Live Web Conference - What do we know about CCSVI with a star-studded cast

Today was an important step forward in the education of the masses in regards to CCSVI.  At 12pm EST there was a live web-cast sponsored by the National Multiple Sclerosis Society and American Academy of Neurology, with a panel that included: 

Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy

Dr.  Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY

Dr Andrew Common, Radiologist in Chief, St Michaels Hospital, University of Toronto, Ontario, CA

Dr Aaron Miller, Professor of Neurology  & Directory of the MS Center at Mount Sinai, NY

There was a live audience of members from various news and print media organizations, and it was broadcast internationally over the web.  The session was moderated (quite well I thought) by Jay McBride.

Its a little under 2 hours long, you can watch the recorded webcast HERE.

Overall I was quite pleased with the webcast.  There were some very interesting facts put forth, and at times the tension was quite visible.  Once I’m able to go back and watch it again I’ll try and dissect some of the specific comments made, but for the time being here are the highlights:

• Dr Aaron Miller was not dismissive of CCSVI, he absolutely said it’s an avenue or ‘lead’ that should be followed.  He talked about current MS therapies and how they have shown for years to help MS patients and that he did not think MS patients should be abandoning their current therapies for CCSVI diagnosis and treatment.  Dr Miller mentioned a couple of times that the MS society was going to be funding new studies into CCSVI (to be announced in June), and that work in these studies should be starting in July.

• Dr Zamboni talked about his studies to date, and some of the studies they are currently working on and hope to get started with soon.  He talked about CCSVI, what it is and how they are diagnosing it.  One of his slides displayed percentages of MS patients vs healthy controls that have tested positive for CCSVI in various geographical regions, which was overwhelmingly supportive of a MS-CCSVI correlation globally.  He took a very aggressive question on the relation of iron deposition to MS and other diseases like Parkinson’s and Alzheimer’s, and from my non-medical background seemed to knock it out of the park – actually looking a little aggressive himself which was nice to see.  He expressed concern at patients getting treated without the right doctors and proper procedures being followed, yet made a heart-felt plea at the end for Neurologists to use compassion in working with IRs to help patients who have no other treatment options.  Multiple times he talked about angioplasty being safe, and repeatable, that the Azygos vein responds extremely well to ballooning and that the position of the jugulars could very well present other treatments options (more traditional surgery perhaps) if restenosis keeps happening.  Overall I think it was his best presentation to date and will easily be the most viewed in a relatively short time as many reporters as there were there.

• Dr Common talked more about Interventional Radiology itself and the venous system.  It was a good balance and very informative as many MS patients and families will have more limited understanding of this anatomy.  He has not treated any patients for CCSVI, but is getting many calls by MS patients to offer the Liberation Procedure.  He shared some of the potential complications of angioplasty and stenting (actually made an interesting comment, saying the one patient who had a stent migrate to his heart didn’t need to, but had open heart surgery….the didn’t need to part was a first I’ve heard on this individual case).  I don’t think Dr Common was asked to provide much more info than he did, but it was a nice job talking about the venous system in an easy to understand way.

• Dr Zivadinov’s presentation was perhaps the most interesting and I won’t comment much on it here as I’ll dedicate an entire post to dissecting some of the numbers and information he presented regarding the BNAC studies.  I will say Dr Zivadinov was very adamant about patients not flying all over to get treated just anywhere, that at the least it should be under IRB watch and done in coordination with a Neurologist.  Keep in mind that Dr Zivadinov is a researcher, and he understands what needs to happen for the CCSVI-MS link to become accepted medical knowledge and it’s controlling this early treatment of patients to make them factual as opposed to anecdotal evidence and I applaud his advice.  Again, another post on his presentation to come later.

There were over 7000 questions posted by online viewers….wow.  I think this will be the media breakthrough the MS community has been looking for in CCSVI awareness.

Anniversaries, Tikka Masala and CCSVI

Well I’m chomping at the bit to get our CCSVI escapades here on virtual paper for everyone, but have to take a short detour as today is our 7 year wedding anniversary.  That’s right, 7 years and Courtney hasn’t kicked me out yet so I must be doing something right.  It certainly isn’t my prowess in lawn care or Anthony Bourdain-like taste buds keeping me in her good graces (I hate yard work and have the palate of a 3^rd grader).   I put together a little slideshow (right) with a handful of pictures of the two of us over the last seven years….I’ve gotten balder, she’s just as gorgeous as the day we were married.  Not fair, but I’m definitely not complaining! 

So to celebrate the occasion I took my first stab at homemade Indian food.  A nice Grilled Chicken Tikka Masala with a curry and cinnamon basmati rice.  I must say, the third grader in me even liked this tasty dish, and boy did it put a smile on Courtney’s face.  I think I counted 7 ‘thumbs up’ over the course of dinner as she was unable to give her mouth a long enough break for verbal applause.  Success!

Another anniversary in the books.  It was a good day, no falling, only a couple of dizzy spells, lots of laughter, great company, awesome food and a genuine appreciation for each other.  I couldn’t ask for more as Courtney naps and I relax in our new/recycled/extra comfy recliners donated by a good friend.

