Personal story about liberation procedure.

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

Personal story about liberation procedure.

Postby Ewalala » Wed Jan 20, 2010 9:18 am

i had the liberation procedure done in Poland on the 5th of January 2010.
The results are absolutely amazing and some of them happaned pretty uch right after the procedure. i also do continue to improve on daily bases. My husband tells me that he has goten his wife back. I feel like a reborn being who might in time forget about MS altogether.
Should anyone be interested to hear details about the procedure and my specific improvments pls contact me at tillmann.e@gmail.com.

i had a Doppler test as well as MRI. in that order.
procedure lasted 1.30 hours, and it is done with Local anesthesia. You are aware at all times during the treatment. It does not hurt at all.
i paid 16500 pln. costs vary depending on the number of stents, and stents vs. ballooning.

i started feeling better immediately after the treatment.
i have up t date so many improvements that the list is rather long :-)
first time since 3 years i feel like i am in one piece. Functioning on one level of awareness.
OK here are the major changes:
1. warm hands and feet (they were icy at all times before)
2. No pins and needles in my left hand. (i used to have them from the on set of MS, effected are was from elbow to the tips of my fingers, it effected the speed of my typing, my left hand has been very clumsy. Now it is back to normal :-)
3. No pain at all. i had pain in my right pathway. right hand, up to my head. several places at the same time, it s been unbearable, burning, also feeling as if knives were cutting trough my skin. etc..
it has been almost chronic in the last few months.
4. Greatly improved vision. I go to the whole foods store now and dont loose my eyesight at all. before after ten min, i would get so blurried i would not see people faces and could not read any product info.
5. Stronger walking better balance.
6. numerous other small improvements. which i keep noticing on daily bases,
Poland is the only country that allows MS patients to recieve the treatment.
I had the procedure done in Katowice Sielsia, Poland. As you know the little clinic there is already over its capacity till end of 2011.
There will be one more clinic in Warsaw openning as far as know end of Feb and early April.
They are already open for booking procedures.
i would recommend not to wait and contact them.
here is the contact to the new clinic in Warsaw:
http://ameds.pl/
ms@ameds.pl
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Postby ozarkcanoer » Wed Jan 20, 2010 9:29 am

Ewalala,

I am ecstatic for you, that you have experienced so much relief from your symptoms so quickly after the procedure !! Thanks for coming to TIMS and telling us about it. It is always good news when we hear about positive results because it gives the rest of us who are "procedureless" a lot of hope.

Would you tell us what sorts of venous malformations you have/had ?

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Postby Ewalala » Wed Jan 20, 2010 9:50 am

You are very welcomed.
i join the forum, since i wanted to share my experience with the CCSVI. i know that many are talking about it and wondering whether it actually does work. That there is a lot of hope out there and waiting for tests results.

i have decided that Prof. Zambonni theory has made a lot of sense to me from the first time i have heard and read about it.
That was enough to act.
i dont think i had the luxery to wait for the Buffalo research results.
and so far i have been liberated and that feels amazing. as if i was reborn again.
My husband tells me his wife is back.
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Postby ComfortablyNumb » Wed Jan 20, 2010 9:53 am

Ewalala,

Great news! I am so happy for you :D :D .
My MS symptoms sound very similar to yours. I am waiting for my liberation in May, and your news is wonderful to all of us who are waiting.

I was wondering which side your blockages were on and where stents were placed.

I hope the imprvements keep coming for you.
Keep updating us please.

Steve

[/b]
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Postby Ewalala » Wed Jan 20, 2010 9:59 am

I had blockages on both sides.
Left one pretty bad. Blood was literally trickling only on the sides of the veins.
Here i had two stents implanted.
Right vein was also narrowed but not so terribbly. and it was opened by the air balloon.
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Postby Asia » Wed Jan 20, 2010 10:00 am

Beware of the ameds clinic. There was discussion on another, Polish forum and people suspected it to be scum.
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Postby Ewalala » Wed Jan 20, 2010 10:09 am

ameds is a part of a large hospital in Warsaw. Hardly a scrum.

here is the information i recieved from them re the procedure.
Initial estimates indicate that the full treatment covering examinations (MRI, Doppler, etc), consultations, diagnostic, and subsequent treatment along with all costs associated with patient stay at the medical facility should be available in the price range between US$6500 and US$7900 per patient.
For international patients arriving to Warsaw (by plane) we are planning a full coverage in terms of logistics – pick up from the airport, transportation by dedicated Van to the medical center, presence of the English speaking professionals who will look after the patient from the moment he or she steps out of the plane to the moment they depart from Warsaw. This service will be included in the package at no additional cost. Since the selected medical facility has also a medical hotel adjacent to the main building, there will be a possibility to accommodate family members traveling with the patient at additional cost which most likely will not exceed US$150 - $200 per day of stay.

