Katie41 in Poland!

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

Katie41 in Poland!

Postby Katie41 » Wed Mar 24, 2010 2:56 pm

Hi All,

Yes, I made it to Poland and actually DID have the procedure. Over the past few months, the details that others posted were such a great help, so here goes.

Arrived in Katawice very late Sat. night, to be boisterously greeted by our driver, "make everything go right" guy, Mark and the director of EuroMedic logistics outside the clinic, Gregory(?). Their positive, joyous demeanor set the stage for our amazing experience.

Lovely hotel, accommodating staff, great room service. Our beds felt especially good after 17 hours of travel from Southern Calif. During our 5 hour layover in Munich, we were escorted to a lounge complete with pillows, blankets, lounge bed, fresh fruit, tea, coffee, snacks, hot chocolate, and a staff that alerted us to our plane's boarding.

The only hitch was getting off the bus that took us out to the plane in Munich. I had ordered a wheelchair and used it in Munich when we first got there. When we went to the airplane we went on a bus. I walked to the bus using crutches, was able to get on the bus, but, when we got to the plane, wasn't able to get down, as the step down was a very long step down. It was quite comical, with me saying in English that I couldn't get down and one of the ground transport people saying in German that I must! After a few minutes of this, the bus driver who had been standing there the whole time, finally figured out that there was a wheelchair ramp that could be lifted up, and down I went. This same person said I should have requested a wheelchair, but I had. When we got to Krakow, there was a wheelchair that took me about 100 ft. to a waiting bus that had a very small step that they took me up in the wheelchair. It again was quite comical since I had just walked down the plane's steps. So, the lesson is use a wheelchair. That makes everyone happy, and beware of long steps down.

Sunday: Took advantage of the delicious breakfast offered via room service. Slept and rested, then ventured out to explore the very small, upscale mall attached to the hotel. Had a lovely dinner at the hotel restaurant. We are light eaters, so we shared a delicious main dish and salad.

Monday: More of the same. Didn't have to have MRV, (having cleared it with Marta), and had the CD's with me, so we had a free day. We were so fortunate to meet fraser and her husband just prior to their departure for home. What a lovely couple! They were so excited to have had the procedure and he is doing so well. Wish we could have been here for the whole time together! Also, met Badger and his wife who had just arrived. They are also such a nice couple. So glad to have met them. Nothing to eat or drink after midnight.

Tuesday: Mark picked us up at the hotel lobby, taking us to the clinic for blood tests and then, working his magic, to another clinic for the comprehensive eye test so I wouldn't have to do it the next day after the procedure. He's the BEST! Back to the clinic, was very fortunate to be able to have a small snack and drink since it would be about 6 more hours til the procedure. There is a small cafe where you or your travel companion can purchase food and drink. They also provide water and juice at the clinic. Nothing more to eat or drink until 4 hours after procedure. Leave shoes in the hall closet, companion puts clinic booties over their shoes, so be sure to bring slippers. I didn't need any PJ's, the hospital gown they provide is good for at least the first 24 hours. If you had to stay longer, you might want your own PJ's. The hospital gown ties in the front.

IV started about 10 am., electrolytes, I think. EKG done, physical history and exam early afternoon. I brought two lightweight blankets and wore socks. Dr. , who did the procedure, explained the procedure and answered questions (I really didn't have any due to the great info shared by so many of you). Dr. Simka did the doppler exam around 3:00. Both were so low key, lovely. I was not nervous at all. I could only think about how very fortunate I was to be here, having this done when there are so many around the world who would like to be in this position.

Walked to the procedure room about 4:00. new I.V. hung, instructed not to move head/neck at all. There were arm extensions placed to put my arms on, much more comfortable than having them by your side. The room was very cold and had a (in my mind) stiff breeze, so I asked for a blanket. Whatever they gave me for a blanket/covering was perfect. The worst part for me was when they "painted" on the antiseptic on my groin areas. I was already cold and that was soooo cold! Can you imagine that was the worst part!? They explained everything they were doing in detail. They then put in a local injection at the insertion site, make the incision, and began threading the wire through. I ended up with three balloonings: one in the azygos vein and one in each jugular vein. They must have put something in the IV, because I felt tired, but did not notice feeling drugged at all. It was completed in one hour. They put a large pressure dressing on the insertion site in my groin. That was wrapped securely with something like an ace bandage.

Be careful not to bend the leg that has the insertion site afterwards. I started to as I was moving myself over to the wheeled bed and they were very adament about that. You have to stay flat or at least the bottom part of you, for 6 to 7 hours. You can eat in 3 to 4. I had taken snacks and water, but didn't need them, since they brought a "perfect" dinner about 3 1/2 hours later: 2 slices ham, 2 slices cheese, tea, a slice of toast with jam and butter, a hard boiled egg, cottage cheese. It tasted like the finest banquet ever!

Blood pressure taken throughout day and evening. They asked me if I would sign for a catheter, I declined, as I was afraid of bladder/kidney infections. There was no pressure to have it. For me, that was the right decision, but each person's situation is different.

The nurses didn't speak English that were on duty most of the time I was there. They seem to work 12 hour shifts, 8 to 8. They did have a worker on each shift that did. They were all so low key, not authoritative, were casual, and so helpful. It was quite refreshing!

Having an IPod to listen to was particularly helpful during the night. It blocked out the snoring and night hospital sounds. They checked the pressure dressing a couple of times and took it off some time in the night. The IV came out around 11pm. I was then able to get out of bed.

