Poland W/C Monday May 3rd - anyone going?

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

Poland W/C Monday May 3rd - anyone going?

Postby Mutley » Mon Apr 26, 2010 10:04 am

Anyone going?

I'm scheduled for Tuesday 4th. Would be good to meet up and put some faces to names maybe.
Last edited by Mutley on Mon Apr 26, 2010 12:43 pm, 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 LR1234 » Mon Apr 26, 2010 10:56 am

Hey Mutley, I would like to go back to Poland and check my veins as i am in a vertigo relapse. I want to check the vein I had ballooned as I have a lot of pressure in my ear coming from that side.. Maybe I will contact Dr S and see if I can get in quick!
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Postby Mutley » Mon Apr 26, 2010 11:09 am

Hi LR, I'd definately send them an email and see if you can get over. Send it to Marta as well as she seems to be really on the ball. Best of luck, and hopefully see you there :D
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 LR1234 » Mon Apr 26, 2010 11:12 am

How you doing anyway Mut? You are obviously feeling a decline again:( Do you feel the procedure gave you enough benefits at first to believe there is something to it?

I do, My eyes and strength and light headedness went as well as the tremors but this vertigo relapse has kinda thrown a spanner in the works (even though I think it might be self inflicted from anti candida diets and chiropractor manipulations)
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Postby Mutley » Mon Apr 26, 2010 12:41 pm

Nowhere near as good as I had been sadly. The first few weeks were great but the improvements didn’t last long. I really really believe in CCSVI and I can’t wait for further research and for testing/corrective procedures to be refined. It’s a very exciting time if you’re affected by MS isn’t it.

Anyway, this trip for me is perhaps a little less than ordinary. The more I look at my scans the more it seems that part of my problems are related to the sternocleidomastoid muscles in my neck that have completely flattened my IJV’s. Whilst I’m hoping that a long term fix awaits me in Poland, I have no idea whether there’s anything they can do about it. I’m worried that putting a stent in a vein that’s already squashed by muscles may not be viable, and if it is, what affect the stresses will have on the stent. Last time out during the venogram, they couldn’t even get the probe/tube thingy past this area and so they had to go in via my neck. I suppose its par for the course to be preoccupied by detail this side of getting there so I’ll try not to worry.

Have you had any positive affects from the chiropractor manipulations? I’ve read about some people who feel worse afterwards……
Last edited by Mutley on Tue Apr 27, 2010 3:06 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 sunlounger » Mon Apr 26, 2010 1:35 pm

Hi Mutley,

Good luck on the 4th,
I will be arriving at quebus on the 6th,
Hope we can meet up ?
You might find that you’re not lost
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Postby Mutley » Tue Apr 27, 2010 2:34 am

sunlounger wrote:Hi Mutley,

Good luck on the 4th,
I will be arriving at quebus on the 6th,
Hope we can meet up ?


Hi Sunlounger,

Sounds like a plan. I don't fly back until Friday 7th so we should be able to sort something out.

Any idea what they will do for you when you are out there?
Last edited by Mutley on Tue Apr 27, 2010 8:50 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 LR1234 » Tue Apr 27, 2010 2:57 am

Yes I feel worse since having my neck manipulated by chiro:( I didn't have vertigo before I had the manipulation.
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Postby sunlounger » Tue Apr 27, 2010 3:06 am

how about meeting up in the sky bar Thurs evening ?

the balloon angioplasty I had in Jan on my left jugular has re-stenosis so back for a stent this time,and will ask them to check azygos again,

It always looked like from video of angiogram that the angioplasty was never successful and there was still a reflux,

http://www.youtube.com/watch?v=mS8hRladS5M

But as Dr Simka said I'm no expert so I returned last month to make sure and yes I have definately re-stenosis,
So I am very hopeful this time :D
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Postby mags4short » Tue Apr 27, 2010 6:26 am

I arrive on the 4th until the 11th, so am hoping to meet up with a few people from here.

Let me know which bar you will be in and I will get the beer in :)

Mags x
Alone we can do so little, together we can do so much :)
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Postby Mutley » Tue Apr 27, 2010 8:55 am

sunlounger wrote:how about meeting up in the sky bar Thurs evening ?


Sound slike a good plan to me. I enjoyed exploring their vodka options last time :D

sunlounger wrote:the balloon angioplasty I had in Jan on my left jugular has re-stenosis so back for a stent this time,and will ask them to check azygos again,


Sorry to hear about that. Looks like we are both looking for something thats long-term this time. Let's keep our fingers crossed for good outcomes all round.
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 Mutley » Tue Apr 27, 2010 8:58 am

mags4short wrote:Let me know which bar you will be in and I will get the beer in :)


Hi Mags,

Plans are unravelling for a rendezvous in the Sky Bar - Top floor of the Qubus Hotel :D

Will this be your first trip?
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 Mutley » Tue Apr 27, 2010 9:00 am

LR1234 wrote:Yes I feel worse since having my neck manipulated by chiro:( I didn't have vertigo before I had the manipulation.


Ouch!

Have you tried IBT or anything like that?
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 » Tue Apr 27, 2010 9:18 am

Mutley wrote:
mags4short wrote:Let me know which bar you will be in and I will get the beer in :)


Hi Mags,

Plans are unravelling for a rendezvous in the Sky Bar - Top floor of the Qubus Hotel :D

Will this be your first trip?


Hiya Mutley,

Yes this is my first trip so I am nervous, excited etc. I have been following your journey which has helped, thank you for all the info.

I am down for doppler and procedure on the Thursday, so will probably not make it to the bar that night. But if all goes well then I will catch up with you at some point.

I haven't a clue how I will be afterwards but am hoping to make the most of it all :)

Let me know if you will be around on Tuesday or Wednesday eve. You are going back on the Friday I think?

Mags
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Postby crocky » Wed Apr 28, 2010 11:33 am

Just to wish you all Mutley, Sunlounger. Mags, Fiddler et al, all the very very best for your procedures.
I'm about 20 days after mine now, a little disappointed with the result so far, but things are changing, so I am still optimistic.
I feel much better in myself now - I use to feel sick and flu ish all the time - unfortunately I still suffer from fatigue - wishing it would go away, but it was really really bad, so reckon it's going to take some time.
I still really believe in this stuff - (I'm sp ms and have to use a wheelchair outside the house due to fatigue).
I wish you a great stay and lasting results!a
Suzanne
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