Friday, May 28, 2010

Eenie, meenie, mynie, mo...

Poland, Bulgaria, Scotland, India, US...my list of potential places to get tested, and hopefully, treated for CCSVI.  Blatantly missing is Canada...but I'm not going to go there because I just get too outraged when I think about the fact that I was naive in thinking we had one of the better universal health care systems in the world...ha! Double ha!! 

So, I put my name on the waiting list for Poland (they're booking into 2012)hmmm... not so good.  I was considering Bulgaria, but something was preventing me from contacting them...?? Then the CCSVI UBC Facebook group posted a link to a clinic in Scotland...I'm thinking, I've always wanted to go to Scotland...oh, but you have to put down a deposit of £100...hmmmm, could be a scam, I'm thinking.  'Better check it out.'  Turns out I've heard of the director, and the clinic specializes in alternative/complementary MS therapies...so I go ahead and pay the £100 and haven't heard anything since. Hmmm...maybe it was a scam???  India is too expensive, and the US is still an option, but I'm sure everyone and their dog is trying to get in to see the few doctors who are performing the procedure, and anyways they probably charge an arm and a leg.  What to do, what to do???

And while all this is going on, I'm thinking about the two doctors in Germany whose names appeared on a list of doctors performing testing and/or treatment.  Although I haven't seen their names mentioned in any of the CCSVI facebook groups, the thought pops in my head..."I'll be in Germany this summer...I wonder if..." so, I acted on the thought and emailed the first doctor, whose email came back undeliverable. This is not a good sign. I email the second doctor who emails me back and writes:
thansk
 we can offer you a date in june
we start always first with MR venograms and doppler and then evaluate
all and perform also if necessary ballooning
That was the email...Holy cow!!
So who the heck was this Dr. Vogl?  Turns out he specializes in oncology radiology and he's the department head at the University hospital in Frankfurt.  He pioneered some experimental procedure for treating cancer...there's a Facebook page dedicated to him.  This is good...a radiologist who isn't afraid to try new things!  This is looking good.  Oh...and did I mention he performed this experimental treatment on Farrah Fawcett?!  Unfortunately, we all know how that went :(
At this point, I'm still unsure about what he's like with CCSVI...has he even done any????
To the TIMS forum I go...where I find mixed reactions to Dr. Vogl.  Most say he is very professional (that's good) but that he doesn't explain much and tends to be blunt.  In short, he is not warm and fuzzy!  Hello people!...he's German AND a specialist...this is normal! LOL  I feel safe in saying that because my entire family is German (hence the trip to Germany)  One comment that did worry me was that he does the testing and then declines the procedure???? But I think they meant declines to do it immediately after, as these people were asked to come back in six weeks.

 I made it very clear that my expectations are that I want to be tested and have treatment WHILE I am in Germany.  I think he got it, but his emails are very short and blunt...it's like trying to pull teeth to get information without feeling like you're pestering him with emails (because I have questions!!)

So I have an appointment for testing in Frankfurt on the 2nd of august at 12 noon and if I have CCSVI I will have the balloon angioplasty done the following day or the day after.

And I'm thinking, "Is this Fate...Divine Intervention...or what???"  I mean, I manage to find a surgeon who does the procedure, in Germany, and can do it while I'm there on vacation...and its cheaper than Poland or Scotland! Ha!  Double ha!!


 

2 comments :

  1. I'm excited for you. I hope it all works out. It just seems so unfair that we can't get this simple procedure done right here in BC but like you said, don't go there :)
    I will continue to follow your Road to Liberty here. I hope to be getting on the road too but need to gather the funds.
    Best wishes.

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  2. Good luck! I love the description of how you acted on your "I wonder if..." thought and it turned into an appointment! Thanks for blogging about your experience.

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