OK.  Lets talk about CCSVI.

I’m not going to go into the nitty-gritty details of what CCSVI is and the science behind it in this post (there are links to research and CCSVI specific websites on the right if you want to get granular).   Instead just want to share our experience so far and where we currently stand on the topic.  For those unfamiliar, CCSVI, or Chronic Cerebrospinal Venous Insufficiency is a relatively new disorder in which the veins that drain the blood from the central nervous system to the heart are compromised (narrowed, blocked, malfunctioning), causing a reflux of blood back into the CNS.  This reflux over time leaves deposits of iron….Iron is toxic at high levels and is known to cause cell death, inflammation, and is just in general a very bad thing to have building up anywhere in the body, much less the brain and spine.  There are studies currently underway on a global scale to understand the true relationship of CCSVI and MS, how to best test for CCSVI, and a whole host of other related threads.  Make no mistake CCSVI is real, it’s a recognized/defined condition by the International Union of Phlebotomy.

Regardless of whether there is a causal relationship, it’s already a well documented fact that individuals with Clinically Diagnosed Multiple Sclerosis are showing an extremely high incidence of CCSVI.  Like many other MS sufferers and their caregivers, we wanted to get Courtney tested and if there was a stenosis or malformation in these veins draining the blood from her CNS we wanted to get them fixed.  If she broke her leg we’d want to get that fixed too, regardless of MS.  MS aside, if her veins were ‘broken’ they need to be taken care of if possible. 

So, last November I started the process and contacted Courtney’s Neurologist.  Dropped off physical copies of everything I could get my hands on including the Zamboni studies, imaging protocols to test for CCSVI, some of the anecdotal reports from already treated patients.  The Dr didn’t call me to talk, instead giving the infusion nurse (did I mention there is an attached infusion clinic at this private practice) a message to deliver me, saying he had looked over the material and if there was anything else I wanted to drop off to feel free.

Undeterred I started reaching out to Interventional Radiologists, Vascular Surgeons, Neuro-radiologists in hopes of getting an appointment…..to no avail.

Finally we decided to talk with Courtney’s GP, who ended up being very supportive.  She has been Courtney’s Dr since before the MS and is one of the few Medical Professionals who seems to understand our sense of urgency.  She without pause wrote us a prescription for an MRV, and left it to us to find the right imaging center (knowing we required certain equipment).  With a script in hand and the help of another MS patient who is also trying to get treated for CCSVI, we were able to get an appointment with the head of Interventional Radiology at a local University Hospital.  Courtney had her MRV on Feb 23^rd, with her follow-up appointment on March 23^rd to get her scan results…..talk about a long 4 weeks.

The day came with much anticipation.  It’s hard not to let the hope build up when you care for someone with a currently incurable disease, and this whole experience is teaching me the importance of managing that hope with tempered skepticism.  Its kinda like buying a lottery ticket….you know you have in your hand a chance at something that could change your life in a hugely positive way.  Ticket in hand you dream of what you’d do with an obscene amount of money….buy an ‘insert shiny new toy here’, set your friends up for life, imagine what it would be like to NOT have to worry about money…the thing that lottery ticket would fix.  That’s exactly what the ‘CCSVI’ ticket did to us….we were imagining what it would be like to NOT have to worry about MS…the thing that the CCSVI ticket could fix.

The Dr was really very nice, seemed to have a genuine interest in CCSVI, yet was reserved.  He proceeded to tell us that Courtney’s MRV showed stenosis in two different locations, in both internal jugulars; however, he had seen similar in another patient (the only other MS patient he’d seen) and when he went in for venography two months after the MRV the stenosis was gone.  This led to an immediate impromptu ultrasound.  The ultrasound was informal with no particular protocol followed, he just wanted to see if the narrowing was still present.  Courtney’s jugular’s measured 0.97 and 1.12 mm in diameter while laying supine and breathing normally.  I’ve been told by 2 other doctors that the normal diameter of the IJV in the supine position is 8-12mm, so Courtney’s veins were absolutely nowhere near normal.  The Dr had her do what’s called the “valsalva” maneuver, where one holds their breath and exerts pressure (strain).  Doing this caused Courtney’s veins to dilate back to the normal range, but when she stopped exerting pressure they went right back to 1mm.  This Dr’s position is that without a ‘fixed’ stenosis he didn’t see any problems with the veins.  He didn’t check for reflux or any of the other indicators of CCSVI, and basically just turned us back over to the Neurology department.  You see, we also go to the MS Clinic at this hospital and the head of the Clinic is not on-board with CCSVI and has told me in writing that at this point in time he could not recommend venoplasty for any of his patients (although he reserved the right to change his mind).  Did the Neuro put the stop on the IR doing anything with patients from their clinic?  Considering what is going on at other locations around the US it wouldn’t surprise me, but would be speculation.

Needless to say we were both crushed and confused.  On one hand we had confirmation of narrowed veins, but then the Dr saying nothing was wrong with them because he couldn't find a fixed stenosis.  That was definitely a tough day.

