Mags is off to Poland!!!!!!!!!!!

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

Postby esta » Sat Jul 10, 2010 2:34 pm

hi margaret!!!!!!!!
wonderful to hear from you...i have a feeling for the rest of our lives we will always ponder about restenosing...even after stenting i bet..
anyway, yes i have heard from them, for a rescheduling date in august sometime re my restenosing.
i lost everything that i had gained within 4 weeks, so i can only judge that would be a clear clue but if you still have warm feet, things must be flowing...
my thing now is reading livabird's restenosing and her going to bulgaria re her azygos veins. mine were fine they said, but now i wonder...since i have ppms. zamboni said in 86% of his patients there was something wrong. yet, my ljv was good, so maybe the azygos is. i checke my dvd and it appeared fine, but who am i to judge.
today i have decided to ask them to really ck it out this time.
anyway, as for follow-up i was never told, soooooooooo...
say hi to nigel! i really am glad you're doing ok??? it sounds good in the scheme of things really. up, down, two forward, one back and all that!!
hey, scotland's on board now, i met the drs when i got my 2 week chk up (because i was there). they were pumped about it all.
even then it wasn't good, but i was still improving then...strange.
keep in touch!
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

Advertisement

Postby mags4short » Wed Jul 14, 2010 11:08 pm

Hi Esta,

Good luck in August, keep me updated :)

I am going to have a break from everything here and see if some R & R will help. But at the same time I will be trying to get hold of the clinic to see about a checkup.

You take care of yourself and let me know what date in August you are going.

Mags x
Alone we can do so little, together we can do so much :)
User avatar
mags4short
Family Elder
 
Posts: 124
Joined: Thu Jan 07, 2010 3:00 pm
Location: UK

Postby esta » Thu Jul 15, 2010 8:26 am

hi margaret
August 24th. that's my check up date with dr. Simka...i have to compile a list of question...like the azygos vein discussions going on here.
have a nice R&R wherever you go. ever thought of conacting the Glasgow team? i think i'd stick with simka, becauseyour next step would be a stent i should think...
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

Postby mags4short » Sun Sep 26, 2010 4:00 am

Haven't been on here for a while as life keeps getting in the way.

Anyway, I am coming up to 5 months post lib and thought I would check in again. My balance issues are still better than they were and my feet are still warmer, but I am having problems with numbness on my left side and the fatigue seems to be more of an issue these days.

That being the case I am now wondering wether to go to Glasgow for the doppler etc, just to see what they say, then take it from there, or going back to Poland.

I have been in touch with both and am waiting for appointments, so it may be just a case of whoever can fit me in first.

Does anyone have experience of the Glasgow teams initial checks?

Mags
Alone we can do so little, together we can do so much :)
User avatar
mags4short
Family Elder
 
Posts: 124
Joined: Thu Jan 07, 2010 3:00 pm
Location: UK

Postby esta » Sun Sep 26, 2010 7:26 am

great to hear from you mags!!!!!!!!!
i even met the dr from there when we went back for a ck up in may...! i'm sorry i have no experience with glascow, except he'll try to get you on LDN, because that's his forte.
if its free, i'd go for it for sure for the doppler to ck out the ol' veins.
i've had my stent for a month, and lots has changed for the good, and i was wwwaaaayyy worse than you!
good luck!!!!!
esta
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

Postby Coolcatcarrie » Sun Sep 26, 2010 12:12 pm

Hi mags
This is my first post here, read ur post and thought would share my Glasgow experience! I went for scan in august, the guy that does the scanning was very good and had been for training with zambonis team in Italy, I then saw dr gilhooly who was fantastic and I got more out of him than any appointment I've ever had with my neurologist! He didn't push Ldn at all I brought it up towards the end of my appointment as I had heard good things about it, so I went for it and again it's done so much more for me than anything my neuro has offered! Lol. I was found to have ccsvi and I am on the list waiting to be treated, I had two appointments in other countries in reserve incase they didn't find ccsvi but they did so I cancelled and I felt in good hands with the ehc! Sorry to go on! Heehee but im v excited! :D
User avatar
Coolcatcarrie
Family Member
 
Posts: 79
Joined: Sun Jun 20, 2010 2:00 pm
Location: Near Bath, UK

Postby mags4short » Mon Sep 27, 2010 12:08 am

Coolcatcarrie wrote:Hi mags
This is my first post here, read ur post and thought would share my Glasgow experience! I went for scan in august, the guy that does the scanning was very good and had been for training with zambonis team in Italy, I then saw dr gilhooly who was fantastic and I got more out of him than any appointment I've ever had with my neurologist! He didn't push Ldn at all I brought it up towards the end of my appointment as I had heard good things about it, so I went for it and again it's done so much more for me than anything my neuro has offered! Lol. I was found to have ccsvi and I am on the list waiting to be treated, I had two appointments in other countries in reserve incase they didn't find ccsvi but they did so I cancelled and I felt in good hands with the ehc! Sorry to go on! Heehee but im v excited! :D


Thanks for the reply, how are you finding LDN? I have been thinking about this for some time and have heard all sorts of stories. Did you get the script there? How is it suiting you?

Good luck with the appoinment.

