Brynn's Trip To Poland! I am Here!

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

Postby sbr487 » Sat Jan 23, 2010 12:57 am

Lot of things have happened in last few months mainly due to some wonderful doctors out there and amazing people in this forum.

I think real stories like these is the best way to show your gratitude to all these folks.

Congrats!
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Postby wonky1 » Sat Jan 23, 2010 1:15 am

:D Awesome :D
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Postby ClaireParry » Sat Jan 23, 2010 2:55 am

Congrats Brynn. That's great news!!! Claire
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Postby crocky » Sat Jan 23, 2010 3:16 am

Thats brilliant news - keep us all posted on your progress
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Postby costumenastional » Sat Jan 23, 2010 7:07 am

BRAVO!!!!!

keep us posted friend. it s all gonna be better from now on.
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Postby Brynn » Sat Jan 23, 2010 8:39 am

Day 2

I had gotten so much comfort and information from the many threads on this site that I wanted to share details of my trip that might be helpful. My husband and I took a non-stop flight from Seattle to Frankfurt, Germany with Lufthansa. I can’t praise them enough! They were SO helpful and accommodating of my wheelchair and mobility issues. Using our air miles, we traveedl in Business Class, which I mention only because of the great leg room for such a long flight. We had a three hour layover there, which I would recommend because that airport is HUGE! If you might also be traveling in a wheelchair, you will disembark onto a vehicle that lowers you down to the ground and take a special bus to the terminal for customs. All this takes some added time, so the three hours worked well. It also gave us time to find currency exchange to get some Polish funds. The Lufthansa attendants also did a fabulous job of guiding us to all our needed stops for the transfer.
Once in Katowice, we took a taxi to the Qubus Hotel. I chose this hotel based on Muzzy’s praises in his thread. In fact, before we left, I cut and pasted each of his thread postings into one document and brought it along for all of his great information! Thanks, Muzzy! The taxi from the airport cost 150 in Polish funds, so about $50 US. The hotel has been very comfortable, with a large handicap accessible bathroom and a nice restaurant with a wonderful breakfast buffet that is included with the room. On the 20th, we headed to Zabrze, 3 Maja street No 15 for the MRV. Definitely print out Muzzy’s detailed directions. The entrance is on the back side of the building and I was able to make out a reference to the pediatric area here, too. To the immediate right of the correct door is a unique, glass enclosed “garage” type building that they pull the ambulances into and close to unload. Here is the Polish phrase that Muzzy thought would be helpful with getting directions in the building.
Proszę, pokaż mi drogę na oddział rezonansu magnetycznego.

The cost for this test was 450 Polish currency or about $200 US. This was paid at the time, in cash. I went away with 2 CDs and 2 Xray type photos for my meeting the next day with Dr Simka. We had our taxi driver wait for us here because it didn’t look like a very easy place to catch a taxi. Muzzy’s talk about the road construction was correct, so give yourself an hour to get there. Anyway, I will write about the procedure day tomorrow. Thank you all for the warm wishes and all my benefits from yesterday are still with me. :D Brynn

-Ozarkcanoer, I will add to the sticky over hte next couple of days!
-Fiddler, I did not go back to the clinic today, perhaps I will email Dr Simka next week. One would sure hope that no one would think they could buy a placement spot!
41 years old, dx 1998, current EDSS 6.5
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Postby pgm1 » Sat Jan 23, 2010 2:00 pm

Hi Brynn

Congratulations! such good news :D

Pam :)
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congratulations

Postby Dovechick » Sat Jan 23, 2010 3:12 pm

Brynn, so good to hear that you had a great experience in Katowice. We are going there next month and have appreciated all the informtion we have gathered from the people who have gone before us.
I await in anticipation to hear of your continued progress.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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hello

Postby leetz » Sat Jan 23, 2010 10:49 pm

this is leetZ the above message under leetz was sent by my sister...just so there is no confusion..i am the one with ms...my family is just trying to help me...i just had a veno-gram and it came out fine...which does not settle right with me...read my thread under LEETZ MRV PICS in this forum...we are trying to determine how much the cost will be for 2 people airfare..hotel and procedure US dollars...i/we are desperate and need to know number's...AMERICAN DOCTOR'S HERE IN NY ARE INTIMIDATED AND SCARED TO TREAT CCSVI(AT LEAST THIS HAS BEEN MY BATTLE)....PLEASE SOMEONE ANYONE HELP!!!

BLESSING'S...LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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travel

Postby Dovechick » Sat Jan 23, 2010 11:45 pm

Leetz, no one can really give you answers about the cost of travel... hotels etc. There are too many variables... You will have to do some google search for flights from where you are, hotels you can access, where you are travelling to etc.
All this information is available online, you will just have tofind someone in your circle of friends and family to do the internet searches for you if you are not able to do them yourself.
If you need help with finding a hotel, look for the Tourist Information in the town you are going to.
Look for airline going to place you want to fly to that is how you will find out the price of a flight, get the atlas out if you can't get a direct flight... etc etc
Be careful of people offering to do this for you, the cost is bound to be higher, in some cases 4 times as high.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Sun Jan 24, 2010 10:20 am

Hi Brynn

Delighted that you got this procedure so quickly. Good thinking on your part to get yourself put on such a short notice reserve. Your head must be spinning with all the things that you did in such a short notice.

Every person who posts their experiences, makes life easier for those who follow.
Nigel
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Postby Brynn » Sun Jan 24, 2010 10:57 am

Hi Leetz, the procedure cost $7000. We used air miles for our flight, so it was no cost, but I think with a good notice, the flight can be found for about $2000 a person from the states. The hotel was going to run about $800 for the week but the funny story is that my husband went upstairs to the caasino last night in the hotal and won $2500!! :lol: Pretty crazy good! Leetz, I would look on the forum, maybe the second now, but there is a lady named Casey (?) who found a doctor in NY who performed the testing and surgery on her husband 2 weeks ago. Otherwse, Dr Simka is booked into 2011.

We are flying home tomorrow, leaving at 6am, so I will be down for a bit and will check back in on Tuesday, Thanks fo rthe good wishes everyone, Brynn

Dovechick= I know you will have a tremendous experience over here. All my blessings for great healing! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Brynn » Sun Jan 24, 2010 11:16 am

Leetz, here is that thread with the name of the doctor in NY. Good luck, Brynn http://www.thisisms.com/ftopic-8903-day ... asc-0.html
41 years old, dx 1998, current EDSS 6.5
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Postby SandyK » Sat Feb 06, 2010 9:49 pm

Hi Brynn. Anxiously awaiting any updates as to how you are feeling.
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Brynn's trip

Postby Dovechick » Sat Feb 06, 2010 11:39 pm

Thanks for the update Brynn, pleased to hear of your good luck. You are right, Ella and I are off to Poland a week on Tuesday. We have had to do a bit more fundraising as the cost has gone up by about $2000 from what we were originally quoted. Luckily our flights costs us very little from UK.
I'm eagerly awaiting your good news, but I suppose it will take a while to recover from the flights and stuff, so take it easy.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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