CCSVI and Slovakia, Europe

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

Postby ErikaSlovakia » Sun Oct 04, 2009 12:18 pm

bestadmom wrote:
Maybe Dr.Simka can help to translate for your GP?
Michelle


No, it would not be accepted here unfortunatelly. Dr. Simka is not a Slovak doctor.
Just forget it. You have enough your problems. This is another world.
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 ErikaSlovakia » Sun Oct 04, 2009 12:27 pm

mrhodes40 wrote::cry: :cry: :cry: :cry: :cry: :cry:

This may be not a working idea at all but here it could work: can Dr Simka fill the paper out and your doctor sign it??

love and light to you dear Erika
marie

I am sorry but the health insurance company has a primitive rule. Only Slovak doctor from my region can fill it in. Until they learn English and understand Dr. Dake it will take another 20 years at least. The most of young doctors go to work abroad, of course. There was communism in Slovakia only 20 years ago. I live in a small town.
This town has only 30 000 inhabitans.
Do not worry I must learn to live here (I still have not). These kinds of problems happens more often to me.
You have enough your problems.
May be my GP manages tomorrow. I will see.
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 Ana » Sun Oct 04, 2009 1:47 pm

Hi Erika,

I already wrote something for you in the German forum.

I just have a maybe stupid idea: Do you know somebody in or around Bratislawa who agrees that you go to the registration office in Bratislawa and registrate there? Then you can go the doctor in Bratislawa. And later you can re-register to your real home town.

I say that because I know that some people here in Germany register in a town they don't really live by using the address of a friend, e.g. to allow their children to go to a school in this town etc..
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Postby muse » Sun Oct 04, 2009 2:45 pm

I just have a maybe stupid idea: Do you know somebody in or around Bratislawa who agrees that you go to the registration office in Bratislawa and registrate there? Then you can go the doctor in Bratislawa. And later you can re-register to your real home town.



That isn’t stupid at all dear Ana that’s just a very special way of creativity! 8)
I’ve already wrote some ideas in the cvsi-ms.net too. If there will be no way out for Erika we all should think about to start an international fundraising for that brave girl cos what goes around, comes around! How about that?
Best
muse
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Postby CNClear » Sun Oct 04, 2009 3:41 pm

Oh Erika! I hate your country for doing this to you! What about filling out the paperwork for financial aid from Stanford? I have them all from when Alex sent them to me...If you give me your email, I will send them to you and maybe there still is a way to get this done!

Don't give up, please! It must seem very hard not to...say some prayers and we all will, too...a fund raising effort is not out of the question. I am going to think about how we would go about doing that...

In the meantime, send me your email address and I will send you the papers...you may have to translate the dollar amounts to US dollars, but other than that, I don't see a reason for Stanford to discriminate against you because of what country you are from...our health care system takes care of many many illegal aliens...

You can always put my address down as yours...and come to stay with me, in Atlanta!

Not giving up on you,
Lisa aka CNClear
dx 1983 RRMS, age:50
Dake called!!!!!!
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Postby ErikaSlovakia » Sun Oct 04, 2009 11:31 pm

Hi all!
Thank you very much for all good ideas. I have been crying for two days and I can not stop my tears.
No thank you, I do not have power to try anything else.
I am too weak ant too tired. Of course I go to see my GP.
It is not going to be as much money as in the USA but too much for me.
Just forget it and save your energy for 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
ErikaSlovakia
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Postby CNClear » Mon Oct 05, 2009 12:00 am

Erika,

Just let me send the financial aid paperwork to your email address...what IF they will pay for 100%??!! That is an option on their paperwork: to apply for 100% financial aid....

Please...Stanford is a private university and so they can do what they want as far as who gets $ for what and who doesnot...you wouldnt even have to be a citizen of the US!

Just rest a bit and see if you can do this, once you get some rest...

Lisa
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Postby ErikaSlovakia » Mon Oct 05, 2009 4:05 am

The end of story.
Good bye.
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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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby RuSmolikova » Mon Oct 05, 2009 4:52 am

Erika, it is time to call the TV.
It is time to say to all Markiza watchers: "I am here, I did a lot of hard work to have the surgery and now when I am in front of the door of Mr. Simka,MD I would have to give up! Please, I need money because my insurance company will not pay any Euro. Hey you - do not you want to help me to proceed the surgery in Poland? It is my only chance.."
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Postby daniel » Mon Oct 05, 2009 11:09 am

Erika, you've gotten so far already. You need to keep trying and get through this dumb bureaucracy.. I know there must be a workaround for this
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Postby BBE » Wed Oct 07, 2009 5:17 am

Hi Erika and others,
yesterday me and my girlfriend came back from Dr. Simka. He did the Dopler USG on her and 2 other patients on that day.

