Glenn and Grace went shopping for me today and we had a good visit when they returned with the groceries. I was so glad to have them here. Craig dropped by and prepared dinner and it was delicious! The house was fragrant. Chicken in buttermilk, asiago, onion, mushrooms, peppers and wine.
My head is clear tonight. Vision still impaired but I am able to walk again without holding the walls (mostly). I have received so MUCH encouragement from all of you and want you to know how much it has helped. I thank you from the bottom of my heart. I am going to share an email with some research on the new treatment for MS a friend has done for me, it might be useful to others who have MS. As soon as I am able, I will be following up on it. It gives me great hope. Below is the entire messag:
Sent: Sunday, June 06, 2010 10:54 PM
Subject: Liberation Treatment – Relevant Info
Heather
Here are some links to articles/websites where I found very recent information on CCVSI and the Liberation Treatment. They are all worthwhile reading: Some pertinent facts:
To get the CCVSI imaging done at Barrie Vascular Imaging you only need a requisition from your Dr.
SUNY in Buffalo has just completed a CCVSI study with excellent results and they are starting a new study (I will call to see if they are still accepting new patients and if they will include a Canadian). If they are hesitant about a Canadian, I will suggest that it would be beneficial to have a Canadian as it may help get the Canadian Government to fund a similar study in Canada. All Drs involved with CCVSI would probably
You can email grozdinski in Bulgaria for details of treatment there, available times and costs which are about $3,800 CAD
Screening is also available at Westmount Medical Imaging in Montreal.
Drs in Albany and Brooklyn, NY perform the Liberation Treatment (see the attached list)
I will contact University Hospital at LHSC neurology department to find out if they are planning any CCVSI studies in the near future.
In addition, I have attached a list of doctors around the world who perform the Liberation Treatment. (Heather, I will go anywhere in the world with you to get this treatment)
(1) Barrie Vascular Imaging – offers CCVSI screening but you must be referred by your Dr. One of their technicians trained with Dr. Zambonie in Italy. Dr. Sandy MacDonald (the Barrie surgeon studying the Liberation Treatment and conducting trials is their Director.
http://www.barrievascularimaging.com/CCSVI.htm
(2) This is from Medscape Neurology…. there is a study going on at SUNY (State University of New York) at Buffalo General Hospital:
Already, Dr. Zamboni is collaborating with Robert Zivadinov, MD, and colleagues at Buffalo General Hospital in New York on an open-label, MRI-blinded study of 16 relapsing-remitting patients with MS with confirmed strictures in the cerebrospinal venous outflow routes. Half 4 randomly selected patients in Italy and 4 in New York will undergo early intervention to address the blockages at 3 months, and 8 patients will have a delayed procedure at 6 months of follow-up.
Safety and preliminary efficacy will be monitored using MRI and clinical examination, and outcomes will be compared at 1 year. Dr. Zamboni and Dr. Zivadinov presented their protocol at the 25th Congress of the European Committee for the Treatment and Research in Multiple Sclerosis earlier this year in Düsseldorf, Germany.
In Buffalo, Dr. Zivadinov is also conducting a larger epidemiological study aimed at determining the prevalence of CCVI among their MS patients.
And this is the Medscape MS Resources Center link:
http://www.medscape.com/resource/ms
(3) Link to a University of Buffalo article on CCVSI Study
http://www.buffalo.edu/news/10937
(4) CCSVI Screening in Montreal
http://liberation-treatment.com/eastern-canada-ccsvi-screening
(5) Treatment is available in Bulgaria. You can get free cost estimates (about 3,000 Euros or $3,800 CAD could be cheaper if scans and imaging is done in Canada) as well as possible dates (Heather, I will go anywhere in the world with you to get this treatment)
Foreign citizens, who want to be diagnosed and treated for multiple sclerosis at a Bulgarian center should apply for it by e-mail and as a reply will get additional offer of tentative costs of the procedures to be diagnosed and treated, and afterwards will be provided with dates for the hospital treatment. See following article:
Hospitalization of foreign citizens at the center for diagnostics and treatment of patients with CCSVI will start in April 2010. It will include the following procedures:
Echo-doppler of the venous system.
Computer tomography ( ) phebography of the veins.
Phlebography of vena cava, vena jugularis and vena azygos.
If at the time of phlebography vein stenosis has been diagnosed, momentous balloon dilatation or stent implementation will be performed.
Parallel to these examinations the patient will undergo comprehensive blood tests, electrocadiography and consultations with a phlebologist, cardiologist and neurologist.
Duration of hospital treatment will be 3 days.
Upon release from the hospital patients will be provided with epicrisis with the confirmed diagnosis and description of the implemented treatment.
http://liberation-treatment.com/letter-prof-grozdinski
(6) June 4, 2010 Barrie Examiner article about woman going to US for Liberation Treatment ($2,000 only since she already had the scans to diagnose CCVSI) and she is fighting OHIP to get reimbursed for treatment cost because they denied covering the procedure.
http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2607441
(7) An article about a Calgary woman who went to Poland for the Liberation Treatment and it changed her life.. The readers comments are also worth reading.
(8) June 3, 2010 – article on petitioning Parliament for $10M for Liberation Study and Treatment (involves Dr.Sandy MacDonald from Barrie .)
http://liberationtreatmentccsvi.com/2010/06/canadian-federal-government-urged-to-fund-ms-trial/
How Heather Sees It 