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 3rd 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 23rd, with her follow-up appointment on March 23rd 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.
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