Personal story about liberation procedure.

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

Ewalala that is amazing and wonderful, congratulations!

I appreciate the info on ameds and this is not intended to "shoot the messenger." I am simply looking for answers and being careful. Thank you for understanding.

Unfortunately, a search on Google for "Poland Ameds CCSVI" (without the quotes) turned up two things: a post from someone with your email address (I assume you wrote it) elsewhere offering the same link to ameds.pl, and this very message thread.

A visit to the ameds.pl website was unimpressive and there's no way to tell if they are legit. No offense but I can see why people would think it's a scam as my first impression is that they are setting up shop just to do this procedure. I would expect for them to be linked to the large hospital in Warsaw you mentioned. Do you happen to know the name of it?

After emailing two places in Poland recommended here and receiving no answer I am so wishing for an answer somewhere. By the time these other well-known CCSVI centers have spots available I may as well wait for the US to be ready. I don't wish to gamble with this, though.

Asia, can you tell us what was said on the other Polish forum?

Thanks,
Pam
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Acheron
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Post by Acheron »

Perhaps I am becoming too suspicious, but it seems she is trying to sell something here. I hope to be wrong, because it is very sad to try to take advantage of other people's suffering.
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Ewalala
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Post by Ewalala »

i live in California, Santa Monica.
all i wanted is to share my story.
and give info about other options.
you can email dr. simka from katowice if Eva Tillmann has been one of the pateints receiving the treatment on the 5th of January.
<mariansimka@poczta.onet.pl>,
good luch to all the skeptics.

i have done my sharing info part. You know all there is to know now. my story is a success and that matters.
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Ewalala
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Post by Ewalala »

one more thing.
if you guys need more information about the clinic pls, write directly to them.
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Zeureka
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Post by Zeureka »

Hi Ewalwa!

I'm sure nobody was skeptical about you and Simka. On the contrary: Your report is more than encouraging!

It's just that there has been recently a guy in Canada that wanted to sell earlier procedures, so now we are always double careful. Indeed hospitals might now at a higher price offer the doppler and procedure - and it needs just to be checked out if they are serious before one pays sthg.

Wish you a nice lunch and please keep us updated on how you feel in the coming weeks or months! Thank you so much for your post and help to others with this!

Steffi
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Ewalala
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Post by Ewalala »

of course i will keep you all informed.

i have so far written a to date summery of my experience with liberation treatment.
now, i will post new updates whenever i notce a new improvement or set back.
Although set-backs are not an option.
but just to summerize. all of moine symptoms has disappeared. as mentioned in the earlier post.
apart of walking: i can walk about 30 minutes long. still can not run or play tennis as i used to.
my lesion in Cspine is about 1.5 cm long, it remain to be seen iif it can heal.

also my optic nerve has been attact at some point during my struggle with MS and although my vission did improve and the blurriness occures after longer periods, this symptom is still with me. again it remains to be seen if optic nerve can repair itself when the high resides of iron are flushed out by proper circulation. At the same time i am writting here with font 8! and still seeing it all. so perhaps there is been some improvement.

i am hoping to be wearing my heel heals soon :-)
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Sharon
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Post by Sharon »

Hmm, I am questioning the story. Having had the stent procedure at Stanford, I know that when they pressurize the stents it hurts like h*ll! I think there would be other Stanford stenters who would agree with me.

Sharon
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Ewalala
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Post by Ewalala »

Ok of course you are right.

i did hurt during that time: to be precise behind the ear, and in the vein itself. and it did took me about a week to get used to the stents.I also had to give myself injections in the stomach. I think untiflamatory. but i is nothing to comparewith my MS pains. and i did not think that it was important to talk about this sort of little pain. t is nothing compare to benefits. and i wanted the procedure done so badly that i really did not mind. when i was wheeled out of the operation room i saw my husband and i told him with a big smile that it was my best surgery ever!
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Sharon
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Post by Sharon »

Ewalala -

Okay - you are correct - the pain is right behind the ear. Who was the doctor performing the surgery? Maybe you should link some information about him.
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Ewalala
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Post by Ewalala »

dr. Ludyga.
i dont know any additional inf. or links about him. sorry. he was just the surgion that performed CCSVI on me.
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cheerleader
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Post by cheerleader »

Eva...is this you? It's Joan. If this is Eva T, I can vouch for her story. Call me Eva, and maybe we can clear this up...I want to hear how you are doing!!!! Sorry for the weird greeting to this site. People are nervous about getting cheated.
(Guys, Jeff and I know Eva and her husband- he's a fabulous musician, and he checked in with Jeff when he heard about his CCSVI procedure. She is Polish born and they live here in socal. We spoke before they went over. Let's give her the benefit of the doubt)
Joan/cheer
Last edited by cheerleader on Wed Jan 20, 2010 3:41 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Ewalala
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Post by Ewalala »

hello,
yes it is me, happy and liberated.
i will call you right away.
i am so glad you are coming to my rescue.
it has been really hot out here. i have never done forums or blogs before.
i have begun to feel like a judgment day.
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Sharon
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Post by Sharon »

Welcome Ewalala!!

Sorry for the hesitation and the less than warm response you were getting from the TIMS members. Please accept my apology.

Would you post your experience on the tracking thread? Here is the link
http://www.thisisms.com/ftopict-8346.html You will need to go to page 3 or 4. Ask Joan about it when you speak with her -- she will tell you all about it.

Again, Welcome and please keep us updated of your progress. Sounds like you are feeling like a new person.

Sharon
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ozarkcanoer
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Post by ozarkcanoer »

Ewalala,

I am sorry that I doubted you. Please forgive me. I truly am glad for you.

:oops: :oops:

ozarkcanoer
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Acheron
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Post by Acheron »

Sorry Eva, and congratulations on your improvements!
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