Jacek Kosteki

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

Hi Trine

The cost when I went was 14000pln which is about 3500 euros. But I don't know whether it has gone up or not. Exchange rates have changed a fair bit in the last few weeks.
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BrendaReqier
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Post by BrendaReqier »

ok another couple of questions. I spoke with kate today and she suggested printing, filling out and then faxing the forms back.
Second, they keep saying MRI, but it's an MRV is it not? an MRI is just for tissue, where MRV is for veins.
I also have calls into my current OBGYN about fallopian tube clips, as far as I know they are surgical titanium and silicon and I have had 4 other MRI's with no issue at all, but they want to be sure. Trouble is they have been there for 25 years and so information is almost non existant.
So, now I'm seriously worried, I have the trip all set up with airmiles and paid for. I am so tired and pain level is high when I get tired. None of the doctors here are supportive of CCSVI treatments at all it's rediculous. to them it's all 'anecdotal' so frustrating.
If anyone else has fallopian clips could you message me? also if it's an MRV or MRI? all I know is Kate said it's a T 1.5 and they were going to do the test in Vancouver with a T3 which is much stronger, they didn't think it would be a problem. oh ya, and you liberati, send me some energy please LOL
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AMcG
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Post by AMcG »

Hi Brenda

I can't comment on fallopian clips but MRI is the name of the machine/procedure. In this case MRV and MRI means the same thing.
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BrendaReqier
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Post by BrendaReqier »

ty for answering me :) I just re read my last MRI report and they used a T2 (not quite 2 years ago) and I had no problem. Kate said they use a T 1.5. also my OBGYN called me to say the marina IUD is plastic and not an issue, as well she said she's never heard of a problem with fallopian clips, and that we absolutely would have heard of a problem by now if there were one. She said that it would affect so many women, so she said not to even worry about it. phew...now to destress and get stronger before I go to make the best of it! Thanks again, if anyone else has some thoughts or experiences on the clips just let me know :)
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ndwannabe
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Post by ndwannabe »

Thank you very much for sharing! Everything - the improvements, the details, the needs and what we might need, this helps tremendously.

I am wishing ALL liberated to continue the improvements !

I guess, one thing is on everybody's mind (the ones that are about to go that is) - is there any recent or not so recent medical data that we are required to bring with us? Like - recent MRI's, Dopplers, or not at all?

I was under impression that all the necessary testing and assessment is done right there in Tychy. Is that correct?

Also (not any less important :lol:), night gowns, NOT pajamas? (I assume the latter would not be allowed?).

What about slippers?
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vivavie
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Post by vivavie »

answers to last Q: after the first 6hrs just wear what you are the most comfortable in. I had pj, change the top just after procedure (hospital gown friskee) and bottom 6hrs later after the bandage was removed. (slippers + socks naturally)

They do all the testing over there, I had brought with me a one sheet summary of my health history, symptoms and medications. It was appreciated.

Don't bother with anything else, I was ready and had my last MRI and other tests results but they could not care less...

Wish I was going back, good luck!
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hale
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Post by hale »

Hi Trine,

This is what I got from Dr. K in terms of pricing:

MRI + doppler + neurologist + phelobography -----> 11000 pln
Angioplasty if required -----> + 2000 pln
Stents if required -----> + 1000 pln/stent


Hale
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1_sindy
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Post by 1_sindy »

Can any one tell me what they needed to do for follow up when back from the treatment .
How did your DR recive you when you told them you have had the treatment and where they willing to look after you now.
Thanks for all the info.
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Billmeik
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Post by Billmeik »

so it looks like my wife who is a gp will be going with me for june 8.
Is there background or a web page on the docs anywhere?
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Daisy3
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Post by Daisy3 »

Billmeik wrote:so it looks like my wife who is a gp will be going with me for june 8.
Is there background or a web page on the docs anywhere?
Your wife is a GP? What does she make of CCSVI?
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Billmeik
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Post by Billmeik »

she listens to me rant about it and fixes my arguments when they're stupid. Now she knows less about it than me since I'm obsessed.

Poland in springtime sounds like a nice trip!

She hasnt worked in this millenium she's been a full time mom to my kids.

She is trained to be pretty skeptical but she buys the argument that liberation is justified just in case it helps. As long as it does no harm.

I dont think shes into stents though...
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caraboo
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Post by caraboo »

Hi all,


I dont know if anyone can help, but can you stay on medication while having the procedure? Also can you request that you have stents if ccsvi is found?
The reason being , probably like everyone here, I took out a bank loan to fund my trip and i know your health comes first but I cant really afford to pay it again if I was to get blocked again, that being that i am blocked. I hope that i am.


Many thanks
Caraboo
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AMcG
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Post by AMcG »

Hi Carabou

I think you can carry on with most meds but you need to tell the Dr what you are taking before the procedure. They will tell you what to do.

I had a discussion with Dr Kostecki about stents before the procedure. He said they always try ballooning three times first. He then said they would not put a stent in if you did not need it and would not put a stent in if you did not want it. He also said they would not put a stent in a dangerous place even if you asked them. I think you need to have a similar discussion. In the end, of course you have to make your own decision. I was the opposite to you. I was scared of stents, but I decided to have one as the ballooning failed on my right side.

Good luck making your decision.

Alan
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caraboo
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Post by caraboo »

Hi Alan,


Thankyou so much for all the help you have given me. Your are one really kind man.


Take care
Karen
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Billmeik
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Post by Billmeik »

here's a question

After the operation I was thinking of going and visiting a friend in Prague.

I shoot spherical video
http://www.vrhotwires.com/spherical.html


I mean some of the stuff he has planned like a shot from a balloon over the city might put some strain on stitches.
www.360cities.net/image/prague-from-a-balloon


My wife thinks I should go home and do nothing for a couple of weeks but I wanna get some shots.

Fairly sure Im angio only wadja think?
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