esta and poland - finally my turn

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

Too young

Postby fiddler » Fri May 07, 2010 4:38 pm

Hehehe... No BalsaBoy, you must be too young to remember: it's The Guess Who
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Too young

Postby BalsaBoy » Sat May 08, 2010 11:13 am

fiddler wrote:Hehehe... No BalsaBoy, you must be too young to remember: it's The Guess Who


I still think it's Lynyrd Skynyrd.
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Postby esta » Sun May 09, 2010 10:25 am

Day 4 & 5

Can you believe a neurologist came and saw all of us at the hotel 2 days after our procedure?
I think each person had a different interview. With me, he seemed a little skeptical but was adamant that CCSVI needed to be studied. We had quite a discussion on every MS person getting the treatment and then they can study it to death. He didn't agree or disagree. He seems to be doing his own study now as he was the same person who saw us all before the procedure. He wanted percentages of any changes. I told him my head was 90% clearer. He also seemed to re-enforce people to continue to taking their drugs, but since I don't take any, we just talked more about CCSVI and studies. He would like everyone to get back to him in 3-6 months with changes for his own study.

Can I just mention that it might be a good idea to get some anti-biotics from your doctor before you leave as getting the catheter seems to generally lead to a bladder infection.

Each of us have noticed small positive changes, all different, but all exciting. I have noticed that I am much stronger in my legs and I'm not as fatigued from the MS. As mentioned, my head is much clearer.

Our little MS group have all said our good bye's and are now going our separate ways. We will all be keeping in touch and monitoring each others progress.

We are now off to Prague for a holiday. I will post occasionally to include any new changes.

Esta.

PS It is definitely The Guess Who
PPS Happy Mothers Day to all mothers out there.
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Postby esta » Sun May 09, 2010 10:31 am

Oh by the way, we found a replacement charger for my chair by going to this little place called Auto-Meta just down from the hotel.

A very nice Polish man found us a charger that would work with our gel batteries on my chair and it works like a charm. I am now back in business and he even gave us a PL (Poland) bumper sticker for my chair!
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Postby esta » Tue May 11, 2010 1:13 am

one more thing about the catheter issue. i can only speak for myself as a woman, and my observations. we were hooked up to a saline solution iv the moment we were in bed. i was glad not to have to worry all day, let alone all night/ my roomy had to go but his jar thingy was all ready full. and, as we all know, the night nurses don't speak english... speaking of that though, when i had the heart med, i felt really sick. the nurse found an english speaking person right away, but that wasn't the middle of the night. so i do worry - a cane, an iv drip cart and a trip to the washroom
...then there's the big elastic bandage wrapped around you..oy vey...

i never got a chance toi really express my gratitde for everythig. it was so well organized and smooth, really, from start to finish. everyone was exceptional.
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Re: Too young

Postby Johnson » Tue May 11, 2010 1:31 am

BalsaBoy wrote:
fiddler wrote:Hehehe... No BalsaBoy, you must be too young to remember: it's The Guess Who


I still think it's Lynyrd Skynyrd.

Shucks, I was guessing that it was the Penguin Café Orchestra.

Glad to read your concise account and updates, esta.

Will you take the train to Prague? How far is it? My understanding is about 6 hours? I would love to see it myself.
My name is not really Johnson. MSed up since 1993
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balloons and stents

Postby Pauline » Tue May 11, 2010 1:34 am

Esta probably someone has told you already, but the balloon doesn't stay - they only inflate it while the catheter is in to open up the vein. If the vein stays open on its own then they don't put a stent in but the meaurement you gave sounds like a stent measurement. They gave you an 'information' card (A4 sheet of paper) with the details and medicine and it'll tell you there what they did exactly. The stent is a 'Balton' (not balloon) stent - mine is 12mm x 30mm.

Hope you're feeling better and better! Looking forward to hearing.

