Mags is off to Poland... round 2 :)

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

Postby Cece » Tue Nov 30, 2010 9:50 am

nagsy wrote:PS One of the panel at the Glasgow conference said that having the procedure redone during the 6 month period (+- 1 month) is probably the best time to have it done. Something to do with the fact that the vein walls will not have hardened completely yet.

That is interesting, nagsy. Do you mean that right at 6 months is better than both earlier or later? Or that anytime up until 6 months is good? Was it one of the CCSVI big names that said this?
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Postby prairiegirl » Tue Nov 30, 2010 9:51 am

Wish you the very best with your check-up and potential treatment, mags! Look forward to hearing your updates.
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Postby mags4short » Tue Nov 30, 2010 10:48 am

Thanks very much, CCSVIHusband, yes you got it right I am excited :)

NHE, CentreofGravity, Carrie and Prairegirl, thank you also for your kind words. :)

Pinda,
PS One of the panel at the Glasgow conference said that having the procedure redone during the 6 month period (+- 1 month) is probably the best time to have it done. Something to do with the fact that the vein walls will not have hardened completely yet.


Thanks for sharing this, looks like I am going back at just the right time. :wink:

I am off early in the morning and will not have my laptop with me this time. If I can find a computer at the hotel I will update from there, if not I will post when I get back.

Thanks again,


Mags x
Alone we can do so little, together we can do so much :)
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Postby esta » Tue Nov 30, 2010 12:52 pm

hi mags
all i can say is HOPE is the word...its our future!!!!!!! good luckm and can hardly wait for the details! :D :D :D
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby mags4short » Tue Nov 30, 2010 8:24 pm

esta wrote:hi mags
all i can say is HOPE is the word...its our future!!!!!!! good luckm and can hardly wait for the details! :D :D :D


Thanks Esta,

Yes I am with you on that one, HOPE is what keeps me going :)

Take care,

Mags x
Alone we can do so little, together we can do so much :)
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Postby DizzyLiz » Tue Nov 30, 2010 8:30 pm

Good luck Mags
Hope it does it for you again.
Keep us posted when you return.
We met in May... my daughter was treated and continues to have energy and other good things.
L
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Postby Vhoenecke » Wed Dec 01, 2010 8:54 pm

Wishing you all the best Mags.
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Postby mags4short » Mon Dec 06, 2010 3:56 am

Hi everyone,

Just a quick check in as I need some sleep :)

I got back from Poland yesterday. Everything was a little hectic there... I arrived on Wednesday and went to see Professor Simka on Thursday. He told me that there was reflux throughout the whole of my LJV and it appeared that I had restenosed. He said that they had made provision for me to have the procedure again the following day if that is what I wanted.

Is that what I wanted YES!! :) Anyway, I went into the hospital first thing Friday morning, was first on the list for the procedure at 9.30. Whilst in there I was told that my LJV was 80% closed and that this time they would try a larger balloon above and below and a small balloon in the middle of where it was narrowed. I was asked if I had considered a stent, to which I replied that I had and that although I was reluctant at this time, if the doctor thought it was absolutely necessary then he could go ahead. ( I was passing the buck slightly, but totally trusted his decision). Anyway as it happened he did not use a stent and I was happy with that.

Stayed overnight in the hospital Friday and rested in the hotel room on Saturday before flying home early Sunday morning.

It has been a bit of a whirlwind but I am glad to be home :)

The results so far?? My balance is better again, I am hoping that that will continue to improve. I am having all sorts of weird sensations down my left side, especially in my arm and hand, it feels like it is thowing out, for want of a better description? I keep getting a weird feeling and then a sharp electric shock in my fingers, only lasts a couple of seconds, and then a nice warming tingling feeling through my arm. Will see how that pans out.

Anyway, I am going back to my nice warm bed and will update in a few days when I have recharged my batteries :)

Take care all ;)

Mags xx

Oh PS...

DizzyLiz wrote:Good luck Mags
Hope it does it for you again.
Keep us posted when you return.
We met in May... my daughter was treated and continues to have energy and other good things.
L


Hey Liz,

Great to hear from you again! I am so pleased to hear that your daughter continues to improve, pass on my best wishes to her. xx

Wishing you all the best Mags.


Thanks Vhoenecke x
Alone we can do so little, together we can do so much :)
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Postby CCSVIhusband » Mon Dec 06, 2010 5:27 am

Good stuff mags.

You restenosed and you knew it (and you were right) ... and another procedure delivered more results.

Huh ... who would have guessed? :lol:

As for the feelings in your arm ... sounds similar to what my wife said ... that she could feel things (like bloodflow returning and different sensations - she didn't say pain though, so I'm not sure it's the same as your feeling, I don't understand what you were trying to say exactly).

Congratulations again ... more proof that what Dr. Zamboni found was real. :lol:
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Postby Donnchadh » Mon Dec 06, 2010 5:57 am

Did they say what the diameters of the balloons were? Sounds like the actual procedure is becoming more sophisticated with more experience. Interesting that different practitioners seem to be converging on adopting more "aggressive" tactics towards ballooning.

Anyway, good luck with your follow-up procedure!

Donnchadh
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Got MS?.....Get Liberated!
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Postby mags4short » Thu Dec 09, 2010 1:08 am

CCSVIhusband wrote:Good stuff mags.

You restenosed and you knew it (and you were right) ... and another procedure delivered more results.

Huh ... who would have guessed? :lol:

As for the feelings in your arm ... sounds similar to what my wife said ... that she could feel things (like bloodflow returning and different sensations - she didn't say pain though, so I'm not sure it's the same as your feeling, I don't understand what you were trying to say exactly).

Congratulations again ... more proof that what Dr. Zamboni found was real. :lol:


Hiya yes, believe it or not, I know myself better than the neurologists do :)

Yes it does sound like what your wife experienced. It is like things are coming back to life. It is not so much a pain I felt in my fingers, more like an electric buzz?? Oh how I wish I could get things across accurately! Anyway, that seems to have settled down now and I am hoping that I get the feeling back fully in my arm and hand ( I did last time ).

I am trying not to be impatient, which is totaly against my nature :) and try not to get too excited about any changes. They do come and go on a daily basis, I just have to give things time to settle down. Anyone got some patience I can borrow, ha ha.

Take care,

Mags x
Alone we can do so little, together we can do so much :)
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Postby esta » Thu Dec 09, 2010 8:42 am

hi mags
i'm not the person to ask about pacience, but congrats on this new method. i sincerely hope it all works out. i'm off for a check up on my stent at the end of the month. hope all is well. we can compare changes in a stent vs larger ballooning. i wasn't offered that...sounds way better. but, things can change even in 5 months. its all exciting :D :D :D
good to hear re dizzyliz and vonachec too, since we were all together in may :)
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby mags4short » Fri Dec 17, 2010 8:55 am

OK I remember putting an update on here and I received a reply, but can't find any of it! I think that there is a problem with the forum. I will check back later to see if it has reappreared, if not I need to try to remember what I put :)

Whoever replied... can you help me? :) Mags x
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Postby Coolcatcarrie » Fri Dec 17, 2010 11:10 am

Hi mags, I read something on here earlier about a hacker getting in the forum and removing loads of posts!? How are u getting on? Carrie
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Postby NotFound » Fri Dec 17, 2010 6:22 pm

Second congratulations, because my first one disappeared :)
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