Mutley goes to Poland, and returns home liberated.

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

Postby ClaireParry » Thu Feb 18, 2010 10:59 am

I'm sorry to hear that Mutley. I know it's a pain to have to return for further treatment, but I suppose that it atleast confirms that the procedure helps you?

I's made me think about my own procedure at end of March.

The Vasc Surgeon I know has said do not have stents in the valves, but now I'm worried balloons will fail. It's a tough one.

Hurry Simkas return! Hope you get sorted fast Mutley.

Claire
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Postby pgm1 » Thu Feb 18, 2010 11:31 am

Hi Mutley

I'm sorry to hear that to

why would they just not do the stents?it seems to me that people have to go back if they don't get stents so why not put them in no matter what?
I think they should give us a choice and has anybody asked?

Pam
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Postby ClaireParry » Thu Feb 18, 2010 11:34 am

Pam - I think that there are much higher risks with stents, one risk being the risk of migration to the heart.

I've been advised that under no circumstances should i have stents near the valves at the junction with the Brachiocephalic vein as there is a high risk of this.

However, going back for stents if needed also means paying twice!

Claire
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Postby pgm1 » Thu Feb 18, 2010 11:46 am

Hi claire

I suppose the risk of migration would be higher that's why they should ask us if we want the risk.

I to have my appointment in March and am very excited to be able to have this done but i am not sure how going back a second time will work.

Pam
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Postby acol » Thu Feb 18, 2010 11:58 am

Hi Pam

This is a tricky area. Even if a patient was willing to take any risk, a good doctor would always want to work within areas of what is considered to be acceptable risks. I know that my own attitude to stents has changed considerably over the last few months as a result of the experiences of other people.

3 months ago I might have said - 'If a stent is considered absolutely essential then I would, with misgivings, accept your medical judgement.' However, my attitude today would be to indicate to the doctor before the procedure that one of my biggest concerns would be if a blockage reoccured. In other words, a preference for stenting if there was an option. However, I would not go as far as to say to a doctor, stent regardless - it is my risk!
Nigel
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Postby Pepe » Thu Feb 18, 2010 12:00 pm

Hi all,

I have just posted this 2 minutes ago...

This is a short text of the Dr. Simka's presentation last week in Canada: "Stenting only if absolutely needed (ballooning unsuccessful) and if safe (not for areas with changeable diameter during Valsalva"

I hope this help.
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby acol » Thu Feb 18, 2010 4:18 pm

Hi Pepe

Very helpful, thank you.
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Postby crocky » Fri Feb 19, 2010 3:24 am

Hi Nigel
I feel pretty much the same as you do - please dr give me a stent, so I won't have to go back again etc. However, i suppose we just have to listen to his opinion - after all he's the professional - I'm off to Poland in April - can't wait!
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Postby greyman » Fri Feb 19, 2010 8:33 am

Mutley wrote:
Unfortunately, all of the improvements I came back from Poland with have disappeared :( (...)


Hi Mutley
I'm very sorry to hear that the improvements have withdrawn. Like you wrote - at least you've given the balloons a chance, but now it seems that the real "army" must take things over. It's time for stents.

I have a question to you, though. If you remember I, too, had "only" angioplasty for my pathologic valve. Since Monday I've been feeling worse, i.e. spasticity returned to some extent. Other positive effects however seem to remain. My question is: have your improvements disappear one by one, gradually, or fast, like over night?
I hope you'll find time to answer my question.
Rgds,
Adam

P.S. I haven't congratulated on your newborn baby, so here it goes. CONGRATULATIONS! I myself am a father of a 7-month old son and I know well the treadmill of lack of sleep and fatigue that comes with it. But the smile of one's offspring rewards every drawback, doesn't it:)?
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Postby Mutley » Sun Feb 21, 2010 7:39 am

Hi Adam,

I’d say that all of the improvements began to fade in unison really. I did notice first that my feet and hands were not as warm as they had been, but that’s something that’s quite easy to spot I suppose.

My spasticity isn’t very good at all now but the big trigger on that one for me is poor sleep, and there’s plenty of that right now lol. And you are so right about the smiles she brings outweighing the drawbacks. I just hope she sleeps better than her sister did at that age :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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