esta restenosing after may 6th procedure, katowise, poland

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esta restenosing after may 6th procedure, katowise, poland

Postby esta » Tue Jun 01, 2010 8:19 am

i am almost one month post procedure and have noticed within the last week that all my gains are gone (PPMS and in a wheelchair):
-clear head, right away, felt so light - now i feel headachey, heavy thick again
-pinky warm feet - now back to purple and colder
-speech was normal - now i'm slurring my words again
-fatigue gone - now i'm laying down every afternoon
-my core balance strong - now weaker and loss of balance
-my left foot came back to normal from foot drop - now turned in and dropped again
-legs loose and movement easy - now stiff and spasmed again
-no pain, no painkillers - its coming back and i'm taking more pain killers now

its obvious to me, after typing this.
i was going to wait, but it was sooo nice after the procedure, i want to be there again, so i am writing dr, simka now.
stay tuned.
i had angioplasty on my right jugular vein. i know i have to go back again, but i have to be guarenteed a stent...i think maybe overseas people should be given the choice maybe?? its too close to 50%, and its expensive to redo for us in north america...
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Postby ErikaSlovakia » Tue Jun 01, 2010 8:24 am

Esta, I am sorry to read this.
I am even more sad because of Canada...
I wish you the best. In case I can help you, let me know.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Cece » Tue Jun 01, 2010 8:31 am

Sorry to hear this, but it sounds like you know what to do!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby esta » Tue Jun 01, 2010 8:43 am

thanks erika and cece
yes i do know what to do - hope it all works out..i have to trust it will, because it was sooooooooo great!!!!!!
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Postby HappyPoet » Tue Jun 01, 2010 9:21 am

esta,
Hopefully Dr. Simka will be able to see you quickly and give you the stent you want and need. You are in my thoughts and prayers.
~HP
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Postby whyRwehere » Tue Jun 01, 2010 9:40 am

Hi Esta,
I wonder if you could convince someone to see you as due to the treatment you had overseas...you have a "problem" that needs URGENT attention...maybe it is too dangerous to fly in the case that it may be a clot...,I think a vascular surgeon should check you out quickly..Locally. If you know what I mean.
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Postby Cece » Tue Jun 01, 2010 10:26 am

that's kinda brilliant, whyrwehere...I think it's an interventional radiologist, not a vascular surgeon though?

Shoot, I see you just had angio the first time...I think you'd might get further locally if you had a stent, because with those it's pretty clear if it's stenosed or not.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby esta » Tue Jun 01, 2010 10:58 am

hi all
i need to be stented, and i wouldn't trust anyone else but Dr. Simka...I'd love to try here, buuuuuutttttttt, i'd hate the 'thats what you get for going overseas' look.
I've written the doc, so I'll see...I feel like such a chicken---- about approaching the med profession here. :oops: i haven't even gone about the aterial fibrulation eppisode I had on the table over there...
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Postby skincoll » Tue Jun 01, 2010 11:21 am

Really sorry to hear about this. If you can, I think you should try and get scanned at home to see what the problem is. Don't be afraid of the doctors - just ask for what you need. At the end of the day, you getting yourself sorted is more important than what any of those arrogant doctors may think about it!

I go to Katowice on Monday, and if I'm honest, I'm getting a bit freaked out by all these negative reports!

Take care and I hope things get better soon.
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Postby mangio » Tue Jun 01, 2010 12:01 pm

Privately I've heard people are getting follow-up here - don't know
if it's true.
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Postby esta » Tue Jun 01, 2010 1:42 pm

hi skincoll and mangio
i should try here, but will wait for reply from dr. simka.

don't be freaked out, i knew going in there was a 47% chance of restenosing, but also knew i'd be back in a heartbeat after, if it did, because i felt soooooooooo great!!!!!!!!!!

its the stenting...dr simka is the best, and that's what i want. i just have to know that's what he'll do.
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Postby sofia » Tue Jun 01, 2010 1:47 pm

Sorry to hear that. Hope will be able to see you soon.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby frodo » Tue Jun 01, 2010 2:10 pm

Just a question. Where you on blood thinners for a while? did you finished with them? A lot of people has reported similar effects and this could be the answer.
If this is the case and you want to play the guinnea pig for a little more, maybe you could try to get back to them.
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Postby Habenoughyet » Tue Jun 01, 2010 2:12 pm

Esta, I'm really sorry to hear about that... I leave in a few weeks with Simka, PPMS here to, it just sickens me to hear that you would have to go all the way back to Poland... But if you restenos, don't you have the data to know where to look???

Wouldn't they, and I mean locally, be able to see where you were stenosed and re-balloon or stent???

Just wondering...

HEY
"Never argue with stupid people... They bring you down to they're level and beat you with experience"
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Postby esta » Tue Jun 01, 2010 7:14 pm

HI Frodo
i did the 7 day thinners, that would be almost 3 weeks ago..,hmmm i see my doc next fri, i should have an answer from dr simka by then. i did take a 7mg aspirin after the thinner. then i thought I shpuld take IBProphen for inflamation, mabye back to the asprin...

habenoughyet
-ha in canada? If I did get it checked, I'd have to pay for it. I'd rather put the money towards airfare since no one does stents.

hey, maybe dr simka will start to rethink the angioplasty theory and, at least for long distance travellers, or people over a certain age, or beyond a disability point, DO STENTS!
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