CCSVI UPDATE

It’s been a month since my last blog update so I guess it’s time because there are some new things to discuss. I’ll begin with my own health update…pretty much the same which is a very good sign! I still have pain in my armpit/chest area that is even spreading to my side now. It’s not intense but it seems to always be with me, kind of like a headache that you just can’t get rid of so I just deal with it. Physically speaking I’m still feeling strong and able to get out and about to keep busy; that is outside of the extreme cold and snowy episodes we’ve had in Calgary that keep me shut in. Unfortunately we’ve experienced too much of that but hey it’s winter, what else should I expect? Well I won’t even delve into the global warming nonsense, yes just my opinion but I think the whole thing is bunk. It’s been pretty darn cold and I haven’t seen this amount of snow since I was a kid but I’ll leave it to the likes of David Suzuki and Al Gore to defend that fallacy (comments welcome). At least it made for a good ski season which is now over for me and CADS but it was a great year! I’m really happy with my progress but I don’t know where to go from here. The little slopes of Canada Olympic Park were great to learn on but I now need more. I do have a mountain outing at Nakiska coming up which will be really fun to get more than a short 5 minute run in before another lengthy chair lift. In order to qualify for the mountain trip all mono skiers had to demonstrate the ability to get on and off the chair lift alone, definitely not an easy task! Getting on is not so bad, I have to plant my outriggers on either side of me and lift myself and the sit-ski high enough for the chair to come underneath and pick me up. I could achieve this relatively easy because I do work out and I’m definitely strong enough for that but getting off is another story! As I’ve said, my butt is strapped onto this bucket and when it comes time to unload you simply can’t move like a regular person to just stand up and ski down the ramp away from the chair. I have to shuffle my body to slowly edge forward on the chair and then with momentum created with my arms, lean forward and hope to slide off the chair and down the ramp, it is very difficult! Fortunately I’ll still have my CADS ski partners with me to assist, God bless the CADS volunteers! It would not be possible for me to do it alone, I need someone to pull me upright if I wipe out and it would be near impossible to strap myself into the sit-ski alone. One thing was very evident to Cheryl who was my volunteer both last year and this year. She noticed that I’m much stronger and don’t tire or fatigue nearly as easily as last season. Hmmm, what can I attribute that to? Working out, the angioplasty procedure, maybe the new supplement I’m taking, who knows but its encouraging and exciting! The new supplement I’m taking is called Vitality; it promotes physical endurance and stamina, increased mental acuity and focus as well as sexual libido. The testimonials have been amazing but I know it has increased my energy levels, send me a message if you’d like to ask about it.
Now for another health update, I saw the vascular surgeon today, a very interesting meeting. When Dr. Moore came in he said that he had reviewed the synopsis from my doctor and went right into what my concerns were. I told him that after I had my ultrasound that I was looking for an expert opinion on the results and conclusions of Dr. Steed from the ultrasound clinic. He replied by saying “I don’t know how you ended up in my office but it’s actually a good thing, I’m on the expert advisory panel for the MS committee commissioned by the Saskatchewan government to review all the literature from around the world with the plan to come up with a research protocol for Saskatchewan and eventually other parts of the country”. When I originally asked my GP for a referral to a vascular expert she said that she had no idea who to send me to and would have to research it, she did an excellent job to say the least. Dr. Moore said he is seeing about 40 patients who have all had the angioplasty procedure and everyone has gone on to have their veins clot off, something that did not surprise him. He explained that neck veins are very slow flowing and angio essentially rips the vein open under controlled circumstance which creates a tear to the inner lining of the vein which will then remodel itself. Problem is that when you create a tear in a slow flowing vessel it clots. He went on to say that the link between whether veins are open or closed and the MS disease process is still very unclear. He’s had patients whose veins had gone on to reclot but the patient feels better (yes the placebo effect).
He explained that we have two internal jugulars, a vertebral vein at the back of the neck that is even bigger than the jugulars and the azygos system which is a network of veins the size of his arm. Going after two veins when we’ve got an entire collection of veins that can pick up the slack doesn’t make much sense to him. In my case, a secondary angio needs the vein open to get the wire in and if it’s totally collapsed there is nothing you can do. If my other jugular becomes blocked and he was to “bang” it open the risk of bilateral jugular venous occlusion can result in permanent blindness! This is a very low risk but a very bad consequence! He said the literature coming across his desk now from the U.S. and around the world can’t duplicate Dr. Zamboni’s findings so the link between angio and MS is starting to become weaker and weaker. He recommended that I follow my MS treatment program, I’ve got good flow from the left and all other veins in my neck are flowing well so unless my symptoms take a complete nose dive there is not much to be done. If my condition deteriorated markedly he would order another ultrasound and examine our options from there.
I questioned him about the expertise of the Sunridge Diagnostic Clinic and he said that Dr. Steed is an excellent ultrastenographer (new word for me) and one of a few that is a vascular stenographer which gives him a leg up on other centers. He said that for most studies they get from other centers they send to him to cross reference and verify because his results have been very accurate. So overall it wasn’t exactly an uplifting appointment but it did emphasize the need for more testing. Bottom line is that based on the data he’s seen so far he does not recommend the procedure…unless there is high grade stenosis and symptoms are markedly deteriorating. In this case, as long as a person understands the risks and has the money, then give it a try.
On a different note, I was just contacted by a new MS website called unitems.net. The site is an online community and support network for people affected by MS. The site is intended to connect with others through discussion forums, blogs, and things like expert Q & A. We have many sites and MS forums like this but it might be unique as it develops but worth checking out. The interesting part is that it is sponsored by Merck Serono; yes a pharmaceutical company that says the site is committed to unbiased content. Well we’ll see how that works out because as I perused the site there was nothing about CCSVI. I suppose it’s up to us in the MS community to address CCSVI issues. I was asked to write a guest blog for the site so I might put the test to the content and independence of the website, stay tuned.
I go for an MRI tomorrow and then see my neurologist at the end of this month. I’m very curious to see what if anything has changed in my brain during the last 6 months. I’ll write another blog to update my situation at that time. Possibly earlier if anything interesting happens on my ski trip!
LC