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Mutley goes to Poland, and returns home liberated.

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

Postby pgm1 » Sun Jan 10, 2010 3:28 pm

Hi Mutley
Thanks very much for all the updates and i hope the energy comes back i believe you will need all the energy you can get!
Congratulations to you and your wife. :)
Be well Mutley



Pam :)
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Postby Johnson » Sun Jan 10, 2010 4:17 pm

Thanks for the update, Mutley.

Congratulations, and best of luck with your new wee one coming. Babies are so wonderful (after all of the puking and screaming passes!)

A great resource is The Happiest Baby on the Block. I highly recommend it, even for experienced parents.
My name is not really Johnson. MSed up since 1993
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Postby annad » Sun Jan 10, 2010 4:54 pm

Good luck with it all, Mutley!!
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Postby shye » Sun Jan 10, 2010 5:11 pm

Thanks Mutley for all your sharing! Really helpful to know all the little details.

I was also intrigued about your mentioning that you need to now sleep differently, tht part of your problem could be how you position neck in sleep.

I've posted elsewhere about FINALLY getting phenomenal relief with chiro work on my Atlas, which was continuously rotated, and was getting no relief from other chiros or body workers til found this exceptional chiro.

But I also was never comfortable in any sleeping position before--aways woke up with neck and head ache, often severe, from the odd neck positions I ended up in.
Now, am learning to sleep on my back (not easy at all--and have some funny solutions that work most of the time)--and NO neck and head pain when wake up, and operating a million times better! (am also tilting my bed--really works! feeling now in feet and hands that didn't even realize was so lost before!)

Anyway, I degress--wishing you continued best of health, and I admire your courage in getting this done (as I admire everyone who has had it done), and am grateful for all your information--definitely we learn from these postings.
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Postby Brynn » Sun Jan 10, 2010 11:19 pm

Well, don't underestimate the stress of your life changes have in affecting how you are feeling. It is all wonderful, but you have overwhelming life stresses. All for the good, but there, none the less! Give your wife my very best! :D What wonderful things to look forward to, your continued healing and your other new miracle! Blessings, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Zeureka » Sat Jan 16, 2010 3:24 pm

Mutley, wish you good luck with your follow-up in the UK!!

I am only having a doppler with Simka Tuesday 19 Jan next week (since the waiting list for more is now already mid 2011...). I also intend to use the doppler results to try with the help of my generalist to get help from a venologist over here. Maybe wishful thinking :roll:, but you can only move on if you try :D !!

Thanks for info that Taxi from airport around 180 Zloty. To go I booked the Wizzair-Shuttle bus which takes you to the Katowice station (but admit I'm not in a wheelchair, so no problem to take the shuttle). To go back from Rolna to airport I may probably go by Taxi, since will not have much time...

For info on the latest status of Simka's procedure figures (he told me the following on the phone yesterday):

He has done the full procedure for 40 patients without any complications. In addition, he diagnosed CCSVI in 95% of MS patients that came to him. Huh, I wonder who the 5% are? I'm so curious to know if I'm one of the 95% ?

But don't worry, if Simka does not find anything or very little with me, I'm on a very low EDSS scale, so lets see if the degree of disability may relate to the extent of the vene problem... however, I have often fatigue and needles all day and night in my both hands and feet...+ my toes are partly paralyzed and feet stimes feel like insensible "socks". If that could somehow improve, it would be nice. Before, one just lived with it, since there wasn't much to do (except Swank diet and light exercise to keep circulation going) - but now there is a chance to do sthg!

Steffi
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Postby acol » Tue Jan 19, 2010 12:53 pm

Hi Mutley

Re your very detailed post about travel arrangements etc I was wondering what airline you used. As I understand things there are only 2 direct flights from the London Area - Ryanair from Stansted and Polish Airlines from Heathrow. The former group are not generally regarded as being 'disabled friendly'. From your report I get the impression that the airline did a good job? I would be interested to hear your views and those of anyone else who has flown to Katowice?
Nigel
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Postby ClaireParry » Tue Jan 19, 2010 1:00 pm

Hi,

I'm flying with Wizzair from Luton.

Claire
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Postby acol » Tue Jan 19, 2010 3:30 pm

Hi Claire

Thanks. I think that I can remember seeing Wizzair listed when I first tentatively, looked back in November. I certainly looked for a direct flight from Luton because this airport is quite convienient for me. However, for some reason I couldn't find a direct flight. Any chance you could give me a link to your booking site? To save me trawling back through the posts, when are you going?
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Postby Mutley » Wed Jan 20, 2010 2:42 am

Hello everyone,

I’m a dad again to a gorgeous baby girl, she’s perfect. I’m really really happy and only a little bit knackered :D :D :D

Right, I’ve got to be quick as I need to go and make some bottles up, so here goes:

Firstly, thanks for all your good luck messages, warm regards and continued support. It means a lot.

Best of luck to you Steffi, keep us posted.

Hi acol, I flew out from Birmingham via Ryanair and back to Luton via Wizzair. Both airlines did a fairly good job of assisting me on/off the plane with my scooter and seating me nice and close to a toilet (just in case). The only gripe I have is the amount of time it takes for the ground staff to arrange to help get you off the plane. But I can’t really blame the airlines for that. Although when we got to Katowice we sat at the rear of the aircraft and waited for almost an hour – which is painful when they leave all the doors open and it’s -6 outside!

You can book your Wizzair flights here http://wizzair.com/skylights/cgi-bin/skylights.cgi?sid=&module=SB&language=EN&step=0

And now a quick update. Something interesting happened last week. For a few years now when I lie down flat I can’t sit up again without either pulling myself up on something, or propping myself up using my arms (because my abs are too weak). But last week when I woke up I just sat upright – twice! I was amazed and thrilled. But because I’m so out of shape now it looks like I managed to pull a muscle in my back in doing so. It’s a nice problem to have and I’m definitely not complaining. No pain no gain and all that. I just hope I can keep doing it.

Right gotta go, will check in again soon.

Best wishes.
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 Algis » Wed Jan 20, 2010 2:51 am

Wow!! Congratulations Mutley!!!
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Dad again

Postby Dovechick » Wed Jan 20, 2010 3:13 am

Mutley, I am so pleased to hear all your good news... It is so heart warming: a new life and the promise of some new abs... who could ask for more.
Congrats to you and to your wife/partner.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Wed Jan 20, 2010 3:16 am

Hi Mutley

Congratulations on the birth of your baby daughter. Its going to be difficult to manage so much good news coming altogether! You must be thrilled.

Thank you for your helpful reply, put together in the midst of all your new chores. When you get time I am interested to know why you used 2 airlines and different airports. Was that deliberate or a force of circumstances? Thanks for the link. I am strongly persuaded to use your hotel which looks like having the facilities that I would need. I know that Pam has booked into that hotel.

Fabulous to hear the good progress that you are making. But you must be careful not to overdo things. I would hold back on your entry to this years London Marathon. :lol:
Nigel
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Postby acol » Wed Jan 20, 2010 3:22 am

Oh - by the way. When you booked your hotel did you do it on-line or direct or a combination of the two. The reason I ask is because on-line booking rarely allows discussion of disability needs.
Nigel
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Postby crocky » Wed Jan 20, 2010 3:25 am

congratulations Mutley, to you and your wife - so glad to hear that you are doing so well health wise - best of luck for the future and keep us all updated when you have time.
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