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Postby esta » Tue May 11, 2010 10:21 am

Hi Pauline,

On my sheet it says:
"Percutaneous balloon angioplasty right jugular vein (balloon Admiral 12x40mm)"

I just posted it here because I know there are some out there that like the gory details...
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scaffolding!

Postby Pauline » Tue May 11, 2010 9:33 pm

Ha ha - wonderful! I'm probably one of them. Whatever they put in I hope it's working and making you feel great!!

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Postby esta » Wed May 12, 2010 2:18 am

hi johnson

oh, i can hardly wait for your turn!!
there's 4 of us on this journey, to prague, so we jamede into a rental car. and suzzie, oure GPS guide got us to our doorstep-within walking distance to pretty much everywhere, only...every road is cobbled. i jiggled over them all the first day, butttt, i'm paying for it now. my head is still sooo clear, but my arms and shoulders are noit doing so well, but, i turned on my electric toothbrush still... thats my litmus paper test, could never do it before.
i'm worried i bounced my ballooning procedure out, since i had cold legs and feet last night, its all slow and take it easy stuff, i know..


i see now, i never thanked any of you for your well wishes, and i do so want to thank youll.
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Postby ljh » Wed May 12, 2010 11:50 am

WELL DONE, ESTA! the electric toothbrush works! looking forward to your return as a liberated person
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Postby esta » Sat May 15, 2010 8:19 am

Knowing what I know now a week later, I dont think it is wise doing the touristy things after. I am better in many ways like my speach has improved, my head is more clear, etc. However, everyone in our group caught something and has been sick for the last few days. I think I am just taking longer to recover. But remembering Erika from Slovakia words of how she got sick and some of the symptoms returned, she got better and Im sure I will too.

Speaking of that, we had a lovely lunch with Erika today in Bratislava. It was very nice of her to make the trip down and was a real treat for both of us.

I feel much better tonight after taking some grapefruit seed extract as it is supposed to kill anything in your stomach and seems to be doing a good job. I wish I would have taking it during the whole trip, but I didnt know about it until today.

We are going back to Katowice to see a friend who is also having the liberation treatment just before we fly home. I think I am going to try and email Dr. Simka to see if he can quickly recheck me with the doppler.

Thats all for now,
Esta
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Postby ErikaSlovakia » Sat May 15, 2010 9:44 am

esta wrote:
Speaking of that, we had a lovely lunch with Erika today in Bratislava. It was very nice of her to make the trip down and was a real treat for both of us...

Esta

Hi Esta, yes, it was very nice. I am so happy I could meet the first TIMS member in person.
I hope you recover soon!
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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Postby Johnson » Sat May 15, 2010 3:22 pm

It seems to have taken me a while to get here. Thanks so much for your well wishes, esta, and I am glad to hear of your improvements - even if somewhat rattled. I have to say that I am envious of your luncheon with Erika. I offered to buy her lunch quite a while ago. (I still might get there, Erika. I hope your trip to meet esta didn't tire you.)

I've wondered if taking side trips might be contra-indicated. It just seems such a shame to travel 8,000 miles and turn around and come back. I am a traveler by nature and history though. I want to hang out for 6 months and learn Polish. How many hours to Prague by car/train? If the fatigue, balance and brain porridge resolve, I'll be game for it, I think (not for 6 months though).

I have safely taken huge doses of Vit. D3 to kill what ails me - 50,000 IU in a go, and it killed an oncoming "flu". (I am not a doctor, but do know that 10 minutes of full body exposure to sunlight is 26,000 IU equiv.). Grapefruit seed extract is def. good for stomach stuff - and acidophilus and bifidus too.

I hope Dr. Simka can take a look at you.

All the best!
My name is not really Johnson. MSed up since 1993
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Postby ErikaSlovakia » Sat May 15, 2010 10:41 pm

Johnson wrote:I have to say that I am envious of your luncheon with Erika. I offered to buy her lunch quite a while ago. (I still might get there, Erika. I hope your trip to meet esta didn't tire you.)...

I am still waiting! :wink:
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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