News from Rici, a polish patient being operated

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

Postby ErikaSlovakia » Sat Oct 24, 2009 12:11 pm

Needled wrote:Rici, Sorry to hijack your very exciting post, but please just for a minute...

Erica,
I know I must stop LDN 72 hours before the procedure.

Is there something you wanted to tell us? 8O :D

Was it question for Rici or for me? Rici is not on LDN. He thinks about it.
As for me, I am trying to get all information to be ready.
I still do not have any exciting news. Dr. Hartel is supposed to check my MRV this weekend. I have the court on Monday in Slovakia so I can not be in hospital if that was the question. No doctor in Slovakia knows how to fill in the form for the insurance company and they do not want to help my GP. I am supposed to meet an angiologist in Slovakia next week.
Erika
P.S. I am fine, just my vacuum cleaner is broken - what a problem :)
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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Postby Needled » Sat Oct 24, 2009 12:18 pm

OK, thanks Erica. Just checking on you, and as always, sending good thoughts and wishes your way.
Rici, sorry for the interruption. :oops: Please keep the updates coming. It is all very good news and very exciting!
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Postby Ana » Sat Oct 24, 2009 2:43 pm

Rici was asked today whether he feels his stent in the neck during eating, turning his neck etc. . Here's his answer:

"While eating I don't feel the stent. Only once during yawning I felt a slight sensation of pain. They told me to take a little care in case of having to sneeze. Apart from this, no problems! I don't feel any pain while moving my body."
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Postby Ana » Sun Oct 25, 2009 3:31 am

Rici uploaded a better video with a medical description:

http://www.youtube.com/watch?v=tlsHJyGhI4g

Have fun! :D
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Postby Sharon » Sun Oct 25, 2009 7:24 am

Thanks to Rici - great video with captions!
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Postby Ana » Sun Oct 25, 2009 10:12 am

Day 6

"Also my bowel movement has got o.k.. It's since a week since I haven't done my specical physical exercises. Before the operation this would have caused immediately problems, especially concerning "double" vision, speaking and my fingers. Now everything is still o.k - without these exercises!"
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Postby SammyJo » Sun Oct 25, 2009 11:59 am

Wonderful video Rici!

There are now several vids showing in YouTube on CCSVI, there is one of Zamboni's illustrations, uploaded 10.22.2009, that now has an English narration (w/ a nice Italian accent) This may have laready been posted on TIMS but here it is again

http://www.youtube.com/watch?v=GYvgsiJHhLQ&NR=1
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Postby Brainteaser » Sun Oct 25, 2009 2:05 pm

It may have been covered elsewhere, but how do the Simka stents and the Dake stents compare? I recall that Dake started with larger ones and fine-tuned to smaller ones. What about Simka?

Thanks,
Phil
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Postby Ana » Sun Oct 25, 2009 2:29 pm

I guess that Dr. Simka is using the same ones as Dr. Dake because they are working very close together and are discussing their cases, also with Prof. Zamboni. I know that Dr. Simka spoke with his fellow doctors before his first CCSVI operation. So I am sure he knew what Dr. Dake had to find out by doing and it helped him with his own operations. The first patient Rici had a special problem with the valve of the vein.
Last edited by Ana on Mon Oct 26, 2009 6:40 am, edited 1 time in total.
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Postby Rokkit » Sun Oct 25, 2009 5:35 pm

The idea of all these guys talking together and figuring this all out just thrills me to no end!
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Postby Arcee » Sun Oct 25, 2009 6:11 pm

I agree! Absolutely exciting.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Ana » Tue Oct 27, 2009 5:00 am

News from Rici:

"Today I made it to stand for the first time since 2 years on one leg. Only for seconds but better than before! I phoned with Dr. Simka. He says that after the operation there will be 2 steps forward and one step backwards. So this makes one step forward in the whole!"
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Postby Ana » Thu Oct 29, 2009 10:38 am

Day 10

"Yesterday in the evening I did my new exercises on the floor. I didn't have any difficulties with standing up to the bed - which is a big difference to the former times before the operation. It has been 10 days since I stopped doing my former special exercises and my problems concerning speaking or seeing double images didn't return. If I had stopped these exercises before the problems would have returned within 2 or 3 days. My new exercises are different and have nothing in common with the old exercises."
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Postby Ana » Sat Oct 31, 2009 9:11 am

Day 12

"Today I slept like being dead. Very sound and being fast asleep. I haven't slept like this since years and had to go to the bathroom only once. I'm feeling myself more at ease. Before the operation there was always a feeling like having to carry a heavy rucksack or that my whole body had 200 pounds too much and weak legs. Now day by day this gets more easier and better. Taking a shower has become a nice thing again. Today I had no spasms in my legs whereas spasms used to drive me crazy before."
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Postby cheerleader » Sat Oct 31, 2009 9:29 am

Ana-
All of this is wonderful news. Thank you for being our translator/reporter for Rici. Perhaps you can help him set up a post on the tracking thread?

Please share with Rici that the deep, restful sleep has been with Jeff since his stenting six months ago! It is wonderful to hear no more snoring, deep relaxed breathing, and to know his brain is getting oxygen throughout the night. His trips to the bathroom and leg spasms have been reduced, too! All good news, but Dr. Simka is right....somedays will be better than others, and do not be discouraged if there is a step back.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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