Search found 18 matches

by Wichita
Fri Mar 04, 2011 5:43 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: freezing cold feet
Replies: 21
Views: 6395

My wife's symptoms are the "polar" opposite. Before treatment she always had red, swollen, hot feet and hands. She always kept the thermostat set low to keep from overheating. Immediately after treatment, those problems went away. We now agree on a normal thermostat setting. Her hands and feet feel ...
by Wichita
Thu Feb 24, 2011 6:00 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Please verify your CCSVI testing facility
Replies: 72
Views: 12412

BNAC offers training in the subject of CCSVI, including how to perform the doppler scan and interpret results: http://www.bnac.net/?page_id=608 Their website says they are one of 2 facilities in the world offering the training in the Zamboni protocol. We should check to see if our local ultrasound t...
by Wichita
Mon Feb 07, 2011 7:00 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1638012

Dr. S, what would you advise for a person with MS who is taking Tysabri and contracts the brain infection PML? I have read that the best defense against PML is a strengthened immune system - something that ordinarily is not a good thing for MS. Since PML is life threatening, what do you think about ...
by Wichita
Sat Jan 08, 2011 6:59 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI Alliance to host educational symposium
Replies: 19
Views: 4824

Dr. Sclafani wrote about the ISET conference:
Miami
paolo, mike, ziv and i will be there!
We would love to go and hear the discussion. Can patients attend who are not doctors, nurses, engineers, etc?

The registration fees look pretty steep:

http://www.iset.org/index.cfm?do=cnt.page&pg=1014
by Wichita
Fri Sep 17, 2010 7:24 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 286459

CCSVI TRACKING MS HISTORY Name: Jasmine Male/Female: (M/F) F Age: 53 Date(s) & type of neurological diagnosis: 03/01/1979 Optic Neuritis 10/01/1981 RRMS Lesion locations: Numerous lesions in periventricular white matter, corpus callosum, and in the brachium pontis. No lesions in the brainstem or pro...
by Wichita
Fri May 14, 2010 5:55 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1638012

Dr Sclafani wrote: please look to see if there are published results of the test for normal controls already created. That would obviate the need to have normal controls One of the components of the MSQLI is the SF-36 (Short Form). Norms for SF-36 scores are available for different population groups...
by Wichita
Thu May 13, 2010 4:31 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Survey Wish lists for treatment outcomes of CCSVI
Replies: 23
Views: 3806

Here are some inputs from my wife, the MSer in my family: Bladder retention - this is measurable using ultrasound and measurement of volume when using a self-catheter Walking / mobility - I think they used time tests to cover a certain distance in a recent drug trial Numbing / tingling - seems highl...
by Wichita
Mon Apr 26, 2010 5:51 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has anyone had any experience with insurance coverage??
Replies: 10
Views: 2080

I have done a little investigation of the insurance issue. Here are a couple of tidbits that might be helpful. Holly from Dr. Sclafani's office sent me the procedure codes they are likely to use for insurance purposes: 35476 Transluminal balloon angioplasty, percutaneous, venous 36012: Selective cat...
by Wichita
Wed Apr 14, 2010 5:12 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Live Zamboni / Zivadinov CCSVI web forum - April 14th 2010
Replies: 39
Views: 8646

I learned a few things from this webcast: - Angioplasty of the azygous vein is very effective, according to Dr. Zamboni it rarely or never has restenosis - Dr. Zamboni's answer to restenosis of the jugular is to say that the angioplasty can be safely repeated. It immediately made me wonder who could...
by Wichita
Tue Apr 06, 2010 5:33 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1638012

I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project. I really like this idea....
by Wichita
Tue Mar 23, 2010 9:23 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: The AP article!
Replies: 19
Views: 4776

Congrats lucky125, and to the author of the article, I am so happy to see an unbiased and factually accurate story in US newspapers! In spite of all the grass roots efforts to get the word out about CCSVI, I think it has been one of the best kept secrets (within the US) in history. Up until now, whe...
by Wichita
Thu Mar 11, 2010 10:23 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: The vascular group
Replies: 1
Views: 1484

Selmahope,

See this thread:
http://www.thisisms.com/ftopict-9998.html
by Wichita
Fri Mar 05, 2010 2:02 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Buffalo CCSVI testing "On Hold"
Replies: 17
Views: 6515

Buffalo CCSVI testing "On Hold"

If you call BNAC at 716-859-7521, you will hear a recording: "Effective March 4th, 2010, the CCSVI Venous Testing Program has been put on hold. Further information will follow." That would explain why we did not get a call from them as expected this week, based on the recent email. The message also ...
by Wichita
Tue Mar 02, 2010 6:44 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: The dangers of false hope ?
Replies: 40
Views: 7394

Very well said, ms2009! Amen to that.
by Wichita
Fri Feb 26, 2010 10:29 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Latest Annals of Neurology article on Dake & Stanford
Replies: 33
Views: 9879

Does anyone have a link to the article that Ashton Embry is refuting, entitled "Cerebrospinal Venous Insufficiency and Multiple Sclerosis (Khan et al, 2010, Annals of Neurology)"?