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

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

Postby mags4short » Fri May 07, 2010 1:19 am

Hi all,
A quick update as I am just back at the hotel after the procedure.

Yesterday was a long day as we had no breakfast and could not eat until 6 hours after the procedure!!

8 am picked up from the hotel, taken to the hospital. There we were asked to complete lots of paperwork, consent forms etc. Then we had blood tests before being taken in to a small side room with three beds.

I shared a room with Esta and Markus77. We all had to wait our turn but I was taken into the procedure room about quarter past one. The whole thing took about 3/4 hour but to be honest I felt that I had only been in there for about 10mins, may have been something to do with the stuff that was going up my nose, it was lovely :)

All was very painless, just felt a slight pressure in my neck near to the end.

I had angioplasty to the left juggler.

Did not sleep much last night. Not sure if that was because I was in a strange place and was not comfortable, or if that was due to Markus making noises all night, I am sure he will blame my snoring for keeping him awake, but do not believe a word of it :)

Anyway, I am tired and a little stiff around my neck and shoulders so will go off and get some sleep.

I will update soon when my head is working a little better.

Mags xx
Alone we can do so little, together we can do so much :)
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Postby Zeureka » Fri May 07, 2010 5:02 am

Rest well - and sweet dreams Mags! Hope your neck will be better when you wake up...guess hotel room more comfortable and less noisy now :wink:

And in coming weeks, may some of your dreams come true! :)

Thanks for keeping us updated!
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Postby mags4short » Fri May 07, 2010 9:50 am

Zeureka wrote:Rest well - and sweet dreams Mags! Hope your neck will be better when you wake up...guess hotel room more comfortable and less noisy now :wink:

And in coming weeks, may some of your dreams come true! :)

Thanks for keeping us updated!


Thanks Zeureka :)

I did not manage to get much rest, decided to go and find somewhere to eat tonight, found an english speaking bar and stayed for one or two.

Managed to walk there and back without having to stop for a rest, maybe a sign of things to come, although I am on auto pilot at the minute, so maybe tomorrow will be a better indication.

I am a little shiverish at the moment and am hoping that I have not picked up a UTI from the catheter last night!

We are surrounded by Canadians here, I will have the accent before we leave ;)

Time to get ready to go eat.

tomorrow is another day, hopefully one filled with energy... well here is hoping :)

Mags x
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Postby ndwannabe » Fri May 07, 2010 3:58 pm

Hoping for great improvements for you Mags! Thanks for the update :)
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Postby Rialynn » Fri May 07, 2010 4:36 pm

mags4short wrote :

"We are surrounded by Canadians here, I will have the accent before we leave "



LOL Have a good one EHHH. Hope all is great beginnings in the morning [/quote]
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Postby mags4short » Sun May 09, 2010 1:57 am

Hi all,

Just a quick update as we are off out for the day today.

Yesterday I had a visit from an independent neurologist. He was a lovely guy who visited me in the hotel room. He did not ask many questions just asked me to walk a few steps, checked my arm,which is feeling as if it is someone elses at the moment and told me to wait for approx 3 months to check for improvements. I mentioned that I had a water infection after the catheter and he gave me a prescription for some antibiotics. Hopefully this will nip the infection in the bud and stop me getting a full blown relapse, which is the usual when I get infections.

Having said that I am trying to be realistic and not expecting too much sop early in the day, BUT it is hard not to keep looking for subtle changes. My feet are still warm and pink, I am sleeping well and am up at 7 and down for breakfast each morning and am able to hold a conversation without there being a time delay in my responses. Does that make sense to anyone? It is hard to explain but I think that it takes my brain a while to catch up before I can put my mouth into gear :)

Anyway, better go and see what the rest of the day brings.

Just met Sunlounger in the restaurant for breakfast along with Markus77. We said goodbye to Esta and co as they are off this morning, but we are looking forward to meeting more people this evening in Sky bar!

Just hope the ash cloud behaves so that we can get home on Tuesday.

Speak soon,

Mags xx
Alone we can do so little, together we can do so much :)
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Postby Johnson » Sun May 09, 2010 2:37 am

Thanks for the update, Mags, and congratulations! Not on the UTI, sore neck and shoulders, but you know...

Man, I hope I feel like going to breakfast, and going out for the day.

I'm watching that ash cloud too. I hope it doesn't delay you, or anyone on the way. If it keeps up, I might head for North Africa, or come from the East. The steppes will be in bloom, it might be a nice drive from Vladiflippingvostok. Let's hope it doesn't come to that!

All the best, and continued improvements.
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Postby Mutley » Sun May 09, 2010 11:49 am

Hey Mags, thanks for the update. It was great to meet you and Nigel and I really hope that things are looking up for the better for you. Have a safe journey home.

Mark x
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby mags4short » Wed May 12, 2010 2:05 am

Mutley wrote:Hey Mags, thanks for the update. It was great to meet you and Nigel and I really hope that things are looking up for the better for you. Have a safe journey home.

Mark x


Thanks Mark,

Yes it was great to meet you too. I hope that you are finding some positive changes happening, or at least no negative ones?

We got back yesterday and I am going to rest up for a while, what a week :)

Take care,

Mags x
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Postby mags4short » Wed May 12, 2010 2:09 am

Johnson wrote:Thanks for the update, Mags, and congratulations! Not on the UTI, sore neck and shoulders, but you know...

Man, I hope I feel like going to breakfast, and going out for the day.

I'm watching that ash cloud too. I hope it doesn't delay you, or anyone on the way. If it keeps up, I might head for North Africa, or come from the East. The steppes will be in bloom, it might be a nice drive from Vladiflippingvostok. Let's hope it doesn't come to that!

