Report from Markus, first azygous stent in Poland

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Report from Markus, first azygous stent in Poland

Postby cah » Tue Jan 26, 2010 5:27 am

Hi, this is the report from Markus, a german patient who went to Poland, from the german forum on www.csvi-ms.net . (Translated with his permission of course). He went trough this journey completely on his self...

Markus wrote:On 1/19/10 I arrived at Katowice at 6 pm, checked in at Hotel Euro Residence and spend the night there.
On 1/20/10 I drove to the clinic (ca. 900m away from the hotel). There they took a blood sample, I met Pepe and his spanish wife (big hug). They said I shouldn't worry about the surgery, Pepe's wife was treated two days ago and she is fine. From there I was send in a taxi to another clinic nearby for eye examination. Optic nerve and visual field were examined for possible comparison later on. 2 patients from the UK were there and also one from the Netherlands with family. Her husband told me that the treatment probably be covered by insurance in the Netherlands. That's it for this day.
On 1/21/10 the surgery was done. Arriving at the clinic, I met again everyone I had met the day before. This three all were operated on 1/20/2010, they all said they had gained warm hands and feet after surgery and are less tired now. :? I'm not able to relate to this as I haven't had that.
Then I met Bibi and her son and Barbara. Thanks again to Barbara and her brother for translating that much, they were a great help. Only one of the kind nurses :wink: spoke english.

At about 6 pm it was my turn. I hoped I could get along without a stent (ballooning left/right and go) except if there's no other way, I thought.
Prior to that I had to shave my groin cause that's where the catheder goes in.
Dr. Lyudiga ballooned on the left first, then on the right two times but it didn't last. He asked if I want a stent, I thought about it shortly and then said ok. They put in a stent on the right side and ballooned the left. Before surgery I asked Dr. Lyudiga to definitely check the azygous vein, he did this of course. Short after that he said here it seems the main problem is located.
Dr. Simka turned the flatscreens in my direction and showed me the stenosis, it looked like the one in the report of Dr. Zamboni, very narrow. Dr. Lyudiga opened it two times with balloon, it felt much more uncomfortable than in the neck.
He said again that it didn't last and asked if I want a stent. Mm... this time I had to think about it much longer, but in the end it was clear from the beginning that I didn't want to go home with such a narrowing. I asked if anybody already had a stent in the azygous, as I didn't know of any, they said there were some in Stanfort and Italy but none in Poland. So it seemed this time I had to be a first and I said yes. This time I felt a strong pressure until the doc was done and it felt sort of sored, difficult to describe.
This feeling stayed after the surgery. I asked the doctors if this will dissolve and why it hurts in me but not in others, they said that it is possible that nerves nearby were damaged. :?
One day later I still didn't feel well, perhaps this was also sort of mental as I didn't want to have metal in my body. Improvements like the others had, like warm hands/feet I couldn't get as they were warm anyway, and being more awake and clear was impossible either because of the anesthesia. So I rested the whole day on 1/22/2010. The next day I drove home, it was high time to get out of this freezer, the morning was 20 degrees below zero. I felt astoundingly better that day. While driving home, I already realised there was something different with my left arm.

Arrived at home, I had to test my observation on my PC-keyboard. The feeling/sensitivity was better in the left hand, I could write better and faster with the left hand, the finger-to-nose test ran better than before. Also my left leg was better, I can stand better and roll the foot better when walking. :o
Moreover I realised that I feel not so beaten any more, when I get up I don't need so much time to shake a leg and I'm overall more awake.

Conclusion: The left side, arm and leg is better, these are reservations I had for two years from my heaviest relapse.
Fatigue is better/gone.
Eye problems, paresthesia and pain is the same, these are symptoms I have even longer.

That's how it could go on if I had my way. :P Also I hope everything will be fine with the stents. So far this journey was worth it. :wink:

Regards

Markus


Here's the link to the original, with two pictures of the azygous stenosis/stent:

http://csvi-ms.net/forum/viewtopic.php? ... 69&start=0
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby costumenastional » Tue Jan 26, 2010 5:48 am

One million thanks Cah...
And another one, and another one....
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Postby CRHInv » Tue Jan 26, 2010 5:59 am

Markus! Thanks for sharing your story. (Thanks to you too CAH!)
The day you had your procedure I was at Stanford for my two month check up. I was wishing there were new patients there for me to meet, but of course there wasn't. I guess it was you, just very far away. I am happy to hear of your improvements already. I suspect there will be more improvements. Rest and keep healing. Please keep us posted on how you are doing!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Pepe » Tue Jan 26, 2010 11:40 am

Hi Markus,

Congrats!. It was a great moment to meet you in Katowice. I asked cah about you... and he told me in a PM that you were going to write a report. I just now have translated your report to María and she asked me to send you a big hug. María has not had any significant improvements...apart from feeling her hands a bit warmer. Thanks cah for the translation. Markus, please let us know your improvements from time to time.

Well done Markus! All the best to you!
Pepe and María.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby ozarkcanoer » Tue Jan 26, 2010 12:02 pm

Thank you for posting all the details about Markus and Dr Simka !! The details make it so vivid. I can't imagine someone asking me "do you want a stent?" while I'm layed out on an operating table. And I love to hear about the improvements too, especially about the fatigue. I hope that many more people will follow you in Katowice and I hope doctors in other countries start liberating soon !!

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Postby Eep » Tue Jan 26, 2010 12:06 pm

I'm the husband of the Dutch women that Markus mentions in his post. My wife was liberated on the 20th just before the two english patients Nees and Ian. She got one stent in the right and ballooning in the left jugular. Thusfar, there are only (very) little improvements.

We've met Markus several times: he's a great guy. Unfortunately we didn't met Pepe, Maria and Erika.
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