Fiddler - first anniversary

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

Fiddler - first anniversary

Postby fiddler » Tue May 03, 2011 6:48 pm

My family and friends held a surprise "liberation anniversary" party for me a few days ago. Since TiMS is where I got most the information I used to make my decision to get "fixed", I want to update everyone here on my progress. Over this year I've seen the following changes:

Fatigue: this has been my biggest change. About a week after returning from Poland I noticed that I wasn't as fatigued, that special MS fatigue I expect you know well. Sometimes over the next few weeks or so I would say that my MS fatigue was 80% reduced. For me this was the biggest improvement in terms of change to my quality of life.

Mobility: Within a month of the procedure, I stopped using my cane except for longer walks, to provoke sympathy at airports, or when i was reminded by my physiotherapist that I should use it to help me learn how to walk right again. My EDSS has gone from 5.5 to 4.5, but I still have a bad limp and can't go more than a few hundred meters without a rest. I have days when my walking is worse, but sometimes that's caused by too much red wine.

Balance: My balance got better a few weeks after Poland and has stayed much better all along (again, except when I've had too much wine).

Strength: My left side has been weak since early in my MS, but I did see a noticeable improvement a few weeks after the procedure when I did my regular workout. While this varies considerably day-to-day, I would say that it has only improved a little more (if at all) in the months since then.

Bladder function: I was already on Flowmax when I had the procedure and I just stayed on it, so it was hard to tell if any improvements were due to the procedure or the medicine. However, I stopped Flowmax a month ago and most of my improvements remain.

And finally, starting a couple of months ago, I began noticing that my left foot wasn't feeling frozen all the time... I finally have warm feet again!

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Brightspot » Tue May 03, 2011 6:52 pm

Congratulations Fiddler, and thanks for the update.
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ccsvi

Postby blossom » Tue May 03, 2011 8:27 pm

it is good to hear you are doing so well. can hardly believe it's been a yr. since you got treated.
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Postby PCakes » Tue May 03, 2011 9:46 pm

Amazing!! Congratulations and thank you for dropping in to share the good news.
I love these posts :)
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Postby Cece » Tue May 03, 2011 10:07 pm

Congrats, fiddler. A full year!!
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Postby KikiT » Wed May 04, 2011 12:56 pm

Wow, you give me hope. Just got my appt and was so happy to know after one year, you are still doing fine....maybe the secret is the wine!!!!
I started to read some negative results and started worrying forthe first time.
I am going to start drinking immediately.
Best wishes for years to come!

kiki
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Postby esta » Wed May 04, 2011 1:13 pm

yeah on you fiddler :D
just realizd its mine too, but i had to go back in august when i got a stent, and now with intimal hyplasia, i still feel better, and have great hope it won't be long before they have more and more answers to all our complex issues.
at least our blood is flowing not refluxing.
fiddler, your posts convinced me about Oanda for transfering money to poland, tx
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Kathyj08 » Wed May 04, 2011 1:30 pm

Wow, a year already, and good news to go with it!
Glad to hear it!
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Thanks

Postby fiddler » Wed May 04, 2011 3:09 pm

Thanks, everyone and here's hoping there continues to be good news for all of us this year (as I raise my glass in a toast). Hmmmm... maybe it is the wine that's kept my blood flowing so well! :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby ozarkcanoer » Wed May 04, 2011 4:09 pm

fiddler..... I love this "patient anecdote". It is the stories like yours that give us all hope :)

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Postby Johnson » Wed May 04, 2011 4:33 pm

Good on you, Ted!

Last year at this time we were wondering if the Icelandic volcano was going to keep us away. I had my alternate route through Tokyo-Moscow-overland all mapped out. Thankfully, I didn't need it.

And ditto to Esta on the Oanda tip.

Keep on with the red wine, I know that it helps. Hiccup.
My name is not really Johnson. MSed up since 1993
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Walk-aide

Postby fiddler » Wed May 04, 2011 4:48 pm

Yes, (not) Johnson, we got lucky with the volcano thing.

By the way, I didn't mention that I got an electronic walk-aide ($6000, paid for by our HR dept) to help with my continuing toe-drop. It seems to help some. Now that the snow and ice is gone I should be able to give it a real test with some longer walks.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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fiddler

Postby zinamaria » Wed May 04, 2011 5:57 pm

This is so encouraging, Fiddler (on the roof, soon?) and thank you for the post. I could care less what the skeptics think, we are the science.

I hope many, many more improvements come your way.
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Postby WeWillBeatMS » Thu May 05, 2011 8:38 am

Congratulations fiddler. And thank you stopping back in to give us an update a year after your Liberation procedure.

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Lasts

Postby fiddler » Thu May 05, 2011 9:43 am

Oh, and here is an excerpt of a more subjective summary of what "liberation" has done for me that I included as a testimonial in the http://www.newhopeforms.ca website:
I was diagnosed SPMS in 2004. By mid and late 2009 my symptoms were such that my life was filled with many "Probably the last time"s: probably the last time I'll be able to go sailing, probably the last year I'll be teaching, probably the last time my wife and I will be able to travel together overseas.

... However, perhaps my biggest change is that I don't talk about "last time"s any more. If I retire from teaching, it will be because I want to, not because I have to. I look forward to traveling overseas again, sailing again... I can look forward, with reasonable hope, to a decent quality of life rather than to a life of rapidly diminishing expectations and the likelihood of being a burden on my family and on society.
Last edited by fiddler on Thu May 05, 2011 10:22 am, edited 1 time in total.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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