Just back from Poland with Dr Kosteki

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

Re: ccsvi

Postby ndwannabe » Thu May 20, 2010 10:34 pm

Drury wrote: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.
Drury


Thanks for the well wishes Drury!
User avatar
ndwannabe
Family Elder
 
Posts: 290
Joined: Sat Jan 02, 2010 3:00 pm
Location: SF Bay Area, CA

Advertisement

just back from Poland with Dr. Kostecki

Postby grammastang » Tue May 25, 2010 1:54 pm

Hi Patches,
It is Lynda "the trouble maker" from our group. How are you and your lovely wife "bless you" doing? Good to hear everyone made it home after their time in Poland. Seems like each of us had there own issue, whether it would be the volcano ash, passports, flooding or airline mishaps, we all found our way back home safely.
Thanks to Kate for the great informative post. It really tells it like it is for all the people setting off on their "libertion" adventure.
So far between my family, friends and I the following subtle changes have been noticed.
warm hands and feet
less waves of fatigue
better colour
stronger voice
stronger right hand
better coordination
can hold a pen and write my signature
right hand dosen't shake as much
spasms seem shorter and not so intense
That is it for now, soooo.....all I can suggest is "relax" so you can enjoy all the subtle changes that are happening.
Cheers!!! :lol: :lol: :lol:
Lynda
User avatar
grammastang
Family Member
 
Posts: 37
Joined: Wed Jan 20, 2010 3:00 pm
Location: Vancouver BC Canada

Re: ccsvi

Postby alby » Tue May 25, 2010 2:59 pm

alanbrowne wrote:
maureen196113 wrote::lol: 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. lol


Alan i have a stent in my azygos vein, and dr. ludyka told me blood thinner between 2 to 12 months, and aspirin for life, now i am totally confused! what should i do, blood thinner for life or aspirin for life?
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm

Postby AMcG » Wed May 26, 2010 3:05 am

Alby

I wondered about this too. So I asked my doctor. There are two types of stent: plain metal and drug-eluting stents. In the UK the recommendation is six weeks of blood-thinners for a bare metal stent and 12 months for an eluting stent. So you need to know which kind you have.

I had heard someone say on TIMS that Euromedic used cobalt in which case six weeks would be right. But I suppose they could have changed. You really need to find out which you have.
User avatar
AMcG
Family Elder
 
Posts: 205
Joined: Thu Dec 31, 2009 3:00 pm
Location: UK

Postby Vhoenecke » Wed May 26, 2010 3:52 am

Wow,
Another great place to go, I am so happy for everyone!
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

Postby mila77 » Wed May 26, 2010 5:34 am

AMcG wrote:I had heard someone say on TIMS that Euromedic used cobalt in which case six weeks would be right. But I suppose they could have changed. You really need to find out which you have.


AmcG,

Euromedic uses Nitinol stents which is an alloy of nickel and titanium so I guess it classifies as bare metal stent.

Mila
User avatar
mila77
Family Member
 
Posts: 89
Joined: Fri Feb 12, 2010 3:00 pm
Location: Warsaw, Poland

Postby Billmeik » Wed May 26, 2010 6:07 am

I wondered how it went for you grammastang. Good to hear its fine.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

Re: just back from Poland with Dr. Kostecki

Postby alanbrowne » Wed May 26, 2010 7:50 am

grammastang wrote:Hi Patches,
It is Lynda "the trouble maker" from our group. How are you and your lovely wife "bless you" doing? Good to hear everyone made it home after their time in Poland. Seems like each of us had there own issue, whether it would be the volcano ash, passports, flooding or airline mishaps, we all found our way back home safely.
Thanks to Kate for the great informative post. It really tells it like it is for all the people setting off on their "libertion" adventure.
So far between my family, friends and I the following subtle changes have been noticed.
warm hands and feet
less waves of fatigue
better colour
stronger voice
stronger right hand
better coordination
can hold a pen and write my signature
right hand dosen't shake as much
spasms seem shorter and not so intense
That is it for now, soooo.....all I can suggest is "relax" so you can enjoy all the subtle changes that are happening.
Cheers!!! :lol: :lol: :lol:
Lynda


Hi Lynda,

Glad you got back safe and sound, can't believe it's nearly 2 weeks since we had the procedure !!
I'm still feeling good, over did it last week and needed a day in bed, but that was just me being cocky I think :D

Fatigue seems to be getting better every week, so that's good, walking also seems a little better, but will wait and see.

Keep us posted on how you're getting on and say hi to Jan for us.

Take care,
Alan
User avatar
alanbrowne
Family Member
 
Posts: 78
Joined: Mon Feb 15, 2010 3:00 pm
Location: Milton Keynes, UK

Postby alby » Wed May 26, 2010 12:45 pm

mila77 wrote:
AMcG wrote:I had heard someone say on TIMS that Euromedic used cobalt in which case six weeks would be right. But I suppose they could have changed. You really need to find out which you have.


