Mutley goes to Poland, and returns home liberated.

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

Postby xia » Thu Feb 04, 2010 3:34 am

Good advice from all, thanks! :D
Thats whats great about this forum!!!
xia
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Re: Notice

Postby Zeureka » Sat Feb 06, 2010 3:42 pm

xia wrote:
fiddler wrote:Hi Marsha,
Euromedic Poland [info@euromedicpoland.com]. That is the new contact point for Dr. Simka's patients and I assume that she (Alicja Ossolinska) will be able to answer your questions.
...Ted

We kindly ask you to pay the full price of the treatment together with the
logistics package (treatment, accommodation and transport - 6.900 euro in
total) via bank transfer at least 21 days before the day of your arrival.
You will be given the account number and all the necessary details in the
nearest future."


Huh! Never heard Simka asked for payment of it all beforehand! Great you all watched this+did research immediately...I can't believe it !! Best indeed to ask Simka for clarifications via an email address that you're sure it's him! He is indeed tomorrow in the Haacke workshop with Zamboni and should be back in Poland (facing overflooded e-mail box) next week.

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Postby Zeureka » Sat Feb 06, 2010 3:59 pm

Hope noone else got payment details and paid yet...it instinctively smells like the Canada hoax recently to me... an e-mail address euromedicpoland.com - why should they suddenly use that new address without the linking web-site being ready?

The internet web-site www.euromedicpoland.com is "under construction"... the owner could be anyone...
Anyway, best to ask Simka for clarifications.
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Re: Notice

Postby Zeureka » Sat Feb 06, 2010 4:17 pm

fiddler wrote:Hi Marsha,
If you are looking for assurance, contact the Patient Coordinator, Euromedic Poland [info@euromedicpoland.com]. That is the new contact point for Dr. Simka's patients and I assume that she (Alicja Ossolinska) will be able to answer your questions.
...Ted

Hi Ted, just curious: where did you get that new e-mail address for Alicja from?
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Patient Coordinator E-mail address

Postby fiddler » Sat Feb 06, 2010 9:44 pm

Zeureka, I received this e-mail address directly from Dr. Simka.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Robnl » Sun Feb 07, 2010 3:00 am

Hi all,

The prepayments are true, it's because of 2 things:
1. The included hotel has to be paid
2. Some treated people did not pay afterwards.

Regards,

Robert
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Postby dudkova » Fri Feb 12, 2010 10:21 am

Hi,

have any of you written to the new dr Simka's address (info@euromedic...) recently? I have been waiting for the reply for a week now. I remember people writting they got the reply after 2-3 hours, maybe a day.

I want to make sure whether they do not get my emails/ or whether they ignore them for some reason.

thank you in advance

Natalia
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Postby xia » Fri Feb 12, 2010 10:31 am

Yes, this was their reply...
"We kindly inform you that due to increased costs of medical insurance and costs of clinical researches, we have to change the price of Liberation Treatment (CCSVI) method. New price also includes transportation and part of accommodation costs during your stay in Poland. We have decided to cover non-medical areas with our assistance to increase performance of the Clinic and to shorten the waiting time for the procedure."

Since 25th January 2010 the costs will amount to:
- 6 900 euro : angioplasty with stenting – 1 stent (if more than one stent is placed, each additional stent costs 500 euro)
- 6 400 euro : angioplasty

The price includes:
- Vascular surgeon/angiologist consultation
- Color Doppler ultrasound examination
- MRI examination
- Endovascular procedure (angioplasty or stenting)
- introductory consultation with the leading doctor
- 5-night stay in 4-star hotel (breakfast included)
- Transportation to the examination and procedure facilities (Doppler, MRI, surgery)
- Transportation from/to Pyrzowice (Katowice) or Balice (Kraków) Airport
- EuroMedic personnel assist during your stay
- telephone hot-line assistance

- If for medical reasons angioplasty or stenting cannot be performed the package price amounts to:
- 2 700 euro : Full diagnostics with phlebography
1 800 euro : color Doppler ultrasound and MRI examination

It took about a week for them to rely
Hope this helps :)
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Postby ErikaSlovakia » Fri Feb 12, 2010 10:32 am

dudkova wrote:Hi,

have any of you written to the new dr Simka's address (info@euromedic...) recently? I have been waiting for the reply for a week now. I remember people writting they got the reply after 2-3 hours, maybe a day.