So, now we have both MRV and Ultrasound images that show a problem but still need a Dr willing to go the next mile and do a venography to really explore the root of her narrowed veins and test for flow issues.  We’re on the waiting list for scheduling to see a Dr, he seems to be a brilliant man who has spent his entire career helping those who need it most.  He is taking the time to personally connect with the MS community and share his knowledge and experience.....no small thing considering how controversial this topic is right now.  The wait may be 6-12 months, we just hope for treatment before any more progression. 

In the meantime, the hope is for the MS-CCSVI link to be proven, and that all the other MS patients around the world are able to be treated in a timely, safe and effective way.

First Things First

Where to start…..at the risk of sounding like a newbie at an XY Anonymous meeting…

Hi, my name is John, and my wife has MS.  I’m compelled to share our story in many hopes….in hope that it can bring a tad more attention to the fight MS patients and their families go through every day, in hope that it can help others dealing with this dreaded disease, in hopes that it can help me think through the challenges we face and make the right decisions, in hopes that it can show other caregivers they aren’t alone in their fears and that the cross we bear is one of love not disease, and that it’s our love that pulls and pushes us forward.  There are so many things I want to talk about, but first, here’s our story.

It was love at first sight.  I was working in a kiosk at the Golden Triangle Mall in Denton, TX one afternoon 13 years ago when this incredible girl passed by.  She was wearing a camouflage t-shirt that let her shoulder tattoo barely show under the sleeve, ripped up jeans, short dark brown hair, and had the most beautiful smile I had ever seen.  She was smiling at me.  About a half hour later she stopped by my place of work and there was the ever so awkward moment of sales clerk trying to help a customer who didn’t really need help.

I kicked myself for days not getting her number.

She wouldn’t get out of my head, all I could think about was this woman I saw at the mall, and my friends were definitely tired of hearing me talk about her.  Little did I know she was at that same time telling her best friend she saw the guy she was going to marry.  Luckily Denton, TX is a fairly small college town and it didn’t take long for us to run into each other again, this time she was with someone that knew me who drug her to my kiosk and made an actual introduction.  Courtney…. I now had a name to dream about along with the face.

Still no number, and I was yet kicking myself again.

You see, although I sometimes pretend otherwise, I’m really quite shy, and it wasn’t until about a month or so later with the assistance of copious quantities of alcohol that I was brave enough to approach her at a bar I frequented (where she happened to be on a blind date..ha!) and got her number.  I believe the line was “If I let you get away again without getting your number, I’ll have to kick my own ass”……although I bet it sounded more like “Ish I vet you geet away again wishout hetting your number I’llll have to kish own ash”….I’m surprised she answered when I called.  She did, and we’ve been together ever since.

We’ve had many wonderful experiences over the last 13 years, with our 7 year wedding anniversary coming up on April 13^th as a reminder of one of the best.  Although life was kind enough to put us in each other’s paths, it isn’t always kind.  2006 saw Courtney starting to experience some balance issues, which we explained away as being tired or perhaps a bit out of shape.  She’s a photographer you see, and if you’ve never shot a wedding before you don’t realize the toll a wedding photographer's body goes through.  I assisted as a second shooter a couple of times and was crying like a baby the next day complaining how sore I was.  It seemed legit, it’s a taxing profession, and her balance wouldn’t get bad until towards the end of the weddings. 

Well, it continued to get worse, and we couldn’t explain it away anymore.  She had tingling in her right hand and a bit of numbness, her right leg was showing signs of foot drop (we didn’t know what that was back then), she had been experiencing bladder evacuation problems for a long time already, and the wall-walking was beginning.  After two sets of MRIs (3 days apart) and EVP testing she was diagnosed with Relapsing Remitting Multiple Sclerosis.  We had her tested for heavy metal poisoning and Lyme as well, both of which came back negative.  Lumbar Puncture was offered as a final confirmation of diagnosis, but she was very afraid of the procedure and we were told it wasn’t necessary to clinically diagnose her (not to mention she had a wedding to shoot the day after they wanted to do the LP).

Over the last three and a half years, Courtney has slowly progressed in disability, going from wall-walking to a cane and now to a walker (which still hasn’t stopped her from falling at times)…….this progression in spite of using MS drugs like Copaxone and Tysabri.  She has the common MS bladder issues like urgency, not being able to fully evacuate, having to get up 5-6 times a night.   Spasticity is pretty bad in her right leg, sometimes even popping up like a Pink Flamingo when she’s trying to take a step and locking into that position.  Lately she’s been having dizzy spells many times a day along with slight slurred speech (try saying that that 5 times real fast!).

No matter the challenges we face them together.  She bears the brunt of the disease, I try to make it bearable.... the best I can.  I used to wonder what our life would be like without MS, now all I really care about is that we’re together, and doing the best we can with the situation we’ve been dealt.  Don’t get me wrong, we’re fighting this thing tooth and nail, and in the days to come I’ll be sharing our current journey into CCSVI diagnosis and hopeful treatment.

Thanks for reading, and please come back……I have so much to talk about.