My second trip to Poland

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

Postby Brynn » Tue Mar 16, 2010 9:40 am

Sunlounger- I hope you get some good answers from your Doppler! Hang in there. :D

Aaron- I would recommend looking up the thread on Dr Simka. My understanding is that he is not scheduling more appts, as he is already booked well into 2011. Generally, it is about a 6 day trip. I don't know what the current costs are for those that are currently on the list. English was not a strong suit for that location, but it was spoken enough to get things done. I would recommend that you email Marta, at info@euromedicpoland.com. She is Dr Simka's patient coordinator. I have heard that they will be opening a second clinic but you might get better answers by going straight to the source. Good luck with your testing! :D Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby acol » Fri Mar 19, 2010 3:22 am

I'm off to Poland next week and my main anxiety relates to the longevity of the treatment if stents are not used. So many patients seem to be going back a second time. With this prospect in mind I was interested in Brynn's comment that his 2nd visit worked out slightly less expensive than the first - would it be more comparable with the prices originally quoted by Dr Simka?

I have just seen a reference on Facebook to this website - http://ccsvi-multiple-sclerosis.com/201 ... for-ccsvi/

This site is 'Ameds Centrum' which advertises the services of Dr Tomasz Ludyga and quotes the original price list provided by Dr Simka. The website looks very current with March e-mail dates. Very curious.
Nigel
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Postby Brynn » Fri Mar 19, 2010 7:22 am

Hi Nigel, It's Brynn...and I am a woman. :D What they are charging is comparable to their angioplasty charge but it also includes the hotel and transportation, too. I think they are being very fair. I do agree with you though, I would recommend more conversation about how they decide the appropriateness of stents vs. simply angioplasty. I do believe that they do their best for us though. Good luck with your trip!! :D Good health to you! Brynn
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Postby acol » Fri Mar 19, 2010 4:35 pm

Hi Brynn

Sorry for my careless error. I won't make that error again. :oops:

Regards
Nigel
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Postby Brynn » Fri Mar 19, 2010 6:19 pm

No problem, Nigel. Technically, I think Brynn is a Welsh masculine name. :D Brynn
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Postby tipsyturtle » Sun Mar 21, 2010 8:20 am

Brynn,
Many of us have questions and/or concerns about stents. Was wondering how the past months have been with the stent you currently have- are you being monitored by any physicians at home? Are you on long term meds for the stent?

I wish you much success on your second trip to Poland!
jo
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Postby Brynn » Sun Mar 21, 2010 9:57 am

Hi Jo, I have met with my GP and he is a reluctant right now to deal with my stent. As time goes by, I might become more insistent about some blood monitoring...we'll see. I am eager to see if the position of my stent is holding fast. Generally, there is always a hinge of concern, but that is the risk I took when I pursued all of this and I have faith in the doctors to be using the best product available. In the meantime, I went to a large supplement chain in my town and they provided a lot of information about products that assist in vein health. Here is what I take right now: Cayenne/Garlic capsules which I am told thins the blood a bit, Zinc 50 mg, Nattokinase 100 mg and Venous PF by Jarrow Formulas. I certainly recommend asking your doctor whether these might be beneficial for you. When I go back this time, I intend to talk with Dr Simka about the long term maintainence, just to get their opinions. I tend to be a educated risk taker in life and compared to where I have gone physically, it was the right choice for me. If my EDSS was below 3, maybe I would delay a stent for a few years and let the momentum move the technology along. As someone with fatigue and needing a wheekchair most of the time, the benefits out weight the risks for me. Thanks for your concern and I will certainly keep you posted! :D :D Brynn
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Postby tipsyturtle » Sun Mar 21, 2010 1:01 pm

Brynn,
Thanks for your candid and informative response.
I truly hope that a return trip to Poland/Dr. Simka brings great results.
Do you have a date? I will be there for testing and possible procedure April 7/8 - if I have a procedure we will stay until the 12th. Just wondering if I'll run into you.
Am nervous and excited at the same time.
jo :D
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Postby tipsyturtle » Sun Mar 21, 2010 1:07 pm

Brynn,
forgot to ask...does this mean that you are not on long term meds like plavix or aspirin? I had heard that a stent meant life long meds?
And do you have any discomfort from the stent?
(Sorry for all the questions)
Jo
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Postby Brynn » Sun Mar 21, 2010 6:32 pm

No problem! The Q&A is why we are all here for each other! :D Yes, I do take a coated aspirin each morning. I have been on a Plavix equivalent medication that Dr Simka sent me home from Poland with, and I just took the last of that today. I eat a very lean diet, so I would not think that platelet build up will be a huge problem, but I plan on discussing it with Dr Simka. My appt is 4/26 so I will miss you. Don't spend too much time being scared, just go with excited! :D Take care, Brynn
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Postby tipsyturtle » Mon Mar 22, 2010 10:51 am

Thanks again. Look forward to good news from you!
jo

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Postby Brynn » Sun May 09, 2010 9:41 am

Hi everyone! My husband and I made our way across the pond on 5/6 from Seattle into Frankfurt, rented a car and drove down to northern Spain to spend the weekend with my brother and his family. It has been a year and a half since we saw them, so it has been really nice! Tomorrow, we are driving through southern France toward Geneva, then to Prague and finally into Katowice on 5/12.....quick, but should make for a gorgeous drive. We upgraded to a vehicle with a fantastic GPS nav system and it has made the driving ridiculously simple! :D So, I should have an update for you on 5/14! I am SO anxious to get my improvements back! Talk with you soon!
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Postby ndwannabe » Sun May 09, 2010 10:09 am

Thank you for the interim update! Will keep my fingers crossed for you and will be on the look out for the update around May 14th!
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Postby CRHInv » Sun May 09, 2010 10:37 am

Oh Brynn! I am so glad it is only a few more days until your next procedure. I am thinking of you and hoping for a speedy recovery of all of your improvements!
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Vhoenecke » Sun May 09, 2010 10:43 am

Only good thoughts coming your way from Saskatchewan. You know what to expect now so sit back and enjoy your ride. I am so happy for you and jealous that you are going back.

Val
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