We all welcome you! Could you please respond to this post, that way we can have your information in one place, and you can take any questions the gang might ask. I'll add your previous posts here for you:
Posted: Sun Jul 05, 2009 11:24 am Post subject:
Hi: I have tried to post but am not too bright about this kind of thing. But I saw what you wrote about going to Stanford in August, and I want to let you know that I had surgery June 17 at Stanford by Dr. Dake, et al.
He put a stent into four veins: left jugular, right and left subclavian and zsygos veins. I had no pain after the procedure but just a tiny bit of discomfort (not even but just where I noticed something slightly pressing in my left jugular).
Since then I have had the following improvements: near absence of muscle pain in the calves; no more discolouration in hands and feet; no more huge headaches I used to attribute to sinus but that was in error. Hands much less shakey, and a couple of days ago I went into our pool and afterwards lay in the sun for one hour, AND NO MORE HEAT INTOLERANCE.
Now I am not saying that these things would happen to you after surgery, but I am saying that having had this disease for nearly 30 years, I saw those benefits.
The medical/surgical staff at Stanford is absolutely stellar. But if you are told this is will be out-patient procedure, count on spending one night at Stanfor hospital, at least, as I have had to as my surgery ended up being 4.5 hours.
I decided to undergo this procedure because, as a practical matter, there is really nothing else out there to help, and I am not a big proponent of the various medications that "mitigate" but not a lot. So good luck. Daisyduck
Hi, Marie: As I said I've had this thing for around 30 years. I had an almost "violent" onset, but a year or two after becoming symptomatic I went to Florida, Cocoa Beach, to be treated with snake venom and became asymptomatic for probably 15 years after that, continuing with home injections. But the FDA interfered with Miami Sepentarium's providing venom for this purpose, and the medicine went south to Mexico where it disappeared eventually around the time of live cells and eventually stem cells.
I am still on my feet and use a cane to ambulate, but Dr. Dake strongly advised me to somehow get a "trainer" (can't afford) so I can get off the cane as using one help wekens your body. Instead I am exercising on my stationary bike as many 5-minutes sessions a day as I can handle and have time and inclination for. I also have a balloon tied together (without air) and slip it around my ankles and pull one foot out, turn the ankle, to the side and back, and then the other. I think I was not looking for a miracle but wanted to see if the disease process could be stopped or at least slowed, and I am greatful for the results. I think I had RR MS, but by now it has become slow progressive. I wish you the best. You will be surprised to see just how many of your veins look like they're angelhair pasta instead of quarter inch vessels full of blood. And it's apparently mostle those same veins I mentioned bevore. I would be interested in knowin what Zamboni has with regard to the thoyroid glands, veins in it and MS. Has anyone actually read up on it yet? Alos, Marie, I did not get how to answer and be on the right forum and hope you get this. Best regards, Daisy
My question is, How did you hear about Dr. Dake and the stent treatment for CCSVI? Just click on the "post reply" button below, and you're all set.
Looking forward to hearing more about how you're doing, and a big TIMS welcome!!!!