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Posted: Tue Jun 15, 2010 4:00 pm
by DBird
is anyone else concerned about flying too early with balloons. We are waiting for a week if treatment happens before we fly back to Winnipeg, but another thread has put a little doubt in my head about whether we should stay another week. On it they are wondering if cabin pressure is causing restenoses. Any thoughts on that?

Posted: Tue Jun 15, 2010 7:33 pm
by facetspera
Two of us are coming/going to Poland June 25th. We decided to stay for a couple of weeks after the procedure due to concerns about a long flight after the ballooning and also because of the blood thinners.

I also know from other long air flights it takes me a while to catch up from the flight. Staying a couple of weeks seemed good because we can both stay longer and rest. It hopefully will help sort out what is extreme exhaustion and adreneline from what is the effects of the prodedure.

Also FYI I decided to go see my neurologist to tell her I was going to Poland. Now I did not expect a high five but I thought she was channeling my mother when I was fourteen.

While it doesn't deter me, it is rather unnerving to realize how much I did not question before. The interesting piece is that TIMS has given me access to so much information that I don't put my neurologist on such a high pedestal. I listen to her and hear what she says but I no longer just accept everything as truth when it is opinion.

I think it makes for a more in formed discussion. I'm sure she would rather me nod and agree.

Posted: Tue Jun 15, 2010 8:58 pm
by Billmeik
hey all

i sent sue home and came down to prague. wo great shots here.

Thinking back I can see how this shouldnt be recommended for everyone.

Money is the first thing. If its a ton for you remember irishmom. Some

people get nothing for it and that may be too risky.Second this IS travelling. Kate

talked about two types: those who want everything to be just like home and

those who want to try new things. If you are in the former group you are
Y
going to be disappointed. You want to look forward to trying polish food,

learning a few words of polish, even seeing some sights...

last there are medical questions. Are you ok with a 12mm stent in your vein which is about 6mm?Its not going to migrate when its so big, but who knows how it will stress the vein long term. my doctor wife talked me out of it and really, my flow only improved by ten or twenty percent with just angio...It's experimental.

as patients we say "go for it, I did" because we assume that what we say doesnt matter.. so the docs err on the side of caution and we err on the side of enthusiasm. Its great waking up each day and wondering what has improved rather than what is worse.

Still be careful, the flight is hard, travelling might be hard for you, the money, the guinea pig stuff...

still it was really quite fun..and i'll probably stay in touch with my group...

Posted: Tue Jun 15, 2010 9:22 pm
by 1_sindy
Billmieik sorry can you tell me what you mean by this ...............people get nothing for it and that may be too risky.Second this IS travelling. Kate

Posted: Wed Jun 16, 2010 12:16 am
by BrendaReqier
Bill.... 'probably stay in touch'??? you bet you will LOL.

I think bill is trying to say to be sure to have lyme disease and other blood tests before you spend a lot of money on a trip in case there are problems such as wrong dx or other blood disorders that need to be addressed.

It is a long trip, jet lag is a reality, and you do need to have a desire to enjoy and embrace the culture when you travel anywhere. They do have KFC and Micky D's, but hey, when in rome.....etc. The food and sites have been fantastic and I know Guy and I will be taking a lot of cherished memories home with us, but travel isn't for everyone.

Also assess what you may feel are risks. At first I didn't think I wanted a stent, but my vein wouldn't stay open without it and I felt MS was much riskier for me than a stent, but these are all personal choices that vary with each one of us. just do your homework so you can be comfortable with your decisions.

Bill....you know you're supposed to take it easy even if you are enjoying yourself right? Be a good boy!! Oh, can't wait to see the shots you got in Prague.

Posted: Wed Jun 16, 2010 10:28 am
by DBird
Bill, MY wife and I spent my 50th birthday in Prague. A great, very old brew pub just off Wenceslas Square with great food, great beer and great atmosphere. 12 years ago things were cheap if you went a few blocks off the travelled path.
Go see the Jewish Cemetery, it's eye opening history. Enjoy the R&R.

Posted: Wed Jun 16, 2010 11:18 am
by Bizzy
Brenda, did you update anywhere on how your procedure went? You say you got a stent. Are you back home yet?

Sue

Posted: Wed Jun 16, 2010 11:43 am
by BrendaReqier
Hi, no I haven't really updated much yet, I need to catch up on my rest to really see how I'm doing. We go out for dinner every night, no restaurant in the hotel in Krakow, so over doing it also trying to see the sights. Magical city really. Going home in the middle of the night poland time, last day tomorrow, so when I get home and rest for a couple of days I'll update for sure.
oh and yes I got a stent. The left Jugular had "very very very bad' blood flow, they tried to balloon it but it wouldn't stay open. Scares me on and off a little bit.

