Just back from Poland with Dr Kosteki

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

Postby alanbrowne » Wed May 19, 2010 1:05 am

ndwannabe wrote:Thank you so much Alan! I am flying to Poland (Dr. Kostecki as well) this Saturday.

"Jittery" does not really describe how I feel, so reading posts like yours is now even more reassuring than before.

Hoping for ongoing improvements for you!

PS. I am a little unclear about the deal with your left jugular... Are you saying their protocol only allows them to use one stent?


Hi,
Yes, they will only use one stent as it is obviously still experimental.
They ballooned my left and it was better then before, so I'm happy with that.
Everyone is nervous, I was a bit of a wreck on the Friday morning, but there is really nothing to worry about, they put you at ease and the procedure is fine, you can't really feel anything and it's over quite quickly.
Good luck,
Alan
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Postby alanbrowne » Wed May 19, 2010 1:08 am

maureen196113 wrote::lol: I'm so so happy for you. I was worried about getting stents.But when i hear about more people having them. I think it relax's me. Are we put on blood tinners if we have to have treatment. Or is this something that is done after treatment? take care now,,,, rest up and keep posting lol


Hi,
I too was worried about stents, but if there is anywhere in the world I would have themn it is Poland, they are very experienced there.

You are put on blood thinners a few days before the procedure, then if you have a stent you are on them for life, you also have to inject yourself for 14 days after, this is not as bad as it sounds as you get used to it very quickly.

Alan
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Re: Poland

Postby alanbrowne » Wed May 19, 2010 1:10 am

caraboo wrote:Hi Alan,


I am so happy for you, been thinking about you this week.
So excited for you for the improvements you are getting :D :D :D
Long may they continue :D :D :D :D :D :D
Im getting so excited now, fly on Sunday at 7am, hope that bloomin ash
cloud stays where it is.

Take care

Karen


Hi Karen,

Was also thinking about you !!
Try not to worry too much, they look after you very well and really know what they are doing, say Hi to Katherine for me :D

The very best of luck to you, and please keep me updated to how you get on.

Take care,
Alan
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Postby 1_sindy » Wed May 19, 2010 8:08 am

Hi Alan glad you are doing well and thanks for the post,we go there in june as well and it is nice to hear from others that have been there. i wish you the best.Sindy
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Postby Asher » Thu May 20, 2010 7:26 am

Finally, I'm on for end June with Dr. Kosteki (definite date yet to be confirmed). I'm so excited. This literally kept me going in the past year. I am realistic, but I can't hide my excitement and hi hopes.

Thank you all for your accounts. They are a source of inspiration, knowledge and comfort.

I am going to ask my beloved wife to take a video of the before and after so that we can post it on TIMS. :D
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Here's some more -

Postby StentorKate » Thu May 20, 2010 7:27 am

I am the Canadian Kate of Kate and Randall that Alan speaks of.
We want to add a bit more info
First I agree with what Alan said about the Polish teams - the Doctor's and nurses were excellent (except for one - Nurse Ratchet, we called her ... she was a little rough) and Katherine 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 and honour to met 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, 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.

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.

____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.
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 them! - BUT it is not always available, 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 Randall 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"

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)and I'm able to walk backwards. Noticing some improvements daily but will not be prepared to evaluate until a month has passed. The day before the tsting started I had Randall film me walking, doing stairs and all the usually neurological tests - (eye 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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Postby Asher » Thu May 20, 2010 7:35 am

StentorKate, this couldn't have come at a better moment. I am deeply grateful for you post. I read it 3 times with a big smile on my face. :)
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In Poland with Dr Kosteki

Postby MartinHalford » Thu May 20, 2010 7:45 am

How can I make an appointment to have this treatment done in Poland with Dr Kosteki? What are the entry criteria? I have tried without success to have the scan done in the UK (despite paying for the consultation).
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Postby Asher » Thu May 20, 2010 7:55 am

Dear martin, just mail Katherine Franek at biuro@europanostra.com.pl and express your interest. She will replay pretty quickly. good luck, Asher
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Postby 1_sindy » Thu May 20, 2010 8:25 am

Asher what days are you booked for my husband is there june 23to 30th .Sindy
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Postby vivavie » Thu May 20, 2010 9:01 am

Stentorkate! I agree 100% with everything you said! I, too, had a wonderful encounter with the Tychy team at the end of April.!
After my stent Dr K prescribed the Plavix for 6 WEEKS only. Here in Canada my GP said I should take it for ONE year. Dr K never answered my emails on that subject - it's ok I prefer him healing patient...
It seems that he changed his cocktail. Now the problem will be to find a GP that will prescrib the Plavix here (CDN). GRRRRRRRRRR
Can't read enough of those nice stories:)
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Postby Asher » Thu May 20, 2010 11:03 am

1_Sindy, not sure, Katherine mentioned end June in her mail. I guess I'll know more by tomorrow. Will keep you informed.
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Postby Whitey » Thu May 20, 2010 11:18 am

StentorKate - Thank you for your information and account! The information is very helpful for those of us excited to see Dr. Kostecki in the near future!

You should copy this post into the "Dr. Jacek Kostecki" thread, so that more people will stumble on it.

*Cheers*

- Dave
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ccsvi

Postby maureen196113 » Thu May 20, 2010 1:03 pm

Billmeik, Have you a link for that paper (Simka) Thanks
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ccsvi

Postby Drury » Thu May 20, 2010 6:12 pm

Alan so happy that you have had a positive result and wish you all the best for continued improvements and ndwannabe wish you a safe journey and hope you get terrific results too.
thanks to both of you for your help.
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