fiddler finally flying... to Poland

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

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Postby BELOU » Fri May 21, 2010 8:32 am

Come on Fiddler... Stop kidding yourself. This is placebo effect. :wink:
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Placebo

Postby fiddler » Fri May 21, 2010 8:36 am

Yup, could be... where can I buy more of it? :D
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby PCakes » Fri May 21, 2010 8:39 am

we need to recalibrate the 'WOW" meter!!
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Postby esta » Fri May 21, 2010 9:29 am

hi fiddler
i've kind of lost track of time trapsing through europe the last 2 weeks, and catching up here on tims. firstly, congrats, we canadians are such a determined lot!!

i loved your 'its not working yet talk' to, 'well maybe', to 'wow'.we were all advised, 3-6 months for changes, and i believe we've all surpassed that. sooooooooooo its onwards for us all!!!!!!!!!! good for you ted!
esta
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Postby 1eye » Fri May 21, 2010 1:49 pm

oooohhh, you're making me jealous... and very very very very hopeful.

:D :D :lol: :lol: :D :D :) :D :D :D
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby 81Charger » Fri May 21, 2010 2:26 pm

Congrats Ted keep the good news & results coming in.

Glenn
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Re: Being Careful

Postby Zeureka » Fri May 21, 2010 3:54 pm

Cece wrote:
fiddler wrote:I've been warned to take it easy while exercising for at least a couple of weeks after stenting... anyone have information on that?

I know this is a late response but this was Dr. Sclafani's advice too...something along the line of "sit around and eat bon-bons" while you wait for your stent to fully fuse into the vein lining... :)
Yep, that was my question, and I think I replied OK with bonbons, but prefer sitting with sorbet on the terrasse? Would look forward to doing this the next month if should get such a level of progress on certain improvements such as you Fiddler 8) , wow and so happy for you!!! Congrats!
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Four Weeks Since Liberation Day

Postby fiddler » Thu May 27, 2010 7:59 am

So I'm four weeks down the road. Time to take stock of the changes and improvements I've seen so far:

    1. My energy is way up. It's still far from normal, but it's much better than it was before the procedure. If I push myself as I did yesterday unloading the car after our trip to the cottage, I can end up feeling pretty weak and some of the effects (bouts of tiredness, arms feeling like concrete) can come and go for a few hours after that. But if I don't push myself, I won't know how much I can do.

    2. My mobility is better. In the mornings and when I haven't been walking much, I only have a small limp. I start limping more after only a short distance, but it's still noticeably better than before.

    3. My balance seems better when I'm not tired. I hope to have objective measures of this after I see the physiotherapist next week

    4. The numbness, stiffness and clumsiness in my hands seems to be getting a little better every day. If I get real tired (physically), the symptoms seem to come back with a vengeance.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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A CCSVI Pilgrimage on the Camino de Santiago?

Postby fiddler » Thu May 27, 2010 8:01 am

One of my fellow liberation "graduates" of April 29 is asking about the interest in organizing a 500 km walk for liberated (or, as yet, unliberated) people, their families and friends on the Camino de Santiago from Biarritz, France to the cathedral at Santiago de Compostela. Of course, MSers could walk as little or as much as they are able and not many would have the time to be there for the entire trip, but the idea would be to have at least one liberated person walk for every part of the entire distance. The goal would be to raise the profile of CCSVI in countries the participants come from, perhaps raise funds for people who can't afford liberation... and celebrate our own liberations! People wouldn't even have to participate all at the same time: different groups could organize themselves to walk all or some part of the "pilgrimage" and just "register" with the organizing group so that the total number of walkers can be reported to the world. Certainly if a large number of people wanted to do this, you wouldn't want them all in one group, since that would make it too large and logistically complex.

It's an intriguing proposal, one that appeals to me and my wife since we were thinking of doing it before we'd even heard of CCSVI. At that time the idea was that she would do the walking and I would drive to meet her every evening - but maybe now I'll be able to walk part of it and do it (or the driving) in the company of fellow MSers!

I lived in Santiago de Compostela on a sabbatical before my MS hit: it's a gorgeous and interesting part of the world. Anyone else up for it?
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby mtf » Fri May 28, 2010 10:14 am

I'm in!
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Great!

Postby fiddler » Fri May 28, 2010 10:31 am

Muito bom, mtf! :D
Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby mtf » Fri May 28, 2010 11:00 am

Obrigada! :D
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Postby StentorKate » Fri May 28, 2010 11:17 am

Glad to hear of your progress Fiddler.
I'm hoping you'll agree when I say the most critical thing is to go in with realistic expectations.
I recently had the Liberation treatment in Poland with Dr. Kostecki.
It exceeded my expectations - but then I went into it with realistic expectations.
When you look at blogs and websites it seems that all you hear are the good news stories and you know, that's great - but there is another side. The diagnosis of CCSVI and subsequent treatment doesn't necessarily mean that you will be the same as you were pre-MS.
Recently I heard about 18 people who had seen Dr. Simka in Poland and had not had miraculous result and where they were angry and upset and saying some rather nasty things. During my time in Poland with Dr. Kostecki, out of 6 of us, one had no noticeable improvement, one was minimal, 2 were good and 2 were unknown.
Like I said my expectations were realistic - warm hands and feet, better swallowing, less tremors, got that and more. My leg hasn’t work since I was first diagnosed 31 years ago, I did not expect to run a marathon the next day – that would have been unrealistic. There has been no change to my leg, and I’m OK with that because I didn’t expect it to change, that’s not to say I wouldn’t be thrilled if it did get better.
I think if you go in with the right mind set, you'll be satisfied with what you get - <b>remember even though it's not a visible change, stopping the progression of this disease is the biggest gift of all.</b>
Here's hoping things continue to improve for you. Kate
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Postby Johnson » Fri May 28, 2010 11:37 am

mtf wrote:Obrigada! :D

ah, I thought that you were a man.
My name is not really Johnson. MSed up since 1993
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Thanks

Postby fiddler » Fri May 28, 2010 11:53 am

Thanks, Kate, and you're right: not getting worse is the meat of what I'm hoping for... and if I get some gravy with that, then it's a bonus.

And today was a bonus day for me. I walked over to the gym today with only a slight limp... doing my weights I noticed I had much more control and strength in my weak left side muscles. Coming back from the gym my limp was more pronounced again, but for an hour I was Superman (lite). :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
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