stented in poland - esta tries again

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

stented in poland - esta tries again

Postby esta » Wed Sep 01, 2010 11:03 am

Well, i'm back from Katowice Poland and delighted to report, after receiving the procedure for the 2nd time and getting a stent when my angioplasty appeared to collapse after my procedure in May, it is working well, and all my benefits are returning!!!!!!!...

Yes, I went back to Dr. Simka and asked him to check my Azygos vein again as I have PPMS, so he did, and he also checked my Iliac vein. All create huge complications that compound this whole concept he emphasized , but he was willing to do it for me.

My improvements are slower than before, but steady. My brain fog lifted after a day, my voice and legs are stronger and my words aren't slurred anymore, and when I'm not too tired my finger dexterity is returning. This is in less than a week! We're home now after an extremely long plane ride to western Canada, and fighting with jet lag!

I was advised not to drink while on blood thinners, yet I don't recall them saying that last time, soooooo...
This time we had a doppler the next day too, which was new. And also a group meeting before the hospital stay, and there was an assistant working with the neurologist who spoke English well, and was very helpful. The neuro also meets with everyone after too.

All in all, it's good...I would highly recommend not leaving home without antibiotics for the women...as they catheterize...and know the night nurses only appear to come if the call bell is rung. So, have one person get that portable bell for the group, and give it to the one who doesn't sleep, and can hear anyone yell nurse or help...they come then, and even with the language barrier most things are communicated. I thought I'd be so smart and got the google translator to write in Polish all my anticipated night needs, buuuuuuutttt, this time they were different, so...that wasn't my greatest moment.
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Postby ErikaSlovakia » Wed Sep 01, 2010 11:47 am

Dear Esta!
I was expecting your post. I wish you the best!!!
Say hi to your husband, please.
Take care!
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 tipsyturtle » Wed Sep 01, 2010 4:49 pm

Congratulations! Wishing you continued success.
Jo

PS We met in Katowice in May ( i was returning to support a friend after an April procedure).
:D
Katowice, April 7/8
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esta

Postby blossom » Wed Sep 01, 2010 5:52 pm

it is good news to hear. so glad you are doing well again. could i ask how long it was between procedures? could i ask what type blood thinners you are on and for how long? this is so good to hear when anyone rrms or whatever we are branded with improves. as i am ppms too this is good to hear. my treatment was not what i expected and i am trying to get a plan b together. wouldn't it be nice if more of the good old boys "doctors'in our back yards would jump on board here soon. all this travel etc. can kinda get a person on the edge at times. here's to continued improvement. rest well.
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Postby esta » Thu Sep 02, 2010 7:51 am

thanks erika!!!!!!!!!!
its all about just moving forward now, it is slower, but it is forward!!

hey tipsyturttle, i never thought you'd remember me - thanks, and all the best to you too...
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Postby crocky » Thu Sep 02, 2010 8:10 am

Hi Ester
Great news that your 2nd go is working well at the moment, also good to hear that he checked your arzogous upon reguest - there have been some on this forum complaining that Dr Simka didn't do this - glad to hear they are wrong!
I'm going to Katowice to see Dr Simka for the 2nd time on Tues and hoping very much for more lasting results this time.

Jo, it was great to meet you back in April - hope you are still doing well, and Erica, who inspired me to visit Katowice in the first place.

Best wishes to you all - Suzanne
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Postby esta » Thu Sep 02, 2010 8:22 am

hi blosoom
ok, so the blood thinners - what a production. i gather after the shots for 7 days (Fraxiparine), i go onto another blood thinner pill every day for a year, (Areplex) AND AT THE SAME TIME a baby asperin (150 mg) every day, then forever.
(Polprazol is for my stomache.

oy vey, i don't do drugs, so this is a fairly significant change in my world.
I'm full of bruises is all I know...
Last edited by esta on Fri Sep 03, 2010 9:01 am, edited 2 times in total.
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Postby esta » Thu Sep 02, 2010 8:36 am

hi crocky
I love Dr. Simka. I am forever grateful to him for all of this. He also wangled me into the hospital this time, as Eruro Med screwed up somehow and didn't have me booked.
He listened to my requests, went a step further with my iliac vein check, and I trust him. He said the complications are risky with the azygos and iliac veins. One fellow did get a stent in his azygos, as he was severely disabled and the results were phenominal. Dr. Simka still said he found it to be a low incidence.
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Postby esta » Thu Sep 02, 2010 8:40 am

sorry blosoom, my first procedure was May 6th, and this one was Aug 26th.
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Postby tipsyturtle » Thu Sep 02, 2010 9:59 am

Gosh, I remember everyone as this was such a huge life experience for me. Glad things are moving in the right direction Esta and thanks for keeping us informed.

hey Suzanne, sorry I'll miss your return to Katowice- I'm planning a follow up visit in October or November. Good luck!

As for me, the past 6 months have had ups and downs- and Dr. Simka advised patience, but I feel good.

Think of you all often,
jo :P
Katowice, April 7/8
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Postby ClaireParry » Thu Sep 02, 2010 11:22 am

Esta - it's so good to hear that your 2nd experience is positive so far. I'm returning in Nov. I had the op in March but i've def re-stenosed.

I've been told to book a weeks stay so as I can be slotted in if needs be. I had only balloons before and wonder if they will listen to my pleas for stents!!

Heres to more inprovements for you!!

Claire :D
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Postby esta » Fri Sep 03, 2010 9:25 am

Hi ClairePerry
i had some seious trouble getting into the hospital and would email them again for a definite hospital date, as you know you've restenosed...i think marta learned a harsh lesson after dr. simka lit into her about not scheduling me, she may be doing things differently now.
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Postby ClaireParry » Fri Sep 03, 2010 9:39 am

Thank you. I shall mail her again first thing Monday!!

I was very clear though about wanting to stay for the op, which at that time she said was fine. As for many of us I can't afford to keep 'nipping' over to Poland although I appreciate in the UK we're a lot close than some!!

Claire
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Postby esta » Fri Sep 03, 2010 9:50 am

hi claire
i thought i was clear too, but...so, good you'll do it. it's the same with me, and we're on the west coast of canada. 'nipping' back isn't an option for me either.
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Postby mags4short » Sun Sep 26, 2010 4:55 am

Hey Esta!


Glad to hear that you are improving ;)

I am trying to get another appointment to see how things are. I am undecided at the mo as the Glasgow clinic is nearly ready to go. Do I wait for them, or return to Poland? This is the question.

I am with you on returning for the experience, but it is easier for me to get to Scotland than Poland, so that is were I am at the moment.

Did you get charged the same this time around?

Mags x
Alone we can do so little, together we can do so much :)
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