fiddler finally flying... to Poland

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

Postby Brynn » Tue Apr 27, 2010 4:31 pm

Never fear, Ted, you will have it and then everything will change for the better! :D Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Katie41 » Tue Apr 27, 2010 5:32 pm

Ted,
Meeting all the wonderful TIMS people who are there with you, the incredible doctors and Euromedic staff....an amazing, amazing adventure. Have a great time!
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Postby berriesarenice » Tue Apr 27, 2010 6:28 pm

Ted,

I am so excited for you!! I have to say that my group (early April) was lamenting that our time didn't overlap with yours out there. We had hoped to meet you. You did so much to help us all prepare for our trip. Thank you, thank you.

Enjoy this time. It is like nothing else you will ever do in your life.
I cannot wait to hear your results!

...and surely there will be a "Katowice Reunion" one day, yes? I'll meet you there
:D
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Eye and MRV are done - big day tomrrow

Postby fiddler » Wed Apr 28, 2010 2:59 pm

I had my MRV done this afternoon at the hospital in Zabrze (try saying that one with a mouth full of crackers!), a gigantic but sprawling health care facility. I was lucky enough to be the first in our group of three to be done (despite a glitch in the software that required a reboot) so that we got a ride back to the hotel with one of the new employees (Marek's brother). Poor Susan and Taria... it's going to be late evening for them.

That meant we were back early enough to have dinner with charming Inge and her husband Erik (where I followed the directions of other "liberatos" and stuffed myself - I won't be eating again for 24 hours), still leaving lots of time for "the shave" and all the other preparations for my day and overnight stay in the hospital.

Tomorrow's the big day, so I hope to get a good night's sleep. There'll be no blog entries tomorrow, so my next one will be on Friday. Thanks for all the kind words, everyone... here I gooooooooo!
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby mshusband » Wed Apr 28, 2010 3:01 pm

DO you know the MRV results, or will you find that out tomorrow?
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Postby Johnson » Wed Apr 28, 2010 3:01 pm

Weeeeeee!

Good luck, Ted!
My name is not really Johnson. MSed up since 1993
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Postby berriesarenice » Wed Apr 28, 2010 3:21 pm

Ted,

hurry, it isn't too late to order a last ham 'n cheese sandwich to your room from the midnight to 5am menu.
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Postby ozarkcanoer » Wed Apr 28, 2010 5:07 pm

Fiddler, I hope with all my heart that this works for you !!

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Postby NormB » Wed Apr 28, 2010 6:09 pm

Ted,
Get liberated my friend, I hope with earnest that all goes well.




Bet you miss a good lobster back home :0)



Take Care


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Postby tipsyturtle » Fri Apr 30, 2010 12:00 am

Ted,
You have been on my mind so much this week.
Will anxiously wait for your updates.
godspeed my friend,
jo
Katowice, April 7/8
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I'm back

Postby fiddler » Fri Apr 30, 2010 1:36 am

I'm back from the hospital: stenosis in both jugulars, stent placed in the left jugular after an unsuccessful attempt at using only venoplasty. In the right jugular it looked like the ballooning would hold fine. More details to follow: first I have to have a shower and then a nap to make up for last night's poor sleep. I have to rest up because all the April 29th "liberatos" (and a few from previous days that are still around) have invited staff to drinks and dinner tonight.

No miraculous improvements to report. A few possible changes reported by a couple of the others from yesterday's intake (7 of us) and more good news from those liberated a few days ago that are still around. Most of us have the same attitude: this is worth the trouble even if "all" we achieve is to arrest the progression of MS, but we can all hope for "icing on the cake", and reports from others keep us believing that we might just get some of those extras.

It was great to meet Mary (and Richard), Taria, Susan, Lydia (and Charles), Piotr (and Margareta), Paul (and Lorna), Inge (and Eric) and Val (and her brother Warren)... our brothers and sisters in hope. I look forward to seeing all of your updates over the next few months. Every one we met is invited to our cottage on the Baie de Chaleur - the lobster is on us - hope to see you there, or perhaps at our "6000 km checkup" this fall.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Jaguar » Fri Apr 30, 2010 2:33 am

Ted
Great news - although not unexpected! So we've had the same work done on us - and we are none the worsae for wear.

I spent some time walking around Warsaw Old Town yesterday, and today I'm getting my workout at Schipol. The pain in my leg is still gone, my movement is still pretty bad, but that may get better with time if I am no longer favouring my leg due to pain. I have to really try hard to locate the stent now - it disappears quickly.


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Postby ndwannabe » Fri Apr 30, 2010 8:52 am

Ted, thank you for posting! You guys are great posting either right from the hospital bed or right after the procedure.

My nails are all gone after reading your the reports (I am a nail-biter) :lol:
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Postby ozarkcanoer » Fri Apr 30, 2010 8:55 am

fiddler, It is interesting to hear about all the other people who are being treated at the same time you are. I know you will keep us posted when you return home but for now enjoy your stay in Poland.

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Postby annad » Fri Apr 30, 2010 9:05 am

Congrats fiddler!
Hope you feel better . . . best wishes to you!
Have a great night there!
:)
a
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