Thursday, April 14, 2011

ROUND II

Hi everyone,

Well I am scheduled back in to Dr. Siskin in Albany, NY May 9th first thing in the AM!

So why am I returning?

Things have returned to where they were and in some parts worse and in 1 part not as bad. Parts that are worse are my left hand and balance. One part that is better than it was but still is creeping back is my choking.

I did go for a couple of follow up ultrasounds in Barrie. And quite frankly I don't believe they see everything, heck my first said my right was more messed up than my left jugular and when Dr. S went in my right was beautiful, my left was the only one stenosed and my azygos had reflux. So I'm going for the gold standard as Zamboni terms it, the venogram. I want to be certain. If there isn't anything, fine I paid a hell of a lot to find out. If there is thank G_d I followed my instincts!

Also hearing from many others that the sigmoid and transverse sinuses are areas the IRs are finding issues in as well makes me want to see these for myself. Also I want May Thurners ruled out. My legs have been the worst MS wise from the start!

I raised $480.00 through a draw and am still trying to raise funds - whoever wins the draw is a very lucky person because they get a professionally built website by my awesome hubby. That $480 basically covers my stay in Albany at a good hotel that includes breakfast and a light welcome home meal Sunday to Thursday. Has great accessible rooms and a later check out time than others. So I know I will at least sleep well! Outside of nerves. And that I'll be able to safely bathe.

Being in a wheelchair for the most part sucks! If I have to go on like this fine but I can't take any worse. I've been worse off in ways before and I don't have a clue how I did it! It must have been my beautiful baby boy who had me fighting all the way. And of course my wonderfully supportive husband. Now I find emotionally it is harder and the physical effects are affecting me more. Going through the CCSVI fight here at home makes it so hard. I'm not talking trouble with my family, but trouble with my health care system not allowing us to have this covered here! Also I feel embarrassed raising funds and I feel guilty putting our family further into debt. It's crazy! Furthermore while this can do great things one of the negatives is constantly worrying over re-stenoses and then the accompaniment of horrific thoughts of trying to find funds to go back AGAIN. Seriously we better win the lotto! haha

I have to sit down and do a new video too. My walking has gotten so sketchy along with balance issues that I came back from Albany with, that I stopped going down to the basement after last summer and I barely go down to our main floor unless it's to get the heck out for a bit! I find the sensation on the bottom of my feet is still much more intense from time to time. Right after treatment it was all the time better but then the heat wave and my air con crashing I think killed it... So most things lasted about 2 months. But can't forget there were two things that seemed worse afterwards. I didn't have tremors in my left hand before or the bad balance issues.

What do I think of CCSVI - I think there is something huge to it. I do not believe it's placebo that people can come back and do so much more. That wasn't my case I didn't have one of the bigger miraculous results but still I did have small miracles, like holding my hubby's hand and walking from the car through my garage to the stairs there. That was huge! I regularly got out of the car and felt my legs would hold me without a walker or cane I just held on to the side of the car - nothing to hold the weight of my upper half off of my weak legs as I usually do that with the walkers! Pretty amazing to stand for a photo with my son too! Also I was able to handle heat to 28C that was unusual for me to be comfortable in.

So in closing I am going back to see if there's more to fix or refix. And we'll see how I am when I get back. meanwhile the price has gone up and where I paid 5k before this time will be 6400 minimum. If he decides I require stenting, which I doubt he will but may, it will be 2k more. Still a heck of a lot more reasonable than most if not all places... Still kills me that if they'd allow us to pay for it here it would cost $1500.00 - I can get lipo have that banding surgery in my tummy etc... but I CANNOT have a venogram with ballooning here!

Hoping everyone who wishes to be is out of the burning building! Peace light n' love - OOOH and Angioplasty For ALL!! Anything Less is Unacceptable!!

xoxoxox,

Me








1 comment:

  1. Thanks for sharing a idea....Great post and informative
    Treatment for CCSVI

    ReplyDelete