I want to make sure whether they do not get my emails/ or whether they ignore them for some reason.

thank you in advance

Natalia

Dear Natalia,
these days it takes 2-3 weeks until you get a reply. When I started to contact Dr. Simka last year in July it took one day.
They have simply too many patients and they are very busy but I always got a reply. I do not hink they ignore some e-mails.
Good luck!
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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Postby acol » Fri Feb 12, 2010 10:41 am

Edser posted this link on Facebook. I hope I'm not duplicated this post but it must be of interest to anyone who has been to Poland or will be going in the near future. http://www.ms-mri.com/docs/Simka-hamilt ... csvi-1.pdf
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Postby Zeureka » Fri Feb 12, 2010 11:26 am

acol wrote:Edser posted this link on Facebook. I hope I'm not duplicated this post but it must be of interest to anyone who has been to Poland or will be going in the near future. http://www.ms-mri.com/docs/Simka-hamilt ... csvi-1.pdf

Interesting idea: blood-released neurotransmitter...
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Postby Mutley » Thu Feb 18, 2010 10:26 am

So it’s been about 2 months since my foray in Poland and I thought it time to give you all an update.

Unfortunately, all of the improvements I came back from Poland with have disappeared :( . I’m crushed but I’m not beaten. As some of you will recall, I only had angioplasty when in Poland and although nobody ever said that its potential effects would be permanent I really didn’t expect them to be this short-lived. Oh well. I’m still glad that I had it (ballooning) rather than jump straight in with stents as I think it’s much better to go down the safest route first if at all possible.

I think that things started to deteriorate within the first 2-3 weeks since coming back and I’d assumed that it was partly due to the fact that I’d had a few colds, and partly due to the stress and lack of sleep that comes with a newborn baby :D . But I think I may have been distracted by my optimism a bit. Reality check time.

So what now? Well I think that I now need to pursue more of a long term fix, perhaps stents. I’m not 100% sure why stents weren’t deployed first time, although I do know that Dr Ludyga prefers to balloon first wherever possible, so at least I’ve given the non-stent option a shot.

I’ve been sharing my progress reports with Dr Simka and I’m waiting to see what he suggests as the next step forward. He goes on holiday from today until around March 11 so I’ll have to wait. Intriguingly, his penultimate email suggested a potential ‘control visit’. Anyone know what that entails?

Anyway, I’ll report back when I have some news and I will probably post a new topic to tell you all about Mutley’s Liberation part 2.

Take care.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby acol » Thu Feb 18, 2010 10:40 am

Hi Mutley

I am so sorry to hear your news. The more that I learn from your experience and that of Wonky1 (and, of course GiCi), the more it convinces me that stents are probably necessary in most cases unless there are compelling medical reasons not to do so. In due course I hope you do get re-checked because for your own peace of mind you will need to discover if the vein(s) have reblocked. Please keep us posted.
Nigel
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Postby LR1234 » Thu Feb 18, 2010 10:48 am

Hey Mutley,
Dr Simka has suggested a "control" visit to me too.
I want to go back to check everything is still flowing.
I am sorry to hear that all your improvements have gone.
I wonder whether the blood thinners help the MS symptoms??
Keep us posted.
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Postby Pepe » Thu Feb 18, 2010 10:54 am

Hi Mutley,

I am sorry for the bad news. Maybe placing one stent you will have some improvements again. I wish all the best to you. Please, keep us informed. Yesterday, I posted the first Maria's update (1 month after the intervention) and she is doing well...so far.

Good luck Mutley!
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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