by Jules Plamondon

March 5, 2011

I have been suffering from Multiple Sclerosis (MS) - (Progressive-Relapsing) for the past 16 years and decided to go for the Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) procedure following Dr. Zamboni’s discovery.

I have not heard much feedback from MS patients who had this treatment with the exception of YouTube testimonials showing drastic improvements. I wanted to share my own experience and give a more balanced and down to earth feedback.

My spouse, Paulette, and I headed to Newport Beach, California from January 23 – 30th, 2011, for the CCSVI procedure at the Pacific Interventional clinic.

My first appointment was for a Magnetic Resonance Venogram (MRV), which showed vein blockage. The following day the CCSVI surgery was performed and involved the use of a venogram. The patient remains awake throughout the procedure, but is sedated. The whole intervention lasts less than one and 1/2 hours. In my case, the left jugular vein was blocked at 70%, the right jugular vein was blocked at 50% and the azygos vein (chest) was blocked at 30%. I went there with a very down-to-earth attitude and was not expecting a miracle cure! The doctors did a fantastic job at unblocking my veins. The rest is now up to God and my brain…

I have since noticed several minor improvements and hope that things will keep improving. For example, I immediately regained heat in my left forearm. I am now able to bend my legs when I am sleeping on my back. My lower legs are now warmer. I can even stand to shave and brush my teeth! I no longer have violent leg spasms when trying to sleep. In addition, I no longer experience feet spasms as I begin to shower. Previously, the initial contact of water on my feet had been enough to trigger spasms.

I also feel stronger when I stand to walk with my walker and only use my wheelchair when I am too tired. I am doing some physiotherapy exercises to strengthen my weakened and atrophied legs muscles. For normal people, these are minor changes, but for me they are huge improvements. I am very pleased with the results and encourage MS patients to seek CCSVI treatment.

I see the CCSVI procedure as another tool to alleviate MS symptoms. It works for some people, but not for others. MS patients should not expect to come out of the procedure miraculously healed, but there is often improvement and cause for hope.

Due to the number of physicians performing the CCSVI procedure and the number of locations where they can treat patients, there is no wait for the procedure in Newport Beach, California. All patients can have an appointment as early as 7-10 days from contacting their office. Most patients can get this confirmed appointment for their consultation and their procedure within 24-48 hours by following the steps on their scheduling page (http://www.pacificinterventional.com/ccsvi_scheduling.html).

CCSVI Patient Information: http://www.pacificinterventional.com/ccsvi_patient_info.html
CCSVI Patient Application Form: http://www.pacificinterventional.com/ccsvi_intake_form.php
Frequently Asked Questions: http://www.pacificinterventional.com/ccsvi_faq.html

The MRI/MRV costs US $2,500 while the actual surgery costs US $8,000. In addition you have to purchase medication to prevent blood clots at US $130. The optional medical travelling service (FLY GTE) costs US $750.

There is now a cheaper alternative to this medical travel company. Former FLY GTE employees have started their own business at a much lower cost. They are Mario Salvador (Mario_Salvador@verizon.net, 323-350-4340) and Lorena Espinosa (Lorena_Espinosa@verizon.net, 323-712-8557). This couple personally took care of us and were extremely compassionate and caring. In addition, they were always on time. They drive a vehicle that can accommodate a wheelchair. They can pick you up at the Los Angeles International Airport (LAX) and drive you to all your scheduled appointments. They can even schedule your accommodation and book a flight from Los Angles to the John Wayne Airport, which is located in Newport Beach if you prefer. It is important that you let them know your mobility restrictions and particular requirements.
For your information, Los Angeles is located approximately 55 minutes from Newport Beach (42 miles, 68 km). Of course the traffic conditions will have an effect on the time it takes to reach your destination.

The weather in Newport Beach was fantastic. It averaged 22.5? C (72.5? F) during our stay.

During our own free time I could not use the shuttle service from our hotel as I could not climb in the van. Instead we used the city bus service, which allows wheelchair access. My fare, as a wheelchair user, was 60 cents to travel around. Paulette’s fare was $1.50! We had the opportunity to visit nearby Balboa and enjoyed the view of the Pacific Ocean.

We returned to Edmonton to -31?C (-23.8? F) temperature. The wind chill factor was not even added! The following day we hit a record low of -40? C (-40? F). It was a shock coming back after our warm mini-holiday, but it was good to be back home.

Alberta will provide up to $1 million for an observational study that will examine the safety and effects of the CCSVI treatment for people with multiple sclerosis.

The province says the goal of the observational study is to determine the safety and patient-reported impact of CCSVI treatment procedures.

The study hopes to examine at least 500 Albertans with MS. Those who participate will be asked to fill out a questionnaire on their symptoms, medical history and possible complication if they’ve already had the surgery.

The study will essentially be a web-based questionnaire for Albertans who have received treatment for CCSVI in another country, those who are scheduled to receive it and other Albertans with MS. It will be conducted by researchers from the University of Alberta, the University of Calgary, and other experts.

The three-year observational study will begin in spring 2011.

Currently, the venous procedures are not approved for use in Canada.