Brynn's Trip To Poland! I am Here!

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

Brynn's Trip To Poland! I am Here!

Postby Brynn » Fri Jan 22, 2010 1:39 pm

Hello everyone! On December 12, 2010, I had received my confirmation email for a September 2010 appointmentwith Dr. Simka in Poland. At that time, I had mentioned to him that if he ever had a cancellation that he wanted to fill, that I would be there with a two day notice. Well, fast forward to last week and Dr. Simka wrote me saying that if I could be there by Jan 19th, they would do my MRV on the 20th with the Doppler and surgery on the 21st! So I am now sitting in my hotel room in Poland, with the procedure having been done last night! :D :D What a whirl wind! I would have written sooner but this really is the first chance I have had. The actual procedure only took about an hour, with a stent put into my right jugular vein and the angioplasty balloon done on the left. The three doctors were very pleased with how well it had gone. I stayed overnight in the hospital and woke up with two normal feet, rather than the cold, purple feet that I have had for the last two years!! :lol: They have been warm all day with normal color and actually tingled for the first half of the day....I think the skin tissue was getting used to proper blood flow again! I have been pretty exhausted, as you can imagine, with jet lag from the west coast on top of surgery. I really believe this is going to do tremendous things for me. I also noticed improvements in my voice quality, breathing and balance today, which has been pretty non-existent for a while. I came over here in a wheelchair so I don't have my walker to do any comparing with the walking, quite yet. The other big initial improvement is that I have had NO pain in my neck AT ALL today, and my neck has hurt every day for the last six months! :o I will write some more tomorrow with more details about my trip. One added thought for tonight….the only reason I could afford to do this was that I cashed in 210,000 air miles. Otherwise, the airfare for two of us with no notice would have cost as much as the entire procedure! ALL I CAN SAY IS THAT THIS WILL BE SSOOO WORTH IT FOR ALL OF US! Bye til imorrow! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Becia » Fri Jan 22, 2010 1:54 pm

Exellent news Brynn, take care and thanks for this message!
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Postby tlynn » Fri Jan 22, 2010 1:59 pm

Hi Brynn,

Awesome to hear your news. You must be giddy.
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Postby ozarkcanoer » Fri Jan 22, 2010 2:00 pm

Brynn,

How wonderful for you !! Keep us posted. You might consider adding yourself to the "Tracking" sticky here.

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Postby hoodyup » Fri Jan 22, 2010 2:04 pm

Congratulations! Wow. Cold purple feet normal again? I just know my wife would benefit from this, however, we must wait for the Stanford trials to begin. This gives me incredible hope. I thank you and all the others who keep me going with your updates and experiences. My wife feels that because of her disability level (EDSS 8.5) that the procedure will be of no or little benefit. Every day I scour the web to find examples of people who have similar symptoms and who have had the procedure done. This is the first I have seen of someone arriving in a wheelchair with purple feet. May I ask: were your feet painful? And what was your disability level before the procedure? It is great to hear your procedure went so smoothly. Congrats again!
Andrew
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Postby colmmc » Fri Jan 22, 2010 2:05 pm

I'm so happy for you while, simultaneously kicking myself in the arse
cancellations I never even thought.

well done quick thinking

colmmc
I just noticed your from oz Well done thats a huge distance to travel .
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Postby magoo » Fri Jan 22, 2010 3:23 pm

I am so happy for you!!!! I hope you have continued good health and a speedy recovery. Wow, you are brave to go all the way to Poland. Keep us updated :):)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Johnson » Fri Jan 22, 2010 3:29 pm

Brilliant! Congratulations, and all the best in your new life.
My name is not really Johnson. MSed up since 1993
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Postby AnnaP » Fri Jan 22, 2010 3:29 pm

Hey Brynn,

CONGRATULATIONS!! (that deserves all caps) You got your life back!

Anna
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Postby sunlounger » Fri Jan 22, 2010 3:56 pm

:D wow this is the best news congratulations :D
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Postby leetz » Fri Jan 22, 2010 4:10 pm

Hello!

I read your story and my sister is suffering from MS. American doctors are not helping her!!!! I would like for you to send me all the information on your procedure.... Please email me at edmundsautumn@yahoo.com

Thank you sooooo much!!!!!!!!!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Algis » Fri Jan 22, 2010 7:47 pm

Wonderful!
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Postby fiddler » Fri Jan 22, 2010 7:54 pm

Brynn, please see the PM (personal message) from me.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby SandyK » Fri Jan 22, 2010 9:27 pm

Brynn, you have done an amazing thing. I hope your trip back to Spokane is full of rediscovered adventures!
Diagnosed 1994, Self EDSS is 6.5
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Postby ErikaSlovakia » Fri Jan 22, 2010 11:26 pm

Brynn,
congrats! :D :D :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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