CCSVI and Slovakia, Europe

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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bestadmom
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Post by bestadmom »

Hi Erikja,

If I could dance, I'd be dancing for you!!!! You are a lucky girl but you made this happen for yourself because you will not stop until you get the answers.

I'm happy for you.

Michelle
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CNClear
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Post by CNClear »

Erika, I am so happy for you! You are really doing a terrific job! (It's good that you dont have to pay, but it is too bad that you cant GET paid for all the work you're doing!

I think you're wonderful!!

Dancing here in Atlanta!!

Lisa aka CNClear
ErikaSlovakia
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Post by ErikaSlovakia »

Rokkit wrote:All I can say is wow, this is incredible. I guess now I'm getting very curious as to whether or not Dr Simka starts seeing azygous issues.
This is important - I mean azygous. When I visited Dr. Simka first time - in August, I asked him before the Doppler if my azygous is OK. After the test he told me I did not have any stenoses in my azygous for sure. I do not know how he knows.
I had problems with my bladder only during 2 attacks (I had about 12 attacks together) I always feel I need to go..It lasts about 3-4 months - I must go 16 times per day. I had little accidents only couple of times because I could not run fast enough to the bathroom. Right now I am fine. I just need to push my belly to empty my bladder completelly. I use one cane for walking. But in our house I walk without the cane.
I hope he will see it during the phlebography.

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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Post by ErikaSlovakia »

bestadmom wrote:Hi Erikja,

If I could dance, I'd be dancing for you!!!! You are a lucky girl but you made this happen for yourself because you will not stop until you get the answers.

I'm happy for you.

Michelle
Well, I can not dance physicly, but my soul was dancing and jumping a lot.
You are right. I do not stop until I get the answer.
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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Post by ErikaSlovakia »

CNClear wrote:Erika, I am so happy for you! You are really doing a terrific job! (It's good that you dont have to pay, but it is too bad that you cant GET paid for all the work you're doing!

I think you're wonderful!!

Dancing here in Atlanta!!

Lisa aka CNClear
I get paid, it is not money, but I get.
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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Post by ErikaSlovakia »

October 27 is day of my surgery in Katowice! :D :D :D :D :D :D :D :

I do not know how long I will stay in the hospital. I do no know what kind of procedure will Dr. Simka do.
As I trust him completely I do not care to be honest. He will do the phlebography and then he will decide the best solution for sure.
I do not care if I have more or less lesions after or before.
I JUST WANT TO FEEL BETTER!
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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Post by ErikaSlovakia »

Well, I will have to cancel and forget whole thing.
Doctors in Slovakia are not able or can not to fill in the stupid application for my health insurance company.
I go to see my GP tomorrow for the third time. If she tells me again she does not know what to do I just will forget it and good bye.
Of course I will inform you tomorrow. At least you will know what country I live in. :(
I am almost not able to walk anymore from so much action for nothing.
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
LR1234
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Post by LR1234 »

Don't give up Erika. I am in the same situation as you in the UK.
Until the theory of CCSVI becomes really public I think it will be difficult to get treated in our own countries or to get the dr's from our countries to help. I am still planning on trying to go to Poland.
ErikaSlovakia
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Post by ErikaSlovakia »

LR1234 wrote:Don't give up Erika. I am in the same situation as you in the UK.
Until the theory of CCSVI becomes really public I think it will be difficult to get treated in our own countries or to get the dr's from our countries to help. I am still planning on trying to go to Poland.
You are right,but I was not even dreaming about having the treatment in my country. I only wanted really simple thing from ONE doctor - to fill in the stupid papers to have the treatment abroad. NOBODY has even tried it!
I want and I can have the treatment in Poland in 22 days. But doctors at slovak health insurance company are....I do not have any word for that not even dirty one.
I must give up! There is nothing I can do about it anymore.
For sure I will go to ask my GP tomorrow for the third time. I do not expect any change from last time.
I do not want to bring negative energy to this excellent forum, so slowly I am saying good bye.
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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whyRwehere
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Post by whyRwehere »

That doesn't sound like you at all, Erika. Have you thought of blackmail? (I am just kidding, for those of you who don't have a sense of humour!)
Keep on truckin'
LR1234
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Post by LR1234 »

I don't know what to say Erika, I know how hard you have tried.
Its so frustrating to have to get a dr to agree to something when it is your body.
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bestadmom
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Post by bestadmom »

Erika,

Don't give up. You've gotten too far. I would not leave that doctor's office until he gives me what I need. Is he lazy or disagrees with the procedure. If he's lazy, you should make him feel bad about how disabled you are yet you keep working so hard to get what you need. He has no excuse.

Michelle
ErikaSlovakia
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Post by ErikaSlovakia »

bestadmom wrote: I would not leave that doctor's office until he gives me what I need. Is he lazy or disagrees with the procedure. If he's lazy, you should make him feel bad about how disabled you are yet you keep working so hard to get what you need. He has no excuse.

Michelle
Hi Michelle,
MGP is not lazy, my GP agrees with the procedure, but she does not speak English, she does not use e-mail, she does not use the internet. She wants to help me to fill in the application for the lazy doctors from the health insurance but she is not an angiologist. She told me 5 weeks ago to see somebody in the capital - in Bratislava. You know I made many trips. But now the health insurance company says it must be my local doctor. GP, neurologist or angiologist. The neurologist told me and she was right she can not advice me to go for operation of veins because she does not know much about veins. I went to see a surgeon who also treats veins. He does not not what to do at all. He told me to go to the capital - Bratislava to find an angiologist. I found her but she can not do that because I live in different region of Slovakia. The health insurance company does not want me to enter that part of building where the doctors are. They sent me an e-mail to go to see my GP. My GP is nice older lady, but she has her limits.
I am not able to teach her English in 10 minutes and to teach her to be an angiologist.
I must give up. It is the only possibility. This is Slovak reality.
Doctors are to busy even I have an appointment. The hospital in my town has been without hot water for 5 months. They have other problems. I just disturb them.
I feel much worse then a week ago. I hardly walk, I hardly type this words. Do not be upset. Just do not move here!
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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bestadmom
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Post by bestadmom »

Erika,

Maybe Dr.Simka can help to translate for your GP? I understand how basic human needs of hot water can focus everyone's attention away from personal medical needs.

Although our basic needs are met, we have different regions here too for imsurance, and for that reason I can't see Dr.Dake unless I am willing to pay myself.

I am praying for a miracle for you. I think and hope your story is not over yet.

Michelle
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mrhodes40
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Post by mrhodes40 »

:cry: :cry: :cry: :cry: :cry: :cry:

Oh Erika! I am so sorry! this cannot go fast enough for us. Really let us be honest: ONLY Dr Dake is jumping in out of the whole world. Dr Zamboni is treating but only his research subjects. IT is only Dr Dake out of the whole planet who says "this is a vein probelm and it is my job to fix vein problems so I will fix it" Really everyone else is in this same place as you. Get your rest and recover... be at peace as this will go faster all the time inmonths it will be more available I am hoping as people see Dr Dake being out front they feel secure to go ahead themselves too, and as more do it it gets more easy for others.

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'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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