All the best, and continued improvements.


Thanks Johnson,

I think that I caught the UTI in time :)

Luckily the ash cloud behaved on our way home and we made it back safely. Now hoping that it does not effect you or others who are heading for Poland.

Good luck,

Mags x
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Postby Johnson » Wed May 12, 2010 2:21 am

Thanks Mags. I booked my ticket today, and also looked at Vancouver-Tokyo-Moscow-Krakow. Just in case. It would be a brutal trip though.

I'm glad you got home alright.
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Postby markus77 » Wed May 12, 2010 2:42 am

hey mags,

meeting you and Nigel was great. you 2 made the trip more pleasurable for my bro and i. our day trip to Auschwitz concentration camp was really fun. I was surprised my scooter made it through the whole day.

i have seen some subtle changes. i was out for 5 hours (no scooter) yesterday and usually be then my lower back is killing me but not then. after an hour of sitting when i stand up i usually have to stretch for a minute or 3 before i get walking but that seems to have disappeared. i have stiffness and leg tremours in the morning. that has decreased by at least 50%, i have also noticed my speech has improved, as in the pronunciation of words. i went to the chiro yesterday and he mentioned right off that my walking has improved. i am not so tense when i walk. i am more lose and my walk is more fluent. he was excited at what he saw and if you are wondering i did not have him crack any part of my body. we just walked and talked a bit.

p.s. and do not try to blame your sleepness night on my texting and grunting either.......if i was anymore quiet i would have been in a coma.... ; )
Last edited by markus77 on Wed May 12, 2010 2:51 am, edited 2 times in total.
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Postby mags4short » Wed May 12, 2010 2:45 am

A quick update before I start unpacking :)

We set off from Poland yesterday at 8 which is 7 our time. Did the airport, flying and arrived back to the car to find a flat tyre! After a delay of a couple of hours until we got that sorted we headed home and arrived at 4.30PM.

Went for something to eat with family, then at 7.30 I had arranged to meet a few MSers in the local to give them an update on Poland. I left there at 11.30 PM by which time I was TIRED but not EXHAUSTED/ fatigued.

Previous to this I would have needed to lie down after the airport never mind anything else!!! Now maybe I am still on a high, maybe it is the placebo effect, maybe the blood thinners are doing strange things, maybe, maybe maybe. I do not have a clue. All that I can say is that the fact that I went to Poland, was told maybe they could do something about it. Met some wonderful people and experienced a shared sense of hope with others in similar situations. This in itself has been something that I would not have dreamed of 18 months ago. So at this moment in time I can say it was worth every penny.

The whole thing was well organised and Euromedic are working on making things easier for overseas patients, this will all take time and they have come a very long way in a very short space of time too.

For myself all that I can do is be patient, I still have a UTI, problems with my arm and shoulder and a few other things, but these things are nothing new to me. I am hoping that they will ease off and that I will notice more improvements as the days progress.

I will give it a few days then post on the tracking thread and keep a close eye on everything. I am expecting highs and lows for a while and it will be interesting to see where I am in three months time. If I am still in the same place then it will be a result as it would mean that I have not gone downhill and stayed there :)

Here's hoping that this renewed energy stays put...

Mags x
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Postby mags4short » Wed May 12, 2010 3:00 am

markus77 wrote:hey mags,

meeting you and Nigel was great. you 2 made the trip more pleasurable for my bro and i. our day trip to Auschwitz concentration camp was really fun. I was surprised my scooter made it through the whole day.

i have seen some subtle changes. i was out for 5 hours (no scooter) yesterday and usually be then my lower back is killing me but not then. after an hour of sitting when i stand up i usually have to stretch for a minute or 3 before i get walking but that seems to have disappeared. i have stiffness and leg tremours in the morning. that has decreased by at least 50%, i have also noticed my speech has improved, as in the pronunciation of words. i went to the chiro yesterday and he mentioned right off that my walking has improved. i am not so tense when i walk. i am more lose and my walk is more fluent. he was excited at what he saw and if you are wondering i did not have him crack any part of my body. we just walked and talked a bit.

p.s. and do not try to blame your sleepness night on my texting and grunting either.......if i was anymore quiet i would have been in a coma.... ; )


Heyyyyyyyyyy Markus,

I was just about to email you... will do later.

Yes it was great meeting the two of you, we had some laughs ( which helps). Great news about the walking!!!!!!!!

That on top of your renewed ability to put your fingers together without a tremor is HUGE to say it has only been a few days, just think about the future, lets hope that it all continues xx

Yes I forgot to warn people about being in the next bed to a grunter, headphones or earplugs are a must :)

Thanks for your company, we had a great time.

Keep me posted about your progress.

Mags xx
Alone we can do so little, together we can do so much :)
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Postby mags4short » Sat May 15, 2010 2:46 am

Just a little update...

One week post procedure.

I have just finished my injection and antibiotics.

My left arm seems to be recovering slightly as I have less pain and more sensation in it, I hope that this continues.

I felt really really tired last night and my first thought was oh dear, I haven't felt like this all week, maybe things have gone back to their old ways, but then I remembered what a week I had had, I have never stopped and just maybe everything was catching up with me. I suppose this will be the norm for a while. Here is hoping that it is just normal tiredness :)

Apart from that, my balance is still good, my hands and feet are still warm and my head feels like someone has switched the light on. Things are clearer somehow.

I am just trying to avoid any kind of infection at the moment as I know that they tend to send me downhill.

I keep telling myself ... give it time, lets just see, but in reality I want lots of improvements NOW :)

I keep looking for inspiration and found this ...

Patience is bitter, but its fruit is sweet. (Jean Jacques Rousseau)

So let's see how things go.

Mags x
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