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PostPosted: Thu May 20, 2010 1:23 pm 
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Location: Calgary, Alberta CANADA
Just got back yesterday - had the procedure May 15. Here's a bit of added info.

It is important when talking to airlines, and other officals that you do not state that you are going for SURGERY - if necessary mention "procedure", but it's best to say you're going for pleasure. They get quite nervous if you mention surgery.

The Doctors and nurses were excellent (except for one - Nurse Ratchet, we called her ... she was a little rough) and Katherine (the logistic co-ordinator at Europa Nostra Travel) and her team of drivers were great. Dr. K and Katerine worked endless hours, always with a smile and a sense of humour.

Dr K. is apparently in his early to mid 40's - easily looks 20 years younger, has a firm handshake, a quick smile, a wicked and dry sense of humour and boundless energy - he was working 12-14 hours a day. He understands English quite well, but is very deliberate and thoughtful in his speech. I very much look forward to working with him in the future and providing the information he needs for his research project. It was truly an honour to meet him - he's probably the most selfless person I've ever met.

____ VERY IMPORTANT _____

Ensure you have your full medical history, all drugs and prescriptions, all previous procedures - write it down including dates, dosages etc.

They need to know if you have metal in your body (implants, pacemaker, staples, plates etc) hepatitis, any other blood disorders - just ensure you have complete information - surprises slow down the procedures, so make sure they know what they need to know.

____RESEARCH_______

Back to Dr K. and his team: As Dr. K. is doing research, he wants to ensure his info is pure so he doesn't want to influence what he sees or thinks with previous information. That's why it seems as though he is not asking a lot of questions.

This is also why someone else does the MRI, a third person does a neurological consult (I would go to this neurologigist again! - he was unbiased and non-judgemental)

They do not compare info until the end.

Dr. K assists Dr. Kuczmik with the venogram and angioplasty. Dr Waclaw Kuczmik is the best Polish interventional angiologist and vascular surgeon -he is the head of Vascular surgery and has very good credentials - also his English is good. I was ballooned 4 X on my left side before they suggested a stent - if it's not necessary, they won't put it in. The procedure lasted 35 minutes and was not painful, but there were some interesting sensations.

This group also is studying people with the blockages but no MS, so what ever the outcome of your procedure, you'll be putting more info into the "pot".

______MEDS___________

After the procedure, if a stent is placed, you will be on low dose aspirin (blood thinners) for the rest of your life, Plavix - daily for year and 14 (once a day) doses of Clexane. Prepare to be bruised for a while.
The one girl in our group just had the angioplasty and did not need the aspirin or Plavix, but still needed the 14 doses of Clexane.
As Dr. K. explained the angioplasty can cause some trauma to the inside of the veins and they want to make sure no clots form while the veins are healing.

____While you're there and between tests _____

Get away from the hotel, go to a restaurant, get a change of scene. There are sites that are close by and Katherine can arrange these outings for you. The castle at Pszczyna is very nice and the town it is in is quite lovely.

During nice weather Hotel Arena has a small outdoor garden space that you can use. We were able to sit there a read one day before the rain started again.

Be warned that the Salt Mines in Krakow can be an issue. They do have a lift to take you down if you are not able to manage the stairs - and there are a lot of stairs! - BUT the lift is not always available(and there is no way to check before you go), and if it is, it costs extra. The lift was not available on the day we went so I spent a rather cold 2 hours sitting in the office and my husband went down. - (kind of a bummer)

The city tour in Krakow on a larger golf cart type of vehicle was fine and we saw a lot.

As a restaurant in Tychy, we all recommend PACOS - small but comfortable and Beef Stroganoff is to die for - it's served as an appetizer, but don't be fooled - order it with a serving of rice and you'll experience a "party in your mouth"
We found the food everywhere to be very good, fresh and inexpensive.

For the travelling companions: talk to those around you, you're probably all going through the same emotions.

__ Expecations and After __________

To end - I went in with realistic expectations - was hoping to get the feeling in my hands back, my swallowing under control, improve my bladder control and get warm hands and feet. Got all that plus less fatigue, better concentration, got rid of the L'hermitte's (electrical shock when you look down) I'm able to walk backwards and today I realized I can bend over and tie my shoes without falling on my face and with out sitting or kneeling on the floor. Noticing some improvements daily but will not be prepared to evaluate until a month has passed. The day before the tsting started I had my husband film me walking, doing stairs and all the usually neurological tests - (eyes closed finger to the nose, thumb touching each finger in turn with eyes closed, lying flat leg bent to the opposite knee, running foot down shin etc.) I will then film again after a month and every month after so I can truly judge my progress.


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PostPosted: Thu May 20, 2010 2:09 pm 
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Joined: Sat Jan 02, 2010 4:00 pm
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Location: SF Bay Area, CA
Congratulations and thank you for such detailed update! Ugh, Plavix for a year :(

Well, you gotta do what you gotta do.

Hoping for better and better improvements for you!

I am so scared... I am leaving in two days.


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PostPosted: Fri May 21, 2010 1:10 am 
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Joined: Tue Dec 01, 2009 4:00 pm
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Location: Ucluluet, BC
ndwannabe wrote:
Congratulations and thank you for such detailed update! Ugh, Plavix for a year :(

Well, you gotta do what you gotta do.

Hoping for better and better improvements for you!

I am so scared... I am leaving in two days.


Good luck nd. I'm sure that you will be in very capable hands.

_________________
My name is not really Johnson. MSed up since 1993


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