Crocky's trip to Poland

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

Crocky's trip to Poland

Postby crocky » Sun Apr 11, 2010 3:36 am

I am sitting in the hotel waiting to go to the airport, having been liberated 2 days ago.
It has all been a fantastic experience - very well organised, wonderful people and of course the procedure.
Its only been 2 days, and I'm not saying that an instant miracle has been performed, however - little by little things are changing.
I was in a wheelchair most of the time when I arrived due mainly to crippling fatigue and bad balance. I can't say all that has totally disappeared, but the improvement is great - I can get down to breakfast in the hotel without the chair - ok I still have fatigue, but compared to the levels it was at just 3 days ago, there is a marked improvement.
I totally believe in ccsvi - I had both jugulars with blockages, and now have enormous hope for the future. Of course I hope that it will become mainstream an all msers can have access to this amazing treatment.
It only happened to me thanks to this site and the people on it, so please, if anyone has any questions, I'd be glad to try and answer them.
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Postby Johnson » Sun Apr 11, 2010 3:39 am

Thanks for the smile.

Happy New Life!
My name is not really Johnson. MSed up since 1993
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Postby Inge67 » Sun Apr 11, 2010 3:41 am

Congratulations Crocky!
So good to hear that everything went well and that already slight improvements are noticable.
Please take care and be well!

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Postby sunlounger » Sun Apr 11, 2010 4:03 am

Hi Crocky

Thanks for update,
Great to hear your feeling some improvements :D :D :D

Did they just balloon or use stents ?

Best wishes :D
You might find that you’re not lost
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Postby mags4short » Sun Apr 11, 2010 4:13 am

Congratulations!!! I hope that you see many more improvements as the days/months pass. Please keep us informed.

Mags AKA Margaret xx
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Postby Katie41 » Sun Apr 11, 2010 8:57 am


So wonderful that you are experiencing improvements. Little by little, "step" by "step", ups and downs. unexpected fun surprises.

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Postby annad » Sun Apr 11, 2010 9:21 am

Congratulations, Crocky!
Baby steps, baby steps. . .
You're future looks great!
best wishes!
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Postby Vhoenecke » Sun Apr 11, 2010 9:43 am

Congratulations Crocky,

I will be joining you with being liberated soon. Just 2 weeks and I will post my experiences on here.

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Postby Mutley » Mon Apr 12, 2010 4:00 am

Hi Susanne,

That’s great news and I’m really happy for you. It feels a bit weird being happy about blockages in someones neck, but it's so exciting to finally pinpoint something that’s tangible and treatable isn't it.

Hope you have a safe journey back and looking forward to hearing all about it.

All the best 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 crocky » Mon Apr 12, 2010 7:34 am

Thanks to all who have replied so far - Mutley, I was just thinking about you and wondering how you were getting on.?
Sunlounger I had a stent in my left jugular.
Today I'm feeling a bit tired, however much better than before my procedure.
I no longer have perma-flu feeling, which is a great relief - Of course hoping for more improvements - walking is better, but want it to be even better - human nature I suppose!
In general, I am happy with my progress, but am waiting for bigger and better things.
To any of you waiting to go to Poland, you are in for a great experience. Wonderful people, everything very well organised, I couldn't praise them highly enough!
I will keep everyone updated on any progress, and fill in the tracking thread when a bit more time has elapsed and I feel more able to comment accurately.
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Postby colmmc » Tue Apr 13, 2010 6:55 am

You made me Cry a little bit!
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Postby SandyK » Tue Apr 13, 2010 12:10 pm

Wonderful news! I am finding myself in a wheelchair more often as I progress downwards so you just made my day. January can't come soon enough!
Diagnosed 1994, Self EDSS is 6.5
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