This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Livabird,

You are so right about this being silly. We're still talking about "all caps" Let's focus on more important things; like us being LIBERATED SOON

Anna

I AM WONDERING IF THIS PROCEDURE CAN BE DONE WITH A GENERAL AENESETIC. I AM SO SQUEAMISH. THE THOUGHT OF EVERYTHING IS MAKING ME FEEL SO SICK. IT IS SILLY I CAN HANDLE PAIN BUT SEEING AND KNOWING WHAT IS GOING ON IS FREAKING ME OUT.

Let's get well! We have an oportunity just think what it looked like 3 years ago. What hope did we have? We are very lucky people.

Val

AND WE WILL. I JUST READ AN INTERESTING POST SOMEWHERE ELSE BY THE WOMAN WHO FIRST GOT THIS OUT TO CTV. SHE IS SAYING THAT A BETTER WAY THAN THE INTERNET IS FOR ALL OF US TO BRING THIS TO OUR DOCTORS AND VASCULAR SURGEONS AND THEN THE POWERS THAT BE HAVE TO LISTEN. I THOUGHT IT WAS SUCH A GOOD IDEA. I HAVE SPOKEN WITH MY DOCTOR AND GOT HIM LOOKING INTO THIS. HE SEEMS INTERESTED AND EVEN JOINED A PAGE I SET UP FOR INFO. ALSO WE SHOULD ALL BE GETTING PEOPLE TO SIGN OUR INDIVIDUAL COUNTRIES PETITIONS AND THE WORLD PETITION WE DO A A VOICE AND NUMBERS COUNT.

Hello

I have also been accepted by Dr G for a visit in June. I am sure it is the same partial story. You're in and we'll tell you when.
I have checked on travel from the US to Sofia and it doesn't seem easy at all.
There are some paths thru Frankfurt or London and then big layovers.
Lufthansa looked like the best shot. Does anyone have a comment??
It sounded like there is a hotel associated with the Hospital.
I already have my scan done...so I am lucky, that I can go right to the procedure...
There is a growing anticipation to get close to the one solution that can impact a positive change in your life. I keep looking for the 'Fast Forward' button so as to hurry up the waiting.
Wish you all the best...and thanks for sharing your notes along the way.

Mark

YES MARK THERE SEEMS TO BE A CHEAP HOTEL RIGHT NEAR TOKUDA HOSPITAL I THINK IT WOULD WORK OUT TO 30-40 US DOLLARS I ALSO GO IN JUNE/JULY. THE WAIT IS A KILLER. I AM FORTUNATE BECAUSE BEING IN THE UK IT IS SO MUCH CLOSER. I HAVE HEARD NOTHING BUT GOOD THINGS ABOUT LUFTHANSA AIRLINE.

Thanks Chicagoboy
Hope we meet you in Sophia in June.
All the best!

GEEPS I JUST HEARD FROM DR, SIMKA THEY MIGHT BE ABLE TO FIT ME IN IN APRIL/MAY BULGARIA ISN'T TIL JUNE/JULY. THE EARLIER THE BETTER THO I THINK I WILL PICK POLAND. I GUESS IT IS THE ONLY GOOD THING ABOUT HAVING PPMS DR. SIMKA SAID A FEW MONTHS AGO HE WOULD TRY TO FIT ME IN AND IT SOUNDS LIKE HE HAS. WOW I AM ON CLOUD NINE.

Hi Livabird,

Congratulations
I'm so happy for you

Anna

THANKS ANNA NOT SURE OF DATE YET. BUT I AM BOTH EXCITED AND NERVOUS. I AM SOOOOOOOOOOOO SQUEAMISH OH WELL MY SYMPTOMS ARE SO BAD LATELY THAT I NEED SOMETHING DONE. IT WILL BE GREAT HAVING SOMEONE LIKE DR. SIMKA WHO IS LEGEND. TOO BAD THEY DON'T HAVE A JAPANESE BUILT HOSPITAL. I AM JUST SOOOOO EXCITED THOUGH.

livebird,

hold on girl, the nightmare is almost over!

I am praying for you

PWS

Hi everyone,

On March 2, 2010, I went to my local MS Clinic to get my MS epicrisis for Prof Grozdinski. I asked the treating neurologist for my MS epicrisis and he did not know what that was and asked me why I was asking for that? I told him that I am scheduled for the CCSVI surgery in April, 2010.

I was lashed out at and basically made to feel like, how dare I ask him to do extra work on my behalf when I had chosen to get treatment outside of the country and desert him after everything he has done for me.

I told him I would be going to Bulgaria to have the treatment. He responded by asking me what makes me think that a backwards, 3rd world country like Bulgaria would have the right equipment when Canada does not even have the equipment to test for or perform the surgeries.

When I told him that a lot of people were saying that a lot of their MS symptoms are gone after having the procedure, he asked me if I knew with 100% certainty that Zamboni was not paying them.

In the end, I did not get an “epicrisis” so I am photocopying my file and taking that with me to Bulgaria.

In summation, I was treated like a deserter, like I was crossing a picket line and met with anger because I was choosing to end the hell that I am in.

If anyone else has had a similar experience, I would appreciate some feedback.

Not feeling good about my choice,
PWS

pollywogsis,
I am sorry to hear that . . . I am not surprised as I've said, I wonder how happy my doctor is going to be when I have to ask for my papers.
He was not acting professionally. If anything he should have given you a professional opinion and advised you on what to educate yourself on before going through with this. And what is this about Zamboni paying these people??? Do the doctors just think it was those few people on W5 that have undergone treatment? This is clearly a case where we know more then they do and it's a knee jerk reaction on their part. Unfortunately, it's to be expected.
Best of luck to you!
Don't feel bad, you did nothing wrong.
a

Polly - I have to agree with annad. I also have to add that I discussed the possibility of my going to Bulgaria with my GP NOT my neuro and she was quite supportive. She had sent me for doppler test and had my results when she appologized for not being able to get a vascular surgeon to help me and said she understands my position and would probably do the same if she was in my shoes. Hope this makes you feel better!

youbetcha,
do we have the same GP??? Mine said the same thing to me!
If I go overseas though, I will have to contact my neuro for my papers.
yikes