Personal story about liberation procedure.

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

Hi again,

no offense taken.

Joan just explained to me the reasons for it. which i fully understand.

i will post my history tomorrow.
Thank you guys for the welcome.
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cheerleader
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Post by cheerleader »

Hey Guys...
No worries! I just checked this thread and realized it was our friend. Eva's husband contacted Jeff, since they know each other in the music world. Eva is a lovely gal, born in Poland. We just got off the phone...she explained that she had the procedure in Katowice, and went to see friends in Warsaw where she developed a sore throat/fever. Her friends took her to the clinic she mentions outside of Warsaw, where the docs there knew about Simka and were very interested. They did a doppler of her veins, saw the blood flow, and treated her for sore throat/fever. She was fine. THis is where she learned that they were setting up a clinic to do the liberation procedure and are consulting with Dr. Zamboni. I'm not sure they are ready to go yet, but Eva said the doctors were very interested, had the technology and were learning the skills. They should be up and running, and will be another location for people to check out.

I explained how we're all a bit nervous about scammers and people taking advantage of MS patients...since the internet is anonymous. She completely understood. She'll be doing the tracking thread tomorrow. She sounds terrific! Energized and happy to be feeling so good.
:lol:
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Bear2
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Post by Bear2 »

Ewalala,

Great news! I'm so happy to hear someone from the US got treated in Poland. I have only 1 question - How are you taking blood thinners? Mostly since you had stents in Poland and you will need to take blood thinners. Who is writing the scrip and doing the follow up care?

There is such a problem getting docs is the US to even look for CCSVI. I would think it would be very difficult to find a doc to do follow up care, drugs and testing. I know that in Poland they use an injectable drug for blood thinning but in us it would be other drugs.

Jim
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jak7ham9
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so happy real

Post by jak7ham9 »

I can not explain how saddened I was when everyone attacked and said fake. I am delighted that you and you experience are real. May your improvements continue! My feet are so cold right now my envy at your warm toes is high! Barbara
jr5646
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Post by jr5646 »

Thanks Joan for clarifying... and thank you Eva for passing along the info., I'm glad to hear you are getting some amazing relief and hope for your continued improvement. It is so uplifting to hear positive news...

On a whim, I sent an e-mail requesting more information this afternoon and heard back already.. I missed my shot at Stanford, so I figured I'd jump on this lead asap as I can't wait any longer.

Anyway, they are in the process of final preparations for providing the CCSVI examinations (Doppler, MRI) and subsequent surgical treatment, which will be conducted by the team of experienced medical specialists in Poland, working in one of the most modern hospitals near Warsaw. I don't know yet if they will do stents, angio or a combo.?

I'm trying to confirm the hospital information also, and hope to hear back from them soon. I also asked if they were ok if posted any correspondance here.. Hopefully they'll agree. They are anticipating the first patients will be admitted for medical examinations and subsequent surgical treatments anytime between March 1st and April 1st. They are finalizing all formal arrangements with the hospital in question, making sure that the quality of services meets top international standards.

At the moment they cannot set up appointments as they we do not know an exact date when services will become available. However, they assured me that as soon as the situation changes, they will contact me.

I'll let you all know when and if I hear anything. Get your passports ready. :D


Bear2> Great questions.. some docs don't want to touch you if you were treated by another... I can only hope my gp would work with whomever I see.

John
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Post by AlmostClever »

Congrats Ewalala! That's really incredible!

And I don't think you guys should feel bad at all for wanting to confirm her story. Just imagine what kind of CCSVI credibility would be lost if 6 months down the road she was exposed as a fraud!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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JoyIsMyStrength
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Post by JoyIsMyStrength »

Once again congratulations, my wishes were most sincere. What you said is fair enough; we can always write to the clinic if we have questions. I was just so hoping you or someone here knew the name of their hospital affiliation in Warsaw so I or anyone else could do our own research. The website has this info:
Treatments will begin as soon as possible with the use of top-class professionals working in one of the most modern hospitals in Poland.
But why they don't mention which hospital is a mystery. Of course that's not your fault, just curious. I hope you can understand. We are all so anxious to get this procedure! :)

Anyway I'm looking forward to following your excellent progress.

Pam
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seanthecaper
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HEARD BACK FROM DR. LUDYGA TODAY JAN 20

Post by seanthecaper »

I heard back from an email that I sent in December to Dr. Ludyga regarding an appointment for Doppler Ultrasound and MRV. I was told there were new facilities which would shorten the waiting time. This confirms what others on this thread were saying in regard to another facility opening up soon.

I finally got a response, albeit late in the game, but nonethless I am on the list. I'm curious as to when I will hear back from him - hopefully within the next couple of months.javascript:emoticon(':)')

Here was his reply from my email:

Re: Color Duplex Doppler Ultrasound and MRV Requisition
From: t.ludyga@poczta.fm
Sent: January 20, 2010 5:22:58 AM
To: Sean McNeil (sean4mcneil@hotmail.com)


Dear Sir,

We will be happy to help you and put you on the waiting list. The list is long, therefore we're not able to set a certain date for you. However we're in the process of opening new diagnostic and surgery facilities, so the waiting time should shorten. We will contact you regarding the date as soon as possible.

Due to increased prices of insurance, we will send you appropriate information on current prices soon.

