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

Update from NIH: I do have stenosis, I don't have MS...

Sorry it's taken so long for me to follow-up on my visits to the National Institutes of Health and their reaction to my CT venogram that showed stenosis in my left internal jugular.

Just to review, for the newbies: I've had a diagnosis of atypical PPMS for the last 6 1/2 years. For most of that time, I've disputed this diagnosis.

My MRIs have always shown only two nonenhancing lesions, and only one that is ...
Read more : Update from NIH: I do have stenosis, I don't have MS... | Views : 6014 | Replies : 37

Finally approved by insurance!!!!!

Well, I talked to Alex today and she told me my BCBS insurance finally approved everything. :D There was a big mix-up and apparently she thought I needed pre-approval for the MRI/MRV but it turns out I never did. Sitting around waiting was stressful since I sent off my records in early August (I had booked the appointment for Dec. because I have a month off ...
Read more : Finally approved by insurance!!!!! | Views : 1661 | Replies : 11

Canadian MS Society Homepage!!!!

Front page is an announcement about CCSVI!!

Well done Canada!!
Read more : Canadian MS Society Homepage!!!! | Views : 1965 | Replies : 13

E-mail from Dr. Haacke....

OK. Overwhelming the docs that want to help us is not going to work. Dr. Haacke understands this, but his e-mail accounts are full, his phone won't stop ringing and people have found out his private information to contact him. This is not good. Believe me, he understands the desperation, but we've got to do better.

Dr. Haacke wants to help establish a testing protocol for MS patients. He will not be able to treat ...
Read more : E-mail from Dr. Haacke.... | Views : 4696 | Replies : 13

RV parking close to Stanford?

Hi all,
I’m one of the many who have their paper work in and are waiting for the call from Dr. Dake and then the next call from Darcey or Alex to schedule.
I’ve been following all the posts from our pioneer brother’s & sisters on pre- & post surgery suggestions, and I thank them from the bottom of my heart. The info on negotiating the Stanford hospital and local lodging is extremely helpful.
Now ...
Read more : RV parking close to Stanford? | Views : 1948 | Replies : 2

There is a sticky on CCSVI on MS World!!!

I was thrilled to see a sticky with information on CCSVI at the top of the general message board of MS World. Wow, the avalanche of CCSVI info is spreading fast!
Read more : There is a sticky on CCSVI on MS World!!! | Views : 1473 | Replies : 0

Media interest

It's all happening, perhaps.
Yesterday I emailed the fabulous w5 news report to lots of British news organisations and reporters. Today I was contacted by the BBC who had loads of questions for me about CCSVI and my imminent treatment.. It's about time CCSVI caused an avalanche of interest this side of the pond.
Fingers crossed.
Read more : Media interest | Views : 2934 | Replies : 18

OH Canada..making the Liberation Treatment an option

A few questions I'm seeking answers to.....

1. I want the testing done to see if I have stenosis...what test do I ask for?

2. Can a patient request the testing from their GP or do they require a specialist?

3. If a blocked vein is present, shouldn't it be fixed regardless of ms?

4. If testing reveals CCSVI, what is the next seek out a specialist?

5. Do we wait for trained people ...
Read more : OH Canada..making the Liberation Treatment an option | Views : 5756 | Replies : 13

Anything happening in the Northeast US?

Hi, I'm a newbie here, the husband of a woman with a mild case of ms. We live in New Hampshire USA. Anyhow, this whole CCSVI issue has got us very excited, but I can't believe there is no action yet in the northeast even as far as testing. Does anyone have any leads on when things may start to happen up here? We are very tempted to just take the plunge and set up ...
Read more : Anything happening in the Northeast US? | Views : 1603 | Replies : 5

Zamboni new publication?


Sorry to put up a new post, but I can't find the info needed in all the other posts:

In which magazine will P. Zamboni publish his results of the tracking of the liberation procedure tomorrow?

I seem to remember there was a link or a title mentioned.

Need this to inform a journalist who might be interested.

Read more : Zamboni new publication? | Views : 6086 | Replies : 27


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