About
This is my personal blog about treatment for Multiple Scerlosis. I am documenting the outcome of treatment for jugular stenosis with stents, which I received 10/29/2009 at Stanford Medical Center, by Dr. Michael Dake.
Dr. Dake began this treatment in May of 2009, following the publication by Dr. Paolo Zamboni of his findings linking venous stenosis as the cause of MS. Zamboni gave the condition the name Chronic Cerebro-Spinal Venous Insufficiency (CCSVI). The malformation can take many forms, from a kink in the jugular vein, to a completely missing vein. The end result is blocked blood flow trying to leave the brain, resulting in reflux of deoxygenated blood back into the brain. The theory holds that this is the cause of MS brain damage and lesions.
Currently there is debate between neurology and vascular medicine about the validity of the CCSVI theory. It still needs to be further investigated by clinical intervention trials. After the National MS Society was swamped by patient inquiries over the winter, they agreed to set up an international review panel, and fund intervention trials. So far I hear that Stony Brook, Georgetown University, Duke, Stanford and Univ. South Carolina are readying trial proposals in the USA. In Canada, it is Univ. Bristih Columbia, and McMaster/Hamilton. If you are interested in the trials, contact them now as there is high interest and they will fill up quickly.
I decided to run my own personal trial, by having my stenosis corrected. Now I am observing and reporting my results, trying to remain objective and transparent, in the hope of helping others who are deciding on joining a trial, or pursuing diagnostic scans.
As of January 2010, CCSVI has been classified as a congenital “truncular venous malformations”. Vascular experts from 47 countries studied the evidence and unanimously voted in favor of officially including the stenosing lesions found in CCSVI in their new Consensus & Guidelines. Congenital, or birth defect, means it precedes the onset of multiple sclerosis. Source: Consensus Conference on Venous Malformations, headed by Prof. Byung B Lee, Georgetown University (link).
Hi Sammyjo,Joan referred me to you.Im going to India MID MAY for the procedure and I wanted to get off some drugs.I quit Rebif april 1 because honestly this drug was making everything worse,I started LDN the same day and for 4 days I had severe headaches,quit it because I found out that those 2 dont go well together.So,I was wondering how long do you have to be off REbif before I can start LDN,and can I be on the birth controll pill also with it.Thanks
Catharina
I was liberated on last wk of Feb, my right IJV was stented (60 * 10mm) just below the ear, for last two weeks I’m having weakness, stiffness in right hand from shoulder to palm.. Not sure what is causing this ?? is this be MS or due to stent, Anyone have any idea, pls advise.. (One of my MS friend mentioned that it co…uld be… due to acc nerve getting affected by size and location of stent).
Hi SammyJo, I just discovered your blog when I was searching in Google for “no flow in left jugular”. So glad you got treatment with Dr. Dake before he was shut down. I only discovered all this CCSVI stuff in June 2010, as I was recovering from back surgery. I have had MS for 33 years. In Aug. 2010 I flew to Hubbard, had the fMRI/MRV tests & then 3 angios done a couple weeks ago. I was told my left jugular is like a rat’s nest with No Flow & my azygous has a blockage from stenosis. Continued Good Luck to you, see you on Facebook.
I was diagnosed with MS back in 1983.Recently I came across ccsviclinic.ca. They are screening in Fargo, ND. Called (404)461-9560 and spoke to Nurse Lisa. Their Liberation Package includes pre-op video consultation with their doctors, flight costs, visas, accommodation within their hospital premises. The treatment includes stent, medications, reports & post-op followup for next 6 mths. Email:apply@ccsviclinic.ca. Getting liberated mid-November. Thankful to CCSVI Clinic for making this happen!