First the patient undergoes Doppler ultrasound examination at EuroMedic in Katowice as well as MRI. On the basis of the examination results (if the CCSVI is present) you may be qualified for angioplasty using balloon or we do stent implantation in the place of stenosis. Surgeries are also performed in Katowice.

Shall you require any further information, please do not hesitate to contact us.

Best regards,

Tomasz Ludyga

Director of EuroMedic Specialistic Clinics

===============================================
"Sean McNeil" <sean4mcneil@hotmail.com> pisze:

Hello Dr. Ludyga:

I would like to submit my name for the waiting list for the Color Duplex Doppler Ultrasound of the Jugular Veins and MRV of the Jugular and Azygous veins.
If there is an application process that is involved I would be more than happy to fill out the necessary medical paperwork and have it requisitioned by my General Practitioner.
I understand that if stenosis is found you are also preparing your medical facility for the liberation procedure. Is this correct?
I received your information from a friend who has been in contact with your clinic, requested the same information, and has heard back from you.
My name is Sean McNeil, a 38 year old male from Nova Scotia, Canada who was diagnosed with RRMS in October 2005. I have been on Rebif from 2005 to 2007 then switched to Copaxone in 2007 until current. I have had an MRI done in March 2009 which tells of my most current status with MS lesion progression and current EDSS score of 2.5.
I'm a patient of the Dalhousie University MS Research Clinic in Halifax, Nova Scotia, under the direction of neurologist Dr. Virender Bhan, nurse practitioner Trudy Campbell.
I was diagnosed with RRMS (2005), and have had a relapse since diagnosis, with optic neuritis in both eyes( 2005 and in 2007).
I have had the following MRI, a brain EH with 6 Pul Seq-NE,Injection MR, performed on February 3, 2009 at St. Martha's Regional Hospital In Antigonish, Nova Scotia, Canada. The findings were consistent with multiple sclerosis.
The test was performed by Michael E. Silver, MD, FRCPC. The report number was 0302-0461, requisition number was 09-0017201, site number was ST00119889, and the contact number for the test site is (902) 863 2830.
I am prepared to incur any expenses associated with travel and accommodation to get the surgical procedure in Poland. I have received Dr. Simka's pricing list for the various procedures. I am seeking information regarding what request forms are needed as well as approvals in order for me to get on board for testing and possibly subsequent surgery.
I can be contacted at sean4mcneil@hotmail.com and by telephone at (my tel).
I look forward to hearing from you at your earliest convenience.

Sincerely,

Sean McNeil
----------------------------------------------------------------------
Codziennie 11 tys. ofert pracy
Sprawdz >>> http://link.interia.pl/f2579 :)
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edi
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Post by edi »

hallo Ewa! I's nice to hear you are right and happy after the liberation.
I can confirm your presens in euromedic on 6th January. You were after the procedure, and my wife was waiting for acceptance on department. Maybe she took your bed ; )
You are very handsome women (like most polish girls : ) ), blonde, with very elegance, old-fashioned cane. Your husband was there too, wearing a hat.
Very nice couple!
My wife was op. o 6th, with miraculous results too. Her vision problem, fatigue, neuro bladder, balance, vertigo, etc. is almost gone!
I describe my wife story in greymen thread. I think, greymen, can confirm your presens there too.
best wishes! edi
trzymaj sie cieplo! edi.
Last edited by edi on Wed Jan 20, 2010 11:26 pm, edited 1 time in total.
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greyman
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Post by greyman »

Yes, I confirm ;).
Ewa, if your husband's name's Richard, I spoke with him in the corridor right after your procedure.
Br,
Adam
Last edited by greyman on Thu Jan 21, 2010 12:29 am, edited 3 times in total.
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costumenastional
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Post by costumenastional »

Thank you for posting and i wish you my best. It's sure is great to have another place to wait ccsvi tests from.
If i may, personally i don't care about how the web page look. I already contacted them as i honestly dont believe that there are hospitals that would operate on people just for the money even if no problem exists.
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thisisalex
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Post by thisisalex »

OK so there is the old group with dr. Simka and dr Ludyga, and there is this new place Ewa talked about. Do they have a common administration? I mean a common waiting list... or they are completely separated? I ask this because dr Ludyga talks about a new facility in his email above...
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greyman
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Post by greyman »

thisisalex wrote:OK so there is the old group with dr. Simka and dr Ludyga, and there is this new place Ewa talked about. Do they have a common administration? I mean a common waiting list... or they are completely separated? I ask this because dr Ludyga talks about a new facility in his email above...
This new one (ameds) is something strange. To me it seems like a hoax. Be careful y'all!
Adam
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thisisalex
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Post by thisisalex »

greyman wrote: This new one (ameds) is something strange. To me it seems like a hoax. Be careful y'all!
Adam
read the previous part of this thread... it looks like its not a hoax
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ComfortablyNumb
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Re: HEARD BACK FROM DR. LUDYGA TODAY JAN 20

Post by ComfortablyNumb »

Hi All,

I am glad the waiting list will be getting shorter. There are so many of us wanting this procedure.
Due to increased prices of insurance, we will send you appropriate information on current prices soon.
Does this mean the prices are going to be increased?? 8O

Oh well.

Steve
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