Posted: Wed Jun 16, 2010 8:25 pm
by DBird
Canadians, There are SOME good things happening on Parliament Hill.

http://www.theglobeandmail.com/news/pol ... le1605138/

http://openparliament.ca/hansards/2282/163/

This one happened June 14th, The MS part starts mid page 17. The health Minister is still saying "testing". That sound familiar? What about treatment at the same time? Maybe we'll shame them into doing what's right.

http://openparliament.ca/hansards/2281/250/

Posted: Wed Jun 16, 2010 10:25 pm
by Billmeik
I mean doctors always say a bunch of things that boil down to 'be careful' and patients always say 'go for it' all I'm saying is 'go for it and be careful'

Kate and Chris are like wonderful parents to their ms children while you are there. Most problems (a bank machine ate my $%^&*card) can be dealt with. Get them to tell you the hilarious story of how they met...

but..

I've had kids pee on my leg in china, ridden across africa with a goat on my lap, had old ladies in Peru protect themselves with a cross because I was a white devil and still that night in hospital in Tychy ranked right up there with the most uncomfortable...Arms bound with pressure ecg on one side and Iv on the other you can't move... The room heads to 30 degrees there is no fan, a nurse comes in and speaks fast polish at you, you knock over the bedpan and coat the floor with urine....a window is opened and hundreds of mosquitos fly in that you can't swat away without setting off an alarm..

Not for everyone. Just sayin.. And not for those who arent ok with being part of an experiment. Well designed, super honest but some people might not think it's that. A test.

btw my first shot from prague is up

http://vrhotwires.com/Bill_Meikle/Movies/VFMS/vfms87/

spherical video. Drag the mouse and it goes around 360. You need a fast machine and a fast internet connection. I can justify this by saying its good to not fly for a few days, really I just love new places.

Posted: Wed Jun 16, 2010 11:52 pm
by BrendaReqier
awesome footage Bill! It actually looks a lot like Krakow, so cool to see!

Posted: Thu Jun 17, 2010 3:52 am
by 1_sindy
thanks for the info Bill and we will soon be off to poland in a few more days ,
Brenda glad you are geting some rest and hope each day brings you more good news and healing.
Bill did you get stents?
Dbird thank you for the reply and can't wate to meet you as well, we look forward to it,i know i am for getting people here but i know we will meet soon have a great weekend and keep safe see you all very soon in poland,i am feeling like it has be come a big family reunion almost........lolSee you all soon Sindy ............. and thank you to all the people who have posted here to help outhers with what they need to know or what to bring and thanks for releaving some of our stress and thoughts about going for it...by for now

Posted: Thu Jun 17, 2010 8:42 am
by ndwannabe
Billmeik wrote:
I've had kids pee on my leg in china, ridden across africa with a goat on my lap, had old ladies in Peru protect themselves with a cross because I was a white devil and still that night in hospital in Tychy ranked right up there with the most uncomfortable...Arms bound with pressure ecg on one side and Iv on the other you can't move... The room heads to 30 degrees there is no fan, a nurse comes in and speaks fast polish at you, you knock over the bedpan and coat the floor with urine....a window is opened and hundreds of mosquitos fly in that you can't swat away without setting off an alarm..
Plus no leg bending and that "chastity belt" of a dressing 8O

Thank you Bill. When I posted my experience, people were up in arms "What are you talking about! A procedure is a cinch! You are up and about in no time!" Not in my case. Yes, giving birth was harder :lol:

Even though mine was earlier in the season = cool air. After reading your story I am thankful for that even more.

IT WAS SIMPLE with DR K

Posted: Thu Jun 17, 2010 11:20 am
by Gordon
The Procedure was a cinch. Dr. Kostecki and group were amazing, not to mention Kate and Chris our guides.

Big deal, you have to listen to instructions DO not bend you leg (NDW !!) and take your IV of saline as well as pressure measurments for one night.

It was simple and I thank the group from the bottom of my heart.

G

Re: IT WAS SIMPLE with DR K

Posted: Thu Jun 17, 2010 12:33 pm
by ndwannabe
Gordon wrote:
Big deal, you have to listen to instructions DO not bend you leg (NDW !!) and take your IV of saline as well as pressure measurments for one night.
Pftftftf <blowing raspberries> Tough guy :roll: :lol:

Procedure might be called a cinch, it was the "after-party" in the hospital bed that did me in.

How are you feeling, Gordon?