Back from Poland!

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

Back from Poland!

Postby Nees » Mon Feb 08, 2010 9:37 am

Hi All

I've updated the tracking thread with everything, but I've been asked how things are going so thought I'd post my progress here.

I had balloon angioplasty on my right jugular vein to clear a membrane and open up a mild stenosis, on the 21st Jan in Poland. Since then I feel warm! My feet are no longer blocks of ice, and that was instant, my hands are warmer too and no longer go blue. I now have more feeling in my feet, I noticed that improvement the day after the procedure and it continues to get better. More feeling has also started to return to my hands, starting with the palms, then my little fingers (in the last week), now spreading to ring fingers in the last couple of days. I think my balance and leg strength are slightly better, I can walk in a straight line rather than like a drunk, and I find stairs easier, but its so gradual that its difficult to say when it started.

The first 3 days after the procedure I had buckets of energy, but that seems to have disappeared. Maybe due to blood thinners (Herapin) which I was only on for 9 days, but I'm still getting spectacular bruises so I guess I still have thin blood. Hopefully that will improve soon.

For anyone doing the Best Bet Diet, I did experiment at the weekend with something I'm intolerent to, eggs. I still react to them and they made my balance worse for about half a day, but I think I recovered quicker.

I'll keep the tracking thread updated with my progress.

Sharon
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Postby mshusband » Mon Feb 08, 2010 9:40 am

That is so great!

This becoming common protocol can't get here soon enough!

Congratulations and please keep us updated!
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Postby ozarkcanoer » Mon Feb 08, 2010 9:53 am

The news from the trenches is always great to hear !!! I hope things continue to improve for you Nees. I am wondering if you have any fatigue and if so do you notice any improvement ?

ozarkcanoer
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Postby sunlounger » Mon Feb 08, 2010 9:59 am

hi sharon,

thanks for the update
glad to hear to your improvements :D
i had big fatigue problems straight after my procedure which are only just getting better after 3 weeks.

I agree with keeping on the BBD its just not worth the risk going off it
hope you continue having improvements :D
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Postby mshusband » Mon Feb 08, 2010 10:36 am

All:

I know this might be a dumb question but it's one I've had in my head for a while so maybe someone could enlighten me.

For those of you that went to Poland ... did you know you had stenosis in your veins before going? Or did you get tested as you went?

Isn't that a big risk/cost to go and they not find anything?

I just wonder, because I see now that BNAC is going to do pay-for testing ... is it worth it to get it done first ... and then look into a trip to Poland (even though it's a long wait) and pursue doctors here ... or get on a list for abroad and just risk going there and nothing being found?

Has anyone gone to Poland and not had anything found?
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Postby greenandchic » Mon Feb 08, 2010 11:39 am

Thank you for sharing!

Like you, my feet are also like blocks of ice and my hands are always cold despite how much exercise I get. I have never been explain it over the past few years and I never read that to be a MS symptom...
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Postby markuso » Mon Feb 08, 2010 1:21 pm

Hello Sharon,
Nice to hear your improvements.
I think we meet us in katowice on that eye-test 8)

Markus
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Postby nicko » Mon Feb 08, 2010 10:45 pm

Its nice to hear the good news :)

When I was on rebif it actually stopped my ms in its tracks for 2 years.
My balance was awful, fatigue was awful, feeling in my legs were horrid.

After a year with no relapses I was almost back to normal. But the healing was so gradual and slow I didn't really take notice of most of it. It wasn't until I went to see my neurologist that he pointed it all out. Its funny how you can miss things when they change so gradually.
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Postby annad » Tue Feb 09, 2010 12:52 pm

Nees. . . keep on reporting all those good things. . .it's what keeps many of us going :)

mshusbnad. . not a dumb question. . . I've wondered that about myself actually. Do I wait until after I know or just go? I guess there's no right answer. Dr. Simka seems to find things others couldn't.
best wishes to all!!
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Postby Johnson » Tue Feb 09, 2010 3:40 pm

mshusband wrote:All:

I know this might be a dumb question but it's one I've had in my head for a while so maybe someone could enlighten me.

For those of you that went to Poland ... did you know you had stenosis in your veins before going? Or did you get tested as you went?

Isn't that a big risk/cost to go and they not find anything?

I just wonder, because I see now that BNAC is going to do pay-for testing ... is it worth it to get it done first ... and then look into a trip to Poland (even though it's a long wait) and pursue doctors here ... or get on a list for abroad and just risk going there and nothing being found?

Has anyone gone to Poland and not had anything found?


I don't have a mainstream medical diagnosis of CCSVI, but I can feel it, and it makes sense to all of my MS experience over the last 17 years (actually, more like the last 35 years). My cranio-sacral massage therapist has also identified "paradoxy" in the flow of my carotids and jugulars (they pulse simultaneously), some trouble at the juncture with the brachio-cephalic vein, and mentioned a bulge in the azygos. Since I have complete faith in her sensibilities, that is enough for me to go to Poland "blindly". Further, with reported 95% (+/-) affected jugulars in MS patients, the probability is exceedingly high that my jugulars are messed up. The only question I have, is "why"?

I do seem to recall that one woman reporting on this forum, I think from England, went to Poland for screening, and no stenosis was found. I regret that I cannot remember the details, my brain function is poor these days.

All testing and studies aide, what does your wife's heart tell her? Does she feel a fullness in her throat/neck? Unexplained chest pains? Does she feel worse after sleeping all night? Chances are +/- 95% that she has stenosis, or another venous pathology. $4500 for testing will fly you to Poland in business class. Make a trip of it - go see Prague (Czech Republic), etc., then even if she has no stenosis, you will get something from the trip.
My name is not really Johnson. MSed up since 1993
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Postby greenandchic » Tue Feb 09, 2010 4:39 pm

I have always wondered that too: what if they dont find anything. I too am worried about the cost of travel since I am coming from the west coast...So far I found economy class for ~$650RT (for December)....
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Postby Nees » Fri Feb 12, 2010 7:25 am

Thanks for all your kind wishes! Now I've something exciting to report, just over 3 weeks post-procedure:

Yesterday I reached the point where I can say, yes I'm definitely better than I was! I met some friends and walked quicker than some of them for half a mile (we were late!), and they commented, 'What's happened to you?', 'Poland!' I replied. The feeling in my feet is very nearly normal, just some fuzzy patches round my heels. Same with my hands, just the very tips of my finger and my thumbs. Weirdly both my right hand and foot is slightly better than my left. Balance and coordination are not keeping pace with my strength gain, I guess that'll take more time.

For those that were asking, I did go just for the Doppler test before committing to the procedure. But it wasn't that far or expensive from London. Everyone else I met there did the whole lot, diagnostic and procedure, in 1 trip.

Hi Markus, yes that was me! How are you doing?
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Postby ClaireParry » Fri Feb 12, 2010 7:45 am

Thats reallt great news!!

I went for the Doppler and MRV on Tuesday.

I'm waiting to hear from a Vasc surgeon I know but if nothing good comes from it I will go to Poland. Have a date in April I hope!

Mine are valve problems both sides with stenosis on left.

Can't wait to get it all done.

Congrats to you and may the improvements keep coming :D :D
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Postby Algis » Fri Feb 12, 2010 7:53 am

@Green: 650$ is not a bad deal; do you have to reserve long in advance?
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Postby acol » Fri Feb 12, 2010 9:37 am

Hi nees

Really pleased to hear your good progress. Half a mile - I dream of walking a tenth of that distance!
Nigel
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