Typical stay for the patient arriving from the US or Canada would look as follows:
Day one:
Arrival at Warsaw Airport (usually early in the morning)
Transportation to the medical facility (should not take longer than two hours from the time of arrivals)
Arrival to the medical facility (around noon)
Lunch
Rest for the remaining time (due to long plane travel and time difference most patients with MS will be very tired)
Day two:
Medical login (filling up the forms, signing the agreements, formal procedures)
Preparations for the medical examination
Rest
Day three:
Medical examinations – in some cases this can take two days
Day four:
Break
Day five:
Surgical procedure
Day six:
Rest and monitoring
Say seven:
Transportation to the airport (early in the morning)
Departure.
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Postby ComfortablyNumb » Wed Jan 20, 2010 10:34 am

Thanks for all the details Edwalala.

All these posts are great information for us in waiting. I just keep on copy & pasting all this good info.

Steve :D
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Postby whyRwehere » Wed Jan 20, 2010 10:40 am

I don't know this seems a bit like a hard sell to me.
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Postby Asia » Wed Jan 20, 2010 10:41 am

If it is truth, and I don't say it isn't, then they have a really lousy web page that doesn't seem professional so just be careful people.
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Postby LR1234 » Wed Jan 20, 2010 11:37 am

Always suspicious of new people coming on recommending a procedure elsewhere. I would recommend waiting for Dr Ludgya, he is a fantastic surgeon and a known quantity. Him and Dr Simka are a great team.
Last edited by LR1234 on Wed Jan 20, 2010 12:24 pm, edited 1 time in total.
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Postby Zeureka » Wed Jan 20, 2010 12:19 pm

Ewalala this is great news,

What you are telling us gives us big hope! And I am really happy for you and your husband. Our exhaustion is often something that our family has to suffer with us.

Simka only diagnosed me 1 jugular vein obstruction via doppler so far (so not as many blockages as you) - I had no MRV yet, but if there could be a chance that my constant pins and needles in both hands and feet could improve, and/or maybe the common fatigue, that would be fantastic!

I have asked Simka yesterday when was there for the doppler if the pins/needles issue could be a circulatory problem, and he denied. He said is clearly a neurological issue. However, he said that neurological symptoms could on the other hand potentially improve if an obstructed blood circulation is improved. Maybe neurotransmitters or other could play a role, but only a potential explanation and further research on this needed...he really was very modest and careful in his answer.

He is rightly convinced about the link of CCSVI and MS, since found it in 95% of MS cases (as others like Zamboni). What I admired that he admits also not to know all the answers. He just wants to help people and also hopes that by doing the intervention we can improve! The reason is not so important for the individual person who feels better! And he knows this and is monitoring the improvements with big curiosity and hope as well.

Ewalala, thank you so much for reporting and keep updating us how you feel! I am really so happy to hear that finally there is something without side-effects that can help to improve some symptoms for MS + maybe prevent more!

I'm still waiting for my turn... but waiting after knowing my doppler now and hearing your positive experiences already seems much easier. I am already very happy for all of you that got the treatment and feel better!

Steffi
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Postby ozarkcanoer » Wed Jan 20, 2010 12:25 pm

I am doubting that this new Liberation site is real too. Someone should check with Dr Simka before doing ANYTHING anywhere else. This could be a scam. We've seen other scams here and on the CCSVI Facebook page. Be careful everyone !!!!!

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Postby Zeureka » Wed Jan 20, 2010 12:37 pm

Fully agree. And for sure do not pay anything before you have not checked it out... :roll: There are 8) honest and modest doctors, but unfortunately if they smell the opportunity there may also be fake ones :twisted:
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Hospital name?

Postby prairie » Wed Jan 20, 2010 1:13 pm

Ewalala, what is the name and city of the hospital please?
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