AmcG,

Euromedic uses Nitinol stents which is an alloy of nickel and titanium so I guess it classifies as bare metal stent.

Mila


thank you all for the info, now i feel better.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm

Postby mila77 » Wed May 26, 2010 1:02 pm

alby wrote:thank you all for the info, now i feel better.


Alby,

I am just wondering, Didnt you get your stent certificate? I got something like this, where it says what kind of stent is it and all the details and I am supposed to wear it on me all the time, just in case something happens like and acctident or something, so that doctors know that I have stent in mu jugular vein.

Mila
User avatar
mila77
Family Member
 
Posts: 89
Joined: Fri Feb 12, 2010 3:00 pm
Location: Warsaw, Poland

Re: just back from Poland with Dr. Kostecki

Postby Googlie » Wed May 26, 2010 2:07 pm

grammastang wrote:Hi Patches,
It is Lynda "the trouble maker" from our group. How are you and your lovely wife "bless you" doing? Good to hear everyone made it home after their time in Poland. Seems like each of us had there own issue, whether it would be the volcano ash, passports, flooding or airline mishaps, we all found our way back home safely.
Thanks to Kate for the great informative post. It really tells it like it is for all the people setting off on their "libertion" adventure.
So far between my family, friends and I the following subtle changes have been noticed.
warm hands and feet
less waves of fatigue
better colour
stronger voice
stronger right hand
better coordination
can hold a pen and write my signature
right hand dosen't shake as much
spasms seem shorter and not so intense
That is it for now, soooo.....all I can suggest is "relax" so you can enjoy all the subtle changes that are happening.
Cheers!!! :lol: :lol: :lol:
Lynda


Hi troublemaker,
It's nice to hear you are feeling some more improvements. I'm sorry we missed you at the airport in Calgary, our bags came off the carousel right away and we just flew out of there. Good thing too, as a friend was waiting there to take us home (a nice surprise).

I hope the rest of your journey home was comfortable. Please say hello to Jan for me and tell him that my local beer store sells Zywiec!

Randall
User avatar
Googlie
Newbie
 
Posts: 3
Joined: Wed May 19, 2010 2:00 pm

Postby vivavie » Wed May 26, 2010 2:09 pm

Hello AMcG,
On my discharge paper it says SMART sent only. I checked on the internet and SMART makes both type of stents. I email Dr. K 2 weeks ago but he did not answer yet... Since you were there at the same time as me I assume we have the same type, which is ???

There is only a Plavix dosage on my prescription, no duration. What does it say on yours?
Thank you. I hope you are still enjoying you Liberation!
User avatar
vivavie
Family Elder
 
Posts: 171
Joined: Wed May 05, 2010 2:00 pm
Location: QC, Canada

Postby alby » Wed May 26, 2010 2:09 pm

mila77 wrote:
alby wrote:thank you all for the info, now i feel better.


Alby,

I am just wondering, Didnt you get your stent certificate? I got something like this, where it says what kind of stent is it and all the details and I am supposed to wear it on me all the time, just in case something happens like and acctident or something, so that doctors know that I have stent in mu jugular vein.

Mila


i got a piece of paper saying the type of stent and the name of the blood thinning drug, and aspirin 150mg. i didn't know with some types we don't need thinners for life, although dr. ludyka said two months is enough, that was early feb. of this year. he DID NOT SAY that i HAVE TO KEEP IT WITH ME ALL THE TIME, and he didn't say where the stent is located at other than it''s in azygos!!!!!!!!

(i miss poland, love to go back again as tourist.)
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm

Re: just back from Poland with Dr. Kostecki

Postby vivavie » Wed May 26, 2010 2:17 pm

... tell him that my local beer store sells Zywiec!

Randall[/quote]

Lucky you I LOVE ZYWIEC! We don't have in Qc...
(I know I'm no a Lady, I like beer!!! )
User avatar
vivavie
Family Elder
 
Posts: 171
Joined: Wed May 05, 2010 2:00 pm
Location: QC, Canada

Postby alby » Wed May 26, 2010 2:20 pm

vivavie wrote:Hello AMcG,
On my discharge paper it says SMART sent only. I checked on the internet and SMART makes both type of stents. I email Dr. K 2 weeks ago but he did not answer yet... Since you were there at the same time as me I assume we have the same type, which is ???

There is only a Plavix dosage on my prescription, no duration. What does it say on yours?
Thank you. I hope you are still enjoying you Liberation!


vivavie, those guys in poland do a good job, but unfortunately are not methodical, disciplined, or organized as much as we are here. i contacted them for my stent location three times and never heard back from them with a proper answer, they just said it's in axygos which i was told in poland aready, so i assume they are too busy but that shouldln't be an excuse, especially when we don't live in poland. so someone told you to have that info with you all the time? who? i am kind of confused this dr. k ispart of ludyga team or different? are there now two different and independent clinics doing this work? if so do dr k's team have a website? i searched through and couldn't find any.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: mystery1980


Contact us | Terms of Service