fiddler finally flying... to Poland

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

Postby ozarkcanoer » Sat Apr 24, 2010 1:54 pm

I'm so glad that volcano ash subsided in time for you to get to Katowice !!

ozarkcanoer
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Postby CureIous » Sat Apr 24, 2010 6:21 pm

Goody goody goody goody !!!!!!!!

You Katowicer's go on which ya bad old selves!

:) Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby happydance » Sat Apr 24, 2010 8:46 pm

Glad you arrived safely. Wishing you all the best on your journey in Poland.
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Postby QueenMum » Sat Apr 24, 2010 11:14 pm

Wishing you an easy & successful procedure. AND Great improvements.

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Lots of walking... sort of

Postby fiddler » Sun Apr 25, 2010 3:06 pm

Today I did what was, for me, a lot of walking. Unfortunately, there was no way I could have traipsed around the castle after having walked (gimped) all the way from the hotel. I sat in the patio of a cafe while the others toured the castle. I'm hoping that next time, when I come back to Krakow after "liberation" and building up the strength in my legs, I'll be able to see the castle and many other points of interest that I'm just too disabled to walk to right now... well, I can hope, can't I?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Johnson » Sun Apr 25, 2010 3:23 pm

well, I can hope, can't I?

You sure can. And so can I. I hope to hear that you have jogged back to Krakow from Katowice after your procedure.

Good luck Ted.
My name is not really Johnson. MSed up since 1993
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some things to remember

Postby bobcat » Sun Apr 25, 2010 8:24 pm

good luck on your treatment, we just returned and my wife has seen good results. I posted earlier today, see "Our Poland Experience (April 14, 2010)"

some things to know....

- you will get to the hospital early but don't expect to have the procedure until later in the afternoon. We were there from roughly 9am and had the procudure about 4pm. Eat late the day before....because from that point on you will only get as much saline as your body can absorb with a shot of heparin for desert.
- The procedure takes roughly an hour
- you will probably be in a room with 2 other people. this is the room you will spend the night in.
- the night shift doesn't have someone who speaks english, so get your questions and concerns in early.
- there was some confusion as to when everyone could get out of bed to relieve themselves. The doctors said 6hrs post procedure, the night shift nurses said not until the morning. My wife catheterized so this wasn't an issue for her, but the others had issues after the 4 bags of saline they took in while waiting.
- post procdure/after you are out of the hospital you may be required to take a combination of the following medication equivalents (more specifically if you receive a stent)....heparin (blood thinner) self injected for 7 days, Plavix (anti-coagulant) 1 pill daily for 2mo, a anti-ulcer medication to help with the Plavix 1x per day for 2mo and 1 asprin daily for eternity.

I hope all goes well!! Good luck!!

If you have the time post procedure make sure you go to Auschwitz. It is only about 30min away and a truly humbling experience.
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Postby Brynn » Sun Apr 25, 2010 8:40 pm

Hi Fiddler! So glad you made it! I always think that everything happens for a reason...I was realizing that I was the only one who didn't make it with our week three group. But then, I started having ALL KINDS of troubles the other day and I learned I had a UTI! Would have hated for that to have reared it's ugly head in Poland! At least now I can get that fixed first and try the trip again in May. I will be thinking of you all and look forward to hearing about your improvements. :D :D Brynn
41 years old, dx 1998, current EDSS 6.5
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Krakow Pierogis

Postby fiddler » Mon Apr 26, 2010 5:32 am

My wife and friends are visiting Auschwitz today: there was no way I could have done the walking required. Instead I've organized to get my Spanish phone unlocked and loaded with pay-as-you-go credit, then gave Euromedic my local number to give to our driver who'll pick us up tomorrow afternoon. I've just finished lunch: pierogi ruskie (delicious, but not light) and an Okocim piwo (beer) at a patio on the main square, enjoying the 20 C weather. Tonight we'll probably go to the Alef restaurant in the Kazimierez quarter: near the Jewish ghetto in the Second World War, and (purportedly) Spielberg's favourite restaurant while filming "Schindler's List".
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Time for Katowice

Postby fiddler » Tue Apr 27, 2010 1:21 am

Thanks for the information, bobcat, and for the best wishes from everyone.

In the end, we didn't go to the Alef restaurant. My wife and our friends were too physically and emotionally drained after visiting Auschwitz and Birkenhaus, and I was too tired after walking around a bit. Instead, it was such a beautiful evening that we ate on a patio on the main square where we had a great (but heavy) meal. I don't think I've had so much cream since the Ukrainian Christmas meals of my youth.

This morning my wife and our friends are visiting the famous salt mines. This afternoon Maciej (pronounced Macheck, I think) of Euromedic is going to pick us up at the hotel to take us to the Qubus hotel in Katowice. I hope to meet quite a few of my TiMS friends there over the next few evenings.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Vhoenecke » Tue Apr 27, 2010 4:30 am

Hey Fiddler,

I am Val, my brother and I are here from Saskatchewan, Canada. My brother is Warren. We will probably be seeing you in the loby.
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Tomorrow's schedule

Postby fiddler » Tue Apr 27, 2010 8:07 am

We're here! Just over an hour (maybe 80 minutes) from Krakow despite the traffic there which slowed us down quite a bit at the start. Now I need to hook up with some of the other MSers here. The important part begins tomorrow: an eye exam in the morning and the MRV in the afternoon.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby mshusband » Tue Apr 27, 2010 8:33 am

Fiddler ... a few questions if I may ... pre-procedure ... and then you can answer the same question post-procedure.

How do you feel a few days before your liberation? Not MS how do you feel ... but how do you feel psychologically/mentally/emotionally about CCSVI?
Do you THINK that they will find stenosis?
Do you THINK you will feel better after having the liberation?
Are you NERVOUS (if so in what regards)?
Do YOU believe in liberation before you have it and that it's going to show immediate improvements?

I was reading a blog last night about CCSVI and liberation ... and the guy was hypnotized a few days before he had the procedure (I'm sure some of you have read this blog) ... and while he said he believed in it before hand ... under hypnosis he said he wasn't sure he believed in it.

Then after having the procedure ... he saw some amazing results.

I just wonder if we could get people's true opinions before it happens.

Whether they are just hopeful ... or whether they actually believe in CCSVI.

Thanks.
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What do I believe?

Postby fiddler » Tue Apr 27, 2010 2:20 pm

Hi mshusband,

So what do I believe? Given the evidence so far, I will likely have some kind of stenosis... I am SPMS and even in the Buffalo study 80% of people with advanced MS were found to have CCSVI.

Then, assuming the stenosis is significant, I believe (and it does make sense) that there should be a reduction in fatigue since hypoxia should be reduced. Anecdotal evidence suggests that I may have an alleviation of other symptoms (perhaps my hands will not be so numb, my feet won't get so cold, I may even trip less), but it's not clear why some MSers see these short-term improvements and others don't... how much of this variation is due to the placebo effect and how much is due to the actual variability in the causes and progression of MS?

Over the long term, I hope that the progression of the MS will be slowed or even stopped, but that is more a hope than a belief since we don't have much evidence either way and won't have for years, I suspect.

As far as being nervous goes, I guess my only real worry is that I'll be that one in 5 (or 10, or 20) that doesn't have CCSVI or that, if I have it, I'll be that one in a hundred that can't be treated.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby irishmum » Tue Apr 27, 2010 2:53 pm

Good luck Ted

I hope it all goes well for you. My thoughts and prayers are with you

Maureen
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