CCSVI and Slovakia, Europe

Sharon · Post by **Sharon** » Fri Aug 28, 2009 9:32 am

Cheer wrote

Doctors are now hearing about CCSVI from their patients who have read it on the internet...something that just wasn't possible before.

This week I was at my neurologists office...he had not heard of CCSVI until I emailed him the research (prior to me going to Stanford in June).
He could not believe that I had heard about CCSVI on the Internet
Now he is very interested..he has been doing some of his own fact finding on the Internet and I believe he will be in conversation with Dr. D. in the not to distant future. Like everything else in life, you have pros and cons, and the Internet is no exception. I would be very concerned if I had young children or teenagers...there is just so much on the Internet that I would not want them exposed to. But, then we have the story of CCSVI --I would call it SUCCESS!
The Internet has allowed patients to be advocates for their own health care. If you do your research, the patient is able to present choices to their doctors....I think this is a good thing.

Jamie · Post by **Jamie** » Fri Aug 28, 2009 12:37 pm

I have expounded upon that very point at, I fear, great and tedious length to those around me!!

It's amazing and to think only a small portion of the world is online. How powerful will the change be in general when the whole world can share information and ideas.

CureOrBust · Post by **CureOrBust** » Fri Aug 28, 2009 6:27 pm

Arcee wrote:I've been thinking about Jamie's comment that the ulcer research took years and years to be accepted, and what that might mean for the CCSVI research and MS.

Although I agree the internet has sped things up considerably. My understanding of the guys who discovered the ulcer-infection link, the thing that "broke" that story was the fact that the scientists were actually able to prove it / confirm the presence of the bacteria via a culture. They could then document it for others to repeat. Previous attempts had failed, but due to a purely accidental mistake of leaving the cultures for a couple of extra days, they cultured the bacteria in the lab.

With CCSVI, we have Dr Zamboni's research which has demonstrated the results. I think as soon as it is has been repeated and confirmed by a number of independent researchers, it will become an accepted undeniable fact.

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Aug 29, 2009 12:02 am

When we talk about internet, I have to say one thing. Only ONE of my doctors uses email/internet but she doesn not use PDF!!!???

I only hope she understands at least something in English.
NOBODY wants to do the MRV to me in Slovakia.
I still have not mentioned but I see the stenosis on the 1st CT. I will try to put it on my web page so you can see it.

So I have to travell a lot, I have to transalte a lot, I have to print a lot and I had to have 2 CT´s as I can not rely on one.

I am really lucky even Dr. Alfons Schelling from Austria will look at the CD´s.
I am also happy I speak fluently German, so I can be part of http://csvi-ms.net/
Erika

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Aug 29, 2009 12:48 am

You can find 2 CT images of my jugulars here: http://sofista.sk/index.php?id=10
click on JUGULARS, it is in Word, I can open it so I hope it works.
It looks like stenosis, but of course I am not sure. This is the first CT and I still do not have the results from the doctor.
Dr. Simka found the stenosis in the same right jugular vein while doing Doppler Ultrasound.
Erika

Sharon · Post by **Sharon** » Sat Aug 29, 2009 5:06 am

Yes, it does look like stenosis.

Enjoyed looking at your other pictures...beautiful...you must be a world traveller!

Sharon

catfreak · Post by **catfreak** » Sat Aug 29, 2009 6:39 am

Erika,

Wonderful website, I wish I could read it. Photos are beautiful.

Cat

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Aug 29, 2009 7:01 am

Sharon wrote:you must be a world traveller!

Sharon

Well, people in my town call me like that.
As for Colorado, in 1992 I took a train from L.A. to Denver. I wanted to see Colorado country. That was beautiful!
Erika

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Aug 29, 2009 7:02 am

catfreak wrote:Erika,

Wonderful website, I wish I could read it. Photos are beautiful.

Cat

You can read it, main part is in English as well.
Erika

CureIous · Post by **CureIous** » Sat Aug 29, 2009 7:13 am

Sharon · Post by **Sharon** » Sat Aug 29, 2009 12:20 pm

Erika wrote

I wanted to see Colorado country. That was beautiful!

Yes, Colorado has spectacular scenery. I have lived here all my life and have never given a thought to moving somewhere else.

Sharon

ErikaSlovakia · Post by **ErikaSlovakia** » Thu Sep 03, 2009 11:45 am

I have good news again.
I just have received an e-mail from Dr. Franz Schelling from Austria. He has received my 2MRIs and my 2CTs. Of course he found something. He wants to discuss it with Dr. Simka in Bologna.

I had so much bad luck for last couple of years. I was thinking all the time, one day I would may be win a lottery. Yes, this is my lottery!

If somebody from Europe reads this, I repeat, that the radiologist from Slovakia found nothing and these 2 doctors found couple of problems and they are SURE!

So I am getting closer to my treatment.
Erika

CRHInv · Post by **CRHInv** » Thu Sep 03, 2009 1:20 pm

Yeah! Hang in there. It will come!

Sharon · Post by **Sharon** » Thu Sep 03, 2009 1:30 pm

Good news, Erika...Keep moving forward!

Needled · Post by **Needled** » Thu Sep 03, 2009 1:47 pm

He wants to discuss it with Dr. Simka in Bologna.

Geez, Erika, we've all been counting down the days until Bologna, but now you must be really excited. Good thing it's only 5 days away. To have the two doctors discussing your case is hitting the lottery, for sure!