Up at 5:30 am. Light breakfast, shower. Mark picked me up at 7:30. I felt great, but ended up sleeping most of the day. My feet were immediately warm and needed socks no longer. I also took the two blankets off that I had brought. My core strength seems better, I seem to be able to walk some better. I haven't been up very much, except for a turn around the the mall and dinner. I still am tired, but a sleepy tired, not MS tired. I definitely don't have any urinary urgency! A great improvement. So, I'm off to bed. I'll post more improvements as I notice them.
Looking forward to meeting the many people who have arrived yesterday and today.
Katie41
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Postby LisaAnn » Wed Mar 24, 2010 3:20 pm

Congratulations Katie!! I'm looking forward to hearing more.
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Postby QueenMum » Wed Mar 24, 2010 3:59 pm

Great to hear from you and wishing you more great results still to come.

I tried the private message feature here, but it doesn't seem to be working.
You either got no emails from me, or about 10!! Sorry!

I just wanted to know that all went well and that you are OK. So thanks for
posting here. Your info is so valuable to all of us who will follow.

Take care. Looking forward to hearing more soon.
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Postby berriesarenice » Wed Mar 24, 2010 5:22 pm

Katie,

Congratulations! Thanks for such a detailed report. For those of us going in the future, it is comforting to have such a clear picture of the way things will work.

I had a couple questions. I hope it isn't too many. Please don't answer anything that makes you tired. You have been through a lot.

Do you happen to know the specific medications that were used throughout the procedure? I am breastfeeding a baby, and want to be able to research the effects of everything ahead of time.

Was there any restrictions on visitors at the hospital, such as number of visitors, or visiting hours, etc.?

Did you have a chance to discuss specific venography findings, and the doctor's recommendations, and your preference (balloon/stent) in light of his recommendations before they actually do the procedure?

Thanks so much
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Postby CureIous » Wed Mar 24, 2010 6:36 pm

Was so looking forward to hearing from my fellow Bopper! Sounds like it was low key, hope the future brings you much improvement! Thanks to Rhonda/MO too for giving us the heads up on this last July! Very jazzed over here, sleep fast and enjoy the rest of your trip! :)
Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ozarkcanoer » Wed Mar 24, 2010 7:21 pm

Katie !! Congrats and my wishes for your increased health. My favorite line in your post was "I still am tired, but a sleepy tired, not MS tired.". That is just what I want more than anything. I want to be able to think again. Keep us posted on your progress.

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Poland

Postby fraser » Wed Mar 24, 2010 8:07 pm

Hi Katie41!

How exciting to read about your procedure. I can't tell you how wonderful it was to meet you and your daughter on the day of our departure - especially talking with you (we packed a lot in!) about our experience in Katowice. I only wish we could have been there with you too! Your outlook was so positive and inspiring.

I am overjoyed to hear things went well. So, so happy for you!

I will keep checking in for updates. Wishing you continued improvement & wonderful reading your post, and knowing all the places and people you mention - such wonderful memories!

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Poland

Postby fraser » Wed Mar 24, 2010 8:07 pm

Sorry Katie41 - I have no idea why my post sent twice, so just trying to erase the 2nd one!
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Postby Vhoenecke » Wed Mar 24, 2010 10:19 pm

So good to hear all went well Katie.
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Postby Johnson » Wed Mar 24, 2010 10:54 pm

Thanks for the great report Katie. I can not wait to give my own. It seems like such a great experience, I almost rather going to Poland than the possibility - however vague - of being treated at home. I'm just an adventurer though...
My name is not really Johnson. MSed up since 1993
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Postby AllyCanada » Thu Mar 25, 2010 10:13 am

WOW Katie such great news... even more great info...than you for the
information about catheter as that was a great concern of mine..

cheers and once again wonderful news
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Postby Mutley » Thu Mar 25, 2010 11:35 am

Hi Katie41,

A great post with lots of info. I'm so pleased it went well for you and I hope lots of lovely imrovements keep coming your way.

Best wishes!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Enya » Thu Mar 25, 2010 11:59 am

All The Best! My husband is going to Poland in May.
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Postby magoo » Thu Mar 25, 2010 3:12 pm

Katie, I am so happy for you. It seems everything was in order and you received good care. Thanks for sharing such a detailed and informative report. I look forward to hearing about your improvements. Take it easy and let your body adjust to the new bloodflow.
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 Katie41 » Thu Mar 25, 2010 3:16 pm

Thanks for all the good wishes! Yesterday, I slept most of the day. I was surprised that I slept because I really felt good. I had very slight soreness on the right and left side of my neck and a very slight headache. Today things just got better and better! Wait until you hear!

Spent the day sightseeing in Krakow! I climbed up and down the 70 steep steps to the castle bell tower. Then I climbed some more steps to get to the crypts below the castle, more to get out of the crypts. Then we walked for three hours sightseeing and getting lost! I never tired. My knee that usually goes out of place after a few steps, stayed in place, as my muscles were doing the job rather than my bones having to. When in the cathedral, I looked up to see the very high vaulted ceiling. I always have to hold my head to do something like that or to even shop off a high rack. I suddenly realized that I had just looked up and didn't even think about it. I kept looking up and had no problem. My neck didn't get tired, didn't need assistance to get my head back up - I just straightened my head and it came up. I was amazed! On the 1 1/2 hour bus ride back to Katowice, I was bright-eyed and alert. My 34 year-old daughter fell asleep!

Met up with Badger, his wife, and Tim's wife. The two guys had their procedures today. They are both doing great! So many wonderful changes for them, but they will tell their own stories.

Thanks to all who keep giving support and keep getting the word out. It's so simple and yet, so effective. Lots of good publicity is coming soon!
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