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.
David, on one phone, and I on another started cold calling interventional radiologists. Many of them had not heard of CCSVI.
At one point I watched David's facial expression change. He looked almost
optimistic. The secretary at the other end of the phone told David she
would have to call back in a few minutes. David and I sat by the phone
planning our strategy. As the minutes turned into an hour David seemed
concerned. I needed to keep postive. I told David that the doctors are
probably meeting because they have heard of this and are getting
excited. Sure enough, David received a phone call from the IR himself
an hour later. As David paced the floor, excitedly, I knew we were
going to get our son treated. The doctor said he had heard of CCSVI,
knows Dr Dake and he would read Dr Zamboni's research. Within the next
day David sent Devin's images to the doc and a few days later an
appointment was scheduled for Devin to undergo and angioplasty on May
6th! Almost exactly a year since his first episode!
LIBERATION DAY: David and I took Devin to the hospital. Devin was taken to the
OR and David had to go back to the fMRI facility as Msers were being
tested for neck and chest venous obstructions. The procedure took 45
min. I was with Devin when he was brought to recovery. I was anxious to
know if he felt any different. He had color in his cheeks which I
hadn't seen in a while. He said he had less "brain fog". The doctor
seemed quite pleased. He said Devin had severe jugular and azogos
stenosis which were treated. He had to stay on bedrest for 5 hours as
Dev has not had that much blood flowing in/out of his brain for a very
long time. The doctor told David, later that he saw everything Dr
Zamboni said he would see. The doc was "on board" to be part of a study
on angioplasty for MSers with CCSVI.
Over the next days/ weeks all of Devin's symptoms resolved. He regained his balance, he was
able to read without the words looking grey and hazy, the numbness was
gone. The most noticeable change was his behavior. Months before
Devin's diagnosis his behavior was combative and inappropriate. He had
fits of anger that would come on unexpectedly(for which we sought out
psychological counseling). He regained his charming, even tempered
personality. This was the most amazing change.
Now we were real believers. David wrote a study proposal to submit to our local
hospital's IRB. We wanted to make sure we would not be one of those
centers to be closed down. David, a brilliant and forward thinking
scientist, developed a test using his fMRI maching to look at the
hemodynamic response before and after angioplasty. As Devin was the
test case compared to a "normal" volunteer we needed to make sure there
was a difference. Devin's pre angioplasty response was abnormal and the
after angio. test was normal.
June 10th David presented his research protocol to the IRB at the local hospital and he received immediate approval.
The study continues and we are moving forward .
December 23,2010. We have now helped more than 130 pwMS get tested and treated
for CCSVI. Our entire family is involved in the day to day operations.
Devin is the president of the Applied fMRI Institute and schedules and
manages the operation; Alexandra is the president of the Hubbard
Foundation and is often the first contact people have with us. She
manages our web site and e mails and speaks with MSers and their
families daily. Alexandra is implementing new ideas to help the Hubbard
Foundation become a center of excellence. We will be sponsoring our
first conference in May in San Diego. David... what can I say about my
hero! He is moving CCSVI testing and treatment by leaps and bounds and
received national IRB approval for a Multicenter Registry to study CCSVI
and is the treasurer of the newly formed ISNVD. As for me I e mail,
face book, and talk with many MSers and their families to give support,
answer questions and listen to their concerns. Families often feel
lost and alone when caring for a loved one with MS. I go to the office a
few times a week and chat with as many people as I can. We are all in
this together and I now have a very large extended family. David and I
discuss CCSVI from the moment we awake in the morning till the time we
go to bed. Our life has taken on new meaning!
I want to thank Dr Zamboni, Dr Haacke, Dr Dake, Joan Beal, Ken Torbert, Ashton Embry, Dr
Terry Wahls, Drs Ponec, Gooding and Saxon and especially all the MS
pioneers for filling our lives with optimism, amazingly detailed
information and the challenge to move forward.
Wishing you all a happy and healthy New Year
Arlene and the rest of the Hubbard Team
http://www.facebook.com/notes/arlene-pellar-hubbard/year-end-thanks-to-the-ccsvi-community/151751478206822