : 2086 | 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 : 1591 | 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 : 1439 | 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 : 1110 | 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 : 1252 | Replies : 7


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