Here is the report:
Color-doppler sonography of jugular and vertebral veins
Right internal jugular vein is stenosed in its middle portion: the vein in this area is narrowed to 3 mm.
There is pathologic valve/septum in the junction of left internal jugular vein with brachiocephalic vein. This structure significantly impaired venous outflow from the internal jugular vein. No pathologic reflux has been detected in both internal jugular veins. There is normal flow through vertebral veins, both in the supine and sitting positions, and there is no
reflux in these veins. Interpretation of the examination There are significant stenoses of the both internal jugular veins. These strictures can be defined as chronic cerebrospinal venous insufficiency and might be related to the diagnosed multiple sclerosis.

Besides we discussed following topics:
Surgery:
e.g. that there is a 3rd option (open surgery) which means (from my understanding) taking spare veins from legs and replace the narrowed in neck. This is perhaps also an option for removing unwanted stents.
There is a possibility to pay for the surgery and based on the price list we saw in the ambulance it is cca. 1000 EUR for ballooning, 1800 EUR one stent, 2750 EUR two stents. The insurance theme (for Slovakia) was already discussed here. He said that there are limits for a year and this year is probably full. But in January there will be new list. EDIT (Do not take this as definite; the best way is to contact him and ask)
His first CCSVI surgery should be next week.
Blood-thiners (Anticoagulants): Not sure if I understood well, but there is an oral blood-thinner in US and in EU we use Heparin, which is not very expensive. I was said that Heparin is not given orally which leads to more stable dosing, what should prevent any complications like bleeding....

CCSVI and MS: Dr. Simka believes that CCSVI is the main cause of MS. He is also in contact with other Drs (Dake, Zamboni,...) He may have the final results from Dr. Zamboni but cannot distribute them.

USG: I was watching the procedure and saw the narrowed veins on both sides, but I cannot prove that as I don`t have the right knowledge. My GF only reported later, he pushed a little bit harder than she thought he will.

Trial: He said he is preparing a clinical trial with control group. My question was if there will be a "placebo" surgery. He said no, because it is unethical and the control group will only be monitored as it is.

Supplements:
Diosmin: Of course hard to say about its efficacy but it is supposed to help in legs - hard to say in neck.
He mentioned Quercetin by himself as a possible supplement.

Our next steps: Try to do USG in Kosice (city in our region) with report from Dr. Simka and see what the specialists think about it.

Recently I found that there is already a nice info about CCSVI on Wikipedia...
http://en.wikipedia.org/wiki/Chronic_ce ... ufficiency

I don`t remember anything else at the moment...I may write later something more.
Last edited by BBE on Wed Oct 07, 2009 9:37 am, edited 1 time in total.
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Postby ErikaSlovakia » Wed Oct 07, 2009 9:10 am

Congratulations!
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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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby ErikaSlovakia » Wed Oct 07, 2009 9:20 am

BBE wrote:The insurance theme (for Slovakia) was already discussed here. He said that there are limits for a year and this year is probably full.

They are still sending me from one doctor to another. Nobody knows who is supposed to fill in the form for the insurance. The insurance company is giving me and to the doctors different information, but in fact it is possible. It looks I would have to bribe somebody to do it. But I am soo tired. I am glad I go to the toilet and eat a little.
I hope you have more luck in Kosice!
Your girlfriend is lucky she has somebody. I have to manage everything by myself.
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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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby MaggieMae » Wed Oct 07, 2009 9:45 am

Erika,

For now, rest. You will regain your strength and will be ready to fight another day.
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Postby ErikaSlovakia » Wed Oct 07, 2009 10:00 am

MaggieMae wrote:Erika,

For now, rest. You will regain your strength and will be ready to fight another day.

Yes, you are right, I MUST rest.
I swear, as soon as I I have after the OP one day and I feel better, I will go to find a job to Vienna (Austria). I AM NOT ABLE to live in this country!!!
I was political refugee when I was only 16. I went illegaly to Austria. I was supposed to go to San Diego, but the velvet revolution came. Since then I was trying many times, but I always had to come back. Last time I came back from Switzerland because of difficuilt attack.
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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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

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