Dear friends,

It's been more than a year ago, December 4,2009 to be exact when the Hubbard family received the devastating news that our dear Devin had Multiple Sclerosis. Many of you know the story of what happened next but I would like to summarize yet once again.

Dec 4th 2009 Dev began experiencing numbness from his feet to his torso. I thought this was probably what I had initially feared in May...MS. He already had a brain MRI in Nov and he had a scheduled appt with his neurologist . He was referred for a spinal MRI. Follow up appointment he was diagnosed with MS and given literature on disease modifying drug, Rebif.

As a mom and an occupational therapist, there was no way I would just accept the standard care without investigating what else was out there. I quickly made the internet,google, my friend. I read all I could about bee sting therapy, stem cell replacement, hyperbaric chambers and a new theory called CCSVI(chronic cerebrospinal venous insufficiency). Dr Zamboni, a vascular surgeon had studied the use of angioplasty(venoplasty) on MS patients. I read his research paper and attempted to get David to read it,as well. David, in distress over Devin's diagnosis and fear of what the future yielded for our dearest son wanted nothing to do with some "hokey" theory. I waited to speak with Devin's neurologist at our next appointment.

12/16/09 Took Dev to his neurologist....asked her about Tysabri, Asked about CCSVI and if she could order the specific ultrasound. She said the ccsvi theory was interesting but Devin did not have that kind of MS. She also said no one in town is doing the test and even if there was no one is doing the procedure! All I could think of at that moment was "keep your cool,Arlene". This is going to be an uphill battle worth fighting.

That night I printed out Dr Zamboni's research paper and while David was on his computer looking at neurology journal articles on MS I handed him the paper and said" read this, and if you think it's hokey...I'll back off". David was skeptical but said he would research this further. I quickly researched all the names I had seen associated with CCSVI and noticed a web site for Dr Haacke( a physicist at Wayne State Univ) who developed sequencing to look at the neck and chest veins in MS patients. David is the director of an fMRI facility in SD so I figured these two should, at the least, communicate. I noticed that in a few weeks Dr Haacke was having a meeting with all the scientists and doctors involved with CCSVI in Toronto. I said to David, you need to get yourself invited. That night David emailed Dr Haacke and received an immediated response. David was invited to be part of this consortium.

David flew to Canada not knowing what to expect. We were cautiously hopeful as the science seemed credible.

Anxiously, awaiting a call from the meeting, I became a facebook fanatic. CCSVI in Multiple Sclerosis was a site where i could ask questions about CCSVI and tell my story. This MS community made me feel safe. I was on the right track. After the meeting David called. With tears and a crackling voice he said "Arlene, this is it". My husband never says anything that he doesn't believe. From that moment on we moved rapidly. David went to Wayne state to receive training on the Haacke protocol. He bought the necessary sequences from Seimans and he hired an MRI technician to actually do the test.

Devin was the first subject. The results showed severe internal jugular stenosis. Now our job really began. How to find an interventional radiologist or vascular surgeon to do the procedure.

David and I discussed the politics. There was a storm brewing between neurologists and doctors wanting to perform the simple angioplasty. We put Devin on a waiting list for a study that was going to start at Stanford in the near future. Dr Dake, who was the first surgeon in the US to perform this procedure on a patient with MS was going to do this study. He had treated several people months before but he was shut down, like many other centers in the US and Canada. As of July 31st the study has not begun. Neurologists are demanding double blind placebo controlled studies. We needed to be very careful about finding the right person to treat Devin.