Mags x
Alone we can do so little, together we can do so much :)
User avatar
mags4short
Family Elder
 
Posts: 124
Joined: Thu Jan 07, 2010 3:00 pm
Location: UK

Postby Coolcatcarrie » Mon Sep 27, 2010 2:27 am

Hi
Yep I get my script from there, I decided I would try LDN because of the good things I heard about it and nothing to lose just by giving it a go! After three days of taking just 1ml I noticed a big difference with my balance! Also I can take it along with my beta inteferon injections and I plan to get to the right level of LDN and then get off beta for sure! I don't get tierd but apparently it is real good for that too!
I am feeling extremley positive that fixed veins (when I have them fixed!) and LDN will fix me! :D All the best if you decide to go for LDN! Carrie :D
User avatar
Coolcatcarrie
Family Member
 
Posts: 79
Joined: Sun Jun 20, 2010 2:00 pm
Location: Near Bath, UK

Going again

Postby mags4short » Thu Oct 14, 2010 1:21 am

Hi all,

I have just received an appointment to go back for a check up in Poland. I will be going on the 2nd Dec and if I need a second procedure that will be done on the 3rd.

I am still a lot better than I was, balance still better and tremor a lot less. Feet still warm, but the cog fog returned after about 6 - 8 weeks and the balance went slightly off. I am not complaining at all and to be honest I am happy with the way things are... BUT as I had experienced the lifting of the fog and less fatigue I want that again, more of it if I can.

I will try once more and see how things go and will keep you updated.

In the meantime I have just set up a counselling service for people with MS and their families/ friends etc. I think that there is a real shortage of emotional/psychological help out there. It is very early days yet, but I hope that it will be of benefit to local people initially and hopefully... if I get more energy I can expand the service in the future :)

Wish me luck.


Mags x
Alone we can do so little, together we can do so much :)
User avatar
mags4short
Family Elder
 
Posts: 124
Joined: Thu Jan 07, 2010 3:00 pm
Location: UK

Postby ClaireParry » Thu Oct 14, 2010 3:49 am

Hi Mags,

Glad you are going back. Me too!! 3rd November.

I've been in touch with someone over there at the moment and it seems the Euromedic team have made some real improvements. For example, they are starting the operations earlier in the day and only making you lie down for 6 hours.

Also, they are checking the Azygous and doing a discharge Doppler the morning after.

Can't wait!!! :D
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Postby ClaireParry » Thu Oct 14, 2010 3:51 am

PS. your counselling service sounds great. bet your not local to me though :(
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Postby esta » Thu Oct 14, 2010 6:54 am

hi mags
yeah, a date. Ohhh the fog...gone is best!!!
it always seems forever, but it's not that long really is it. what a lovely xmas present.
i love what clareparry said, no overnights. i know i swore i'd never go back if i had to again. buuuuuutt, i have a tailbone problem. i got the doppler after when i went back, so the new 6 hr thing is a really great addition. you'll love the changes, and feel so confident.
good luck with the councelling sevice too, sounds fab. i wish our chapter had someting like that. we have suppor groups, i guess thats good too.
whatever happend with scotland?
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

Postby mags4short » Thu Oct 14, 2010 8:26 am

ClaireParry wrote:Hi Mags,

Glad you are going back. Me too!! 3rd November.

I've been in touch with someone over there at the moment and it seems the Euromedic team have made some real improvements. For example, they are starting the operations earlier in the day and only making you lie down for 6 hours.

Also, they are checking the Azygous and doing a discharge Doppler the morning after.

Can't wait!!! :D


Hi Claire,

Good luck in November, keep me updated, I want a blow by blow account :)

Sounds like things are progressing in the right way in Poland, I hope that they check and double check everything as I certainly can't afford to keep going back.

I look forward to reading your update.

Keep well,

Mags x
Alone we can do so little, together we can do so much :)
User avatar
mags4short
Family Elder
 
Posts: 124
Joined: Thu Jan 07, 2010 3:00 pm
Location: UK

Postby mags4short » Thu Oct 14, 2010 10:25 am

esta wrote:hi mags
yeah, a date. Ohhh the fog...gone is best!!!
it always seems forever, but it's not that long really is it. what a lovely xmas present.
i love what clareparry said, no overnights. i know i swore i'd never go back if i had to again. buuuuuutt, i have a tailbone problem. i got the doppler after when i went back, so the new 6 hr thing is a really great addition. you'll love the changes, and feel so confident.
good luck with the councelling sevice too, sounds fab. i wish our chapter had someting like that. we have suppor groups, i guess thats good too.
whatever happend with scotland?


Hi Esta,

Thanks I will let you know how I go on, at least I know what to expect this time :)

I still have my name down for Scotland, they have rung a few times with dates for a doppler etc, but it has always been last minute and I could not go. Part of me wanted to go back to Poland anyway, as I know that they are more experienced and I will feel more at ease.

I just saw your reply on another thread about Bingko ( can't spell) and blood thinners, is this correct? If so I had better stop taking them well before Poland... just in case :) Thanks for the heads up.

I hope that you and your lovely hubby are doing well, Nigel sends his regards,

Mags x
Alone we can do so little, together we can do so much :)
User avatar
mags4short
Family Elder
 
Posts: 124
Joined: Thu Jan 07, 2010 3:00 pm
Location: UK

Postby esta » Thu Oct 14, 2010 11:02 am

HI MAGS
yes, it was a dr. on the news, could cause a brain hemmorage was what he inferred. the warning was for mixing herbs and drugs.
you'll probably be on bloodthinners anda an aspirin fo a year if you get a stent. that's new too.... oh boy, better and better.
yes, hi to nigel too, good luck on the trip. i was in the ladies only room this time. its bette for everyone to sleep in the hotel that night. they'll keep the problematic ones.
i wonder about cathetizing? probably, no mving for 6 hrs
don't forget the antibiotics... i took mine right away so i wouln't ge a bladder infection, didn't wait for any symptoms. this time.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Mato


Contact us | Terms of Service