CCSVI and Slovakia, Europe

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Arcee » Wed Oct 07, 2009 11:15 am

BBE, thanks for the detailed update. The comments about the potential surgery are really interesting. Best of luck moving forward for you and your girlfriend. Please keep us posted!

Erika, your journey has been such an arduous one. I am sorry it is not gong more smoothly right now. But please know that so many of us are wishing you well and really believe that your energy and spirit will enable you to persevere.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby ErikaSlovakia » Wed Oct 07, 2009 11:38 am

Arcee wrote:But please know that so many of us are wishing you well and really believe that your energy and spirit will enable you to persevere.

I know that. THANK YOU!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Needled » Wed Oct 07, 2009 3:12 pm

Erika, If I understand BBE's post correctly, Dr. Simka is planning a trial? If so, would you be able to participate in it? In the States, most trials don't cost anything for the patients, just travel and expenses, but the procedures are paid for. Could you ask him if that's possible?
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Postby ErikaSlovakia » Thu Oct 08, 2009 12:25 am

Hi Needled,
yes, you understood well. Dr. Simka of course knows about my case.
I am still angry, because Slovakia is member of EU. All countries must use the form E112 in these cases. It is a law. My insurance for sure covers it. My ins. company for sure has the money. As you saw the price will not be that high.
I was told by some friends that yes, I must bribe. If not they will do these kind of complications.
Well I do not know. I just know people must do it often in my country. I have never done it so I do not know.
As I said I did everything I can not do more.
It was really end of story, but of course there might be the second part of story.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby mrhodes40 » Thu Oct 08, 2009 1:17 am

dear Erika it is the middle of the night here and I got up just to say to you we will wait with you. Whatever it takes however long we will be waiting with you. we are all waiting for so long to get treatment, some few of us got lucky to be close to Dr Dake others have not and will need to wait. Let's all wait together and be the best friends .........
only those of us with MS know what this means, we all understand
marie

ps I do not blame you for being angry!! Bribes? for heaven's sake!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Ernst » Thu Oct 08, 2009 1:19 am

Of course there is "second part of story" :D You have fight hard.. now, take a rest and.. fight again. You have clear goal, so keep moving to that direction. Someday, there might be happy surprise, things will be ok.. but never give up.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby BBE » Thu Oct 08, 2009 3:06 am

Erika, I was reading few articles and policies on internet and from my understanding it is as following (in short):
You will ask your GP for a visit of a specialist (e.g. angiologist) anywhere in Slovakia.

1. Doctor-specialist must fill the proposal in Slovak language where he states e.g. that it cannot be diagnosed and performed in Slovakia, reasons, address of the clinic in Poland, etc. and pass it to the director of the hospital.

Attachments:
a) confirmation from the clinic in Poland that they will accept form E112SK, which means that a polish partner insurance company of your insurance company will pay for the procedure.
b) health documentation for the insurance company doctor who will be approving it
c) approx. costs calculation
d) your approval

2. The hospital will then file it at your local insurance office.

3. When the proposal is approved (must be in 14 days) you should get the E112 which enables you to have the surgery in EU.

At what point are you having problems? I think that prof. Stvrtinova should not have any problems with the proposal. I did`t find anything regarding the specialist being from your region. Or maybe the problem is that the clinic where prof. Stvrtinova works isn`t a hospital just a private clinic? Or that they still think that it can be diagnosed and performed in Slovakia and therefore they are afraid to fill it? Because maybe the problem is that it is common to perform ballooning or stenting in arteries in many hospitals in Slovakia. It was just never done in jugular veins, but in fact it is possible to be performed here...hmm, complicated :)
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Postby ErikaSlovakia » Thu Oct 08, 2009 8:53 am

BBE wrote:I think that prof. Stvrtinova should not have any problems with the proposal. I did`t find anything regarding the specialist being from your region. :)

Yes, you have correct information. I have the same.
After the first contact with the insurance company 5 or 6 weeks ago, I was told it was enough to contact a specialist. They did not say where. I really believed prof. Stvrtinova would and could do it.
She sent me an e-mail I think 2 weeks ago: "I can not do that because the head department of your ins. company in Bratislava told me, a doctor from your region must do it." Well, the ins. company in Nitra told me to contact my GP or neurologist. I think this was very stupid idea. The ins. company in my town also told me my GP must do it. I have the form here and they really want some reccomendation from a specialist - the head of special department of the clinic. We do not have any clinic in my little town. I called Bratislava three times - the ins. company, I have got three different advices.
Prof. Stvrtinova works in a state clinic, it is not private. My GP wants to help me but she is quite lost. Of course Dr. Simka gave me the information about the date, form E112 SK...
I am in a circle.
I really thought prof. Stvrtinova can do it as she is the head of angiology in Slovakia.
I am tired. I can not do anything anymore.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby ErikaSlovakia » Thu Oct 08, 2009 9:04 am

mrhodes40 wrote: Bribes? for heaven's sake!!

Yes, it works like that in my country. I just do not know how to do it.
I am 37 and I still have not learnt how to do it.
I gave may be three times in my whole life chocolate to some nurses in hospital but after my stay in hospital not before.
Many people tell me I am naive and stupid if I believe it works without the bribes.
Well, first of all I do not agree with that and secondly I think I am too old to learn these thinks.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Location: Slovakia, Europe

Postby Sharon » Thu Oct 08, 2009 2:14 pm

Erika - you have endeared yourself to many people across the globe. You have been relentless in your search for getting your tests completed. Many of us would have given up long ago. You are a strong, young lady and once you have had a chance to rest and renergize, you may be able to find the answer to all the insurance problems. It is understandable that you are exhausted --- rest easy and gain strength from all your friends here on TIMS.

Take care dear Erika!
Sharon
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Postby ErikaSlovakia » Fri Oct 09, 2009 8:10 am

Thank you Sharon.
I still believe something good will happen.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Location: Slovakia, Europe

Postby ErikaSlovakia » Sat Oct 10, 2009 7:55 am

This is exciting.
5-7 patients from Slovakia are organizing trip to Poland. Dr. Simka gave them the date already. They will go to see him on November 3rd.
It is a new type of tourism :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby Needled » Sat Oct 10, 2009 7:59 am

Erika, Are you going? Can you be part of it? If not, can't they find room for one more person? You're little, you won't take up much room in the travel van. :D
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Postby ErikaSlovakia » Sat Oct 10, 2009 8:08 am

Needled wrote:Erika, Are you going? Can you be part of it? If not, can't they find room for one more person? You're little, you won't take up much room in the travel van. :D


I was by Dr. Simka in August already. I have the diagnosis. I was the first Slovak patient. He is not going to do the surgery, only Doppler USG.
But you are right , I am little.
Right now I am only waiting for a miracle. He wants to operate mi on October 27th. I wait until my insurance company wakes up.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby Needled » Sat Oct 10, 2009 8:21 am

I realized after I posted that was probably the case, but I just got so excited I didn't think it through. Well, on the bright side, you're that much further ahead of everyone.
Miralces happen, Erika. Maybe if you're a bit more rested now, you can push it along to the end and get that paperwork through. You know we're all wishing and hoping and praying for you. We're not giving up.
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