After quite a bit of trepidation, I had my CCSVI treated recently. The procedure was performed by Dr. Arata at Pacific Interventionists. It was very illuminating to have Dr. Arata explain his approach. This is me explaining what he told me so don't be upset if I don't explain it perfectly.
The way I understand it, his method can best be described as a modified Kuwaiti method where the focus is on valves, specifically malformed or malfunctioning valves, rather than ballooning stenoses. According to Dr. Arata, fixing the valves usually fixes the stenosis. And a stenosis can usually be related to a bad valve. By this method, the valve is stretched open until it more or less snaps open. And stays open. Once that happens blood flow tends to return to normal and the stenosis goes away.
In fact, he reports that since they started to use this method in July their restenosis rate has been a whopping 1%.
To him, this should be a long-lasting fix as the valves are pretty much permanently snapped open. Ironically, these are the very same valves that are designed to prevent back flow. This was an important design feature, back when we used to walk on all fours. It probably shouldn't be considered if you are thinking about a career as an astronaut, an acrobat, a fighter pilot, or a yoga master. Since, I've had it performed, I guess I'll have to avoid falling head over heals in love as well, but these occupations were unchosen for me long before I was diagnosed with MS.
The advantage of this method,on the other hand, at least in my case, was no need for blood thinners and no special stay on your back instructions.
In my case, Dr. Arata was sure my valve malformations were congenital. In any case when he went in, my right valve wasn't as bad as he thought but he treated it and ballooned the vein. That restored normal flow to the IJV and was no longer flowing down collateral veins. He found a major problem with my azygous valve as it was way too thick and was causing the blood to flow backwards. Normal flow was restored.
So how did it affect my MS symptoms? First of all, I would like to submit myself as an ideal MS patient to gauge these results. My MS started with an episode of optic neuritis over 20 years ago followed by an episode of skin numbness. I thought I had this MS thing mostly licked until I fell while going on a spring run over 12 years ago. The next two years were a rapid slide, followed by a slow deterioration from which you could draw a straight line to when I was treated. My problems are almost exclusively on my right side, with severe foot drop, pretty much useless right hand and weak muscles all down my right side. I've used various types of AFO's for over 10 years.
I am my own control group I guess.
The other part is that, though I've had awful MS depression in the past, I've been upbeat and energetic in spite of my MS. So placebo is not likely to factor and the things I couldn't do, I consistently couldn't do in spite of all the things I've tried.
The other unique aspect of my MS is that I was VERY fortunate not to be plagued with cog fog, mental or physical fatigue or muscle spasticity. My career continued unabated and I tried to stay as active as my weaknesses would allow. In fact I had to work weekends and 14 hour days in a high pressure job in the month leading up to my treatment. I also was able to ride my bike in the MS bike tour three years in a row and made the full 65 km even though at the end, my right leg was pretty much a passenger. I am proud of these accomplishments and was very leery of risking anything to upset these good things I had going on.
So what effect would having this procedure have on someone like me, with plenty of accumulated stubborn disability, but none of the things have seem to respond well to liberation therapy?
An unmitigated, complete, and huge ....
FRIGGIN SUCCESS that's what.
At first I noticed nothing. I was relieved though that I felt normal and hadn't harmed myself. The things that I could do, lying in bed recovering were within my normal limits.
It wasn't until I got up and about the day after that I started to notice, that getting out of bed was easier, that my arm was stronger and that my knee was much more stable. I could hold things in my hand much more easily. I had filmed myself walking (or my version of it) without my AFO the day before and the day after my procedure. I knew it felt a bit better but the difference on video was stark.
It's only been a few days and I keep gaining. These gains are more to my core and stabilizer muscle strength than fine motor skills, but I am hoping these will come. In spite of my best efforts, I have a lot of muscle wasting in my right muscles.
So far, here are the things that I can do that I definitely was not able to do before:
- can curl my arm without a waggle
- can lift my leg while sitting
- can wiggle my toes
- my foot drop is far less worse and I now use my mildest AFO (not the fixed boot I was using) provides plenty of lift.
- my walking is more square.
- I can use my right hand to help wash my hair.
- I can keep both hands on the steering wheel and steer with my right arm
- I can hold on to a cup of coffee in a paper cup without it feeling like a red hot iron (this was a symptom in my left hand).
- I can drink a beer with my right hand.
Today I went down to the basement to try a few exercises. I could curl twice the weight with my right arm that I could before and many more reps, I could do a pushup much more easily, could use a rower without having to hold the handle in the middle with my right hand. The elliptical trainer felt easier.
But I will have objective measurements done by a third party to report shortly. I went in to run a battery of objective tests right before I left. For now, I would comfortably say that I erased at least four years of decline in four days.
In the meantime it is to me, truly, a Christmas miracle.