esta and poland - finally my turn

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

Postby Johnson » Sun May 02, 2010 1:38 pm

All the best, esta!

I will be following you to Katowice in June.
My name is not really Johnson. MSed up since 1993
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Postby Dragonflypond » Sun May 02, 2010 2:53 pm

Hello My Friend,

Thanks for the link to this site. I see you already have so many supporters of your journey.

I have been a friend of Estas for 18 years and am so proud of her and the journey she is embarking on. Esta is one of the most positive people I know and she has shown me how determination and attitude makes or breaks your life. She is an inspiration to all of us here and holds a special place in my heart. My thoughts and prayers are with you all the way!

I love ya girlfriend.
D
Good fortune shies away from gloom. Keep your spirits up. Good things will come to you and you will come to good things. ~Glorie Abelhas
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Postby ndwannabe » Sun May 02, 2010 11:29 pm

"Tired reading"? Are you kidding? I am logging in day after day searching for new testimonies and thanking people who post them!

Wishing you the best outcome and keeping my fingers crossed for you

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Please keep on posting!
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Postby colmmc » Mon May 03, 2010 2:22 am

Good Luck to you. You will be in my thoughts & prays, With all that have been done, Or like myself waiting to be done.
Please keep us posted.
Thanks.
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Postby whyRwehere » Mon May 03, 2010 5:01 am

I will be checking back on your progress, but I think you should hope for, but not expect a miracle. I just don't want you to be disappointed, if you aren't dancing after the procedure. My husband had his "liberation" almost 5 months ago and he remains fairly the same. Despite that being not so great, we are happy if he does not get worse!! I think benefits will depend on your specific issues, and I hope yours will be resolvable. Good Luck!
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Postby NoDrainer » Mon May 03, 2010 3:26 pm

Looking forward to all your posts!!! Will be up your way in early July. Hoping to see you and R for a bite and a good yak. Deepest prayers each day, sent your way.

Itsa
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Postby ozarkcanoer » Mon May 03, 2010 3:33 pm

esta... I hope that this will help you !! I'm crossing all my fingers and toes for you and am looking forward to hearing all the details.

ozarkcanoer
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Postby prairiegirl » Mon May 03, 2010 4:41 pm

All the best to you, Esta-- look forward to hearing about your experience!
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Day -1

Postby esta » Tue May 04, 2010 1:06 am

Day -1

Here we are in Katowice, 1 day before my MRV and Eye Exam appointments and 2 days before the big procedure!

It was a long journey and having to sit up for 36 hours my feet are very swollen. We all took Arnica for our jet lag and so far it has worked well as I feel good today. I think we will all be having a nap this afternoon though...

Beautiful hotel, had a nice breakfast this morning and bumped Mark77 & DL! It's neat to meet people who are all here and excited to have this procedure even though we are all probably scared deep down.

The taxi driver picks us up at 8am tomorrow morning, stay tuned...

Esta

PS I think there's going to be a party up in SkyBar tonight!
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Postby sunlounger » Tue May 04, 2010 2:10 pm

all the best with MRV and eye exam :D
You might find that you’re not lost
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Postby Brynn » Tue May 04, 2010 6:37 pm

Have a wonderful couple of life changing days, Esta! It will happen! :D
41 years old, dx 1998, current EDSS 6.5
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Day 1

Postby esta » Wed May 05, 2010 9:16 am

Thanks to everyone for all of the well wishes!

Day 1

Last night all of us MS'ers got together for drinks at SkyBar and chatted the night away. None of us were worried about todays coming events.

Make sure you check out all your electronics and understand how they work with the higher voltage. We made a mistake and ended up frying the charger for my chair! Thankfully Euromed has been fantastic and has found us a replacement!

In groups of 3 we went for our eye exam in the morning and all got our printouts. Then we came back to the hotel until the afternoon when we went out in another group of 3 for the MRV exam. The MRV exam was 40 minutes away in a small mining town. It was the oldest hospital I have every been in, but it had the most up to date equipment.

The MRV was very loud, even with earplugs in. I just closed my eyes and did what she said. Make sure you don't move! We all got our CD's with the information and got driven back to the hotel. Even though I have all of the information, I don't know anything yet and wont until tomorrow when I get my doppler, blood test, and procedure done.

The drivers were great, they stay with the group the entire time and meet everyones needs. I really feel like they are taking good care of us.

There is no eating tomorrow, so we are going to go get a big, late dinner like everyone recommends!

Esta
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Day 2 & 3

Postby esta » Fri May 07, 2010 12:38 am

Day 2 & 3

Which is really Day 1 after my procedure.

We were picked up at 8am and all 6 of us arrived at the hospital. We saw the others from the previous day leaving. We were quickly split up into 2 rooms and poked and prodded to get the blood tests right away. Once that was done we were put into our own bed to wait for the Doppler. Before the Doppler, a neurologist stopped by interviewed and examined all of us. Then Dr. Simka came by each of us and did the Doppler. I found out that my left jugular was OK, but my right had problems and they would find out more once I was in getting my procedure done.

Once in beds, they hooked us all up to an IV and gave all of the women catheters. Then we had to wait. I was last of the 6 to be liberated!

I thought going in I would need 3 stents since my MS is so bad. Turns out my left and azygos veins where clear and didn't need anything. My right jugular was restricted and they did the balloon angioplasty on it. They used a 12 x 40mm balloon what ever that means... The angioplasty held very well on the first try so they didn't need to put a stent in. The operating room was incredibly high-tech!

Once it was over we were moved back to the beds for the rest of the night. 6 hours later, we all got some dinner. After the procedure I was having a heart arrhythmia (irregular heart beat) and was hooked up to a monitor and given some drugs by a cardiologist who came by to look at me. They seemed to make me feel quite ill and I couldn't eat any of my dinner. It did look quite though, perogies, meat, cheese, and some bread. Once done, it was lights out.

The night was difficult as I was not feeling well. Unfortunately most of the nursing staff did not speak any English so I couldn't explain what was wrong with me or what was going on. Even though we couldn't communicate, they were still very nice and comforting and managed to find someone that spoke a little or at least new the word vomit! They have me an injection of something and it sure made me feel better. The doctors speak English, just not the night nurses so it would have been good to have some Polish for things like nurse, headache, sick, vomit, etc.

No one really got much sleep. You have to sleep on your back only and they wrap a band around your legs where the incision was so I was uncomfortable. Rough night but I made it through. The drivers showed up at 8am to take us back to the hotel. Once back, I grabbed a bit of breakfast and headed up to my room to write this and relax. I feel much better now and am looking forward to going out for some fresh air in a bit.

How I Feel:

First off, I felt disappointed with only one ballooning and no stents thinking it should be more. I thought it would be a miraculous cure and I would feel way better instantly. The doctor told us it would take 3-6 months for changes to really happen.

Already there has been some good signs. At night in the hospital I was complaining that my feet were hot. When they took my socks off my feet were warm and pink instead of cold and purple as usual! Since the procedure I have been warm/hot all the time which is not "normal" as I am always freezing cold, even my hands are warm. I even wanted to buy a big parka before the procedure and now I definitely won't need to! Also, I was able to fire up my electric toothbrush on my own this morning which I couldn't do before. Some little improvements, but I have hope that things will continue to get better over time.

More updates to come!

Esta :D :D
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Postby esta » Fri May 07, 2010 5:32 am

i must babble since i forgot to mention there were 5 canadians and 1 from the uk in our group...also, the morning before, at breakfast, the guess who were playinbg on the music..good omen perhaps :D ..
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Postby BalsaBoy » Fri May 07, 2010 1:07 pm

Lynyrd Skynyrd?
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