My Poland Experience

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

Postby ClaireParry » Wed Apr 07, 2010 10:59 pm

Thanks Mark, you'r right I do have the option to return, and I will if I have to. Hope you are keeping well? I bet the little one is getting big now? Will you return to Poland? I'd read on here, I think it was Brynn that they drastically reduce the cost if you return for stents.

Pepe, that still makes me laugh, I hope your wife is still shopping to her best abilities :lol: :lol:

Xia! Hi, it was great to meet you to. I'm just about to start a course of IV's for this little beauty. It's all about the stress. I was so scared about the op never having been a patient in hospital before! What a softie I am.....

I truly believe that once this relapse is out of the way things will pick up from a CCSVI perspective. The improvement that remains is better spasticity for sure.

Take care and I hope good things are happening for you,

Claire
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Postby LR1234 » Thu Apr 15, 2010 12:42 pm

How are you doing Claire?
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Postby Mutley » Thu Apr 15, 2010 1:04 pm

Hi Claire,

Apart from the MS goodies, I’m doing great thanks. Little one is certainly growing, think she’s got my appetite :D

Yep, I fly back to Poland a week today. I’m certainly hoping it’ll be a little cheaper than the first trip and I’m certainly looking forward to being chaperoned to/from the Airport this time and maybe meeting Marek too. I just hope that doing something a little more permanent for me this time is an option. Guess I’ll find out soon enough though.

How are you doing now?
Last edited by Mutley on Fri Apr 16, 2010 8:49 am, edited 1 time in total.
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 crocky » Fri Apr 16, 2010 8:42 am

Hi

I just wanted to wish both Mutley and Claire all the very best for their return visits to Poland, and hope so much that this ridiculous volcano in Iceland business doesn't interfere with your flights.
I've been liberated for a week now and am feeling a lot better than before. I'm walking a lot better, I unfortunately still get fatigue, but much less and it doesn't feel ms ey - before I felt perma flu ish.
I am taking it pretty easy - my legs ache from walking having not walked for do long!
I had angio in both jugulars and a stent in my left one.
Anway, all the best to you both, and all who are waiting for liberation - Suzanne
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Postby Rose2 » Fri Apr 16, 2010 10:45 pm

Claire,
Good wishes on your treatment. REALLY, I strongly advise you to take it very easy.
I way over did it for the first few months after my procedure and it is only hindsight that shows me.
Even grabbing the car door to slam it shut put my shoulder into pain for months. It is hard to figure out what is too much. I know what you mean. But please sit and rest. Your body needs it as much as you want ot use it.
Sincerely, Rose
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Postby ClaireParry » Thu Apr 22, 2010 11:59 am

Hi Everyone,

Thought I should give you an update.

I'm still in relapse at the moment, feel really quite bad and so I'm not sure if I'm still liberated or not?? Quite confused actually. Thats why I've been a bit quiet. Wanted to be in a better frame of mind before posting.

Things are getting better slowly and so hopefully once this relapse is over I'll have a better idea of where I am.

If I believe I've re stenosed then I'm def back to Poland. The improvements were there for sure after the op.

Anyway, best wishes to all going to Poland, lets hope the volcano stays quiet!!
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Postby ndwannabe » Thu Apr 22, 2010 12:29 pm

(((Clare))) Hoping you will get well soon (one way or another!)

Thank you for still finding energy to post and update us.
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Postby QueenMum » Thu Apr 22, 2010 2:32 pm

Thank for the update Claire. Hoping you'll be feeling better real soon- one way or another! You're in my prayers.
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Postby ClaireParry » Sat Jul 10, 2010 11:59 am

Hi Everyone,

Its been a while but I've been in a bad way and until I felt positive about things didn't think it was a good idea to post.

I think I must have restenosed within a day or two of the operation and I had a relapse almost in recoil?? However, the relapse has finally settled but has left me in a worse position than I was before.

Liberation DID work albeit only for a few days and so I'm back in Poland at the beggining of November for dopplers and definitely stents. I'd like to go back sooner but with work, family committments etc I can't. I was also getting quite angry with Euromedic as they were not responding to emails and the phone was never answered but they have redeemed themselves by letting me cherry pick a time to go back!

So, in the meantime my Neuro is talkng Tysabri and I don't know what to do? Roll on November!!!!!!!!!!!!!

Hope you are all well

Claire
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Postby mags4short » Sat Jul 10, 2010 12:25 pm

Hi Clair,

I have been having similar problems with Euromedic not answering emails etc. I want to make an appointment for a check up as I have a feeling I may have restenosed. BUT they are not answering. I want to go back before November.

Good luck with the next appointment.

Mags x
Alone we can do so little, together we can do so much :)
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