Some more notes from abroad (Poland)

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

Some more notes from abroad (Poland)

Postby moochsid » Thu Apr 01, 2010 1:49 am

We are just a few hours post procedure and wanted to make some very brief observations that might help others that are feeling reticent or unclear about the way things work over here.

Like many others before us we have nothing but praise for the back up people, nursing staff and doctors. They are all very friendly and relaxed to a degree that might seem diffident to more western approaches and people used to lubricative bedside manners and' being 'talked through' everything. The answers are forthcoming eventually but, maybe still as a legacy of Communism perhaps, we are still dealing with a culture that doesn't set out to explain things up front in huge detail. This is by no means to disparage the level of skills and expertise of the people concerned but a factor that I have observed from having worked over the years in Poland . They are masters of the art of institutional improvisation and I can assure everyone that it all does click into place but obviously everyone is nervous with differing levels of expectations. There have been crude levels of propaganda painting Poland as a quasi-third world country hell bent on ripping people off. Apparently some sources in Canada and Holland are painting a similarly bleak picture. But have none of it.
Anyway it's very very early days and I will report more on progress at a later date but thought I'd add my twopenny-worth whilst it was in my mind.

The biggest eye-opener was how much the actual procedure itself was instrumental in determining the level of constriction/blockage rather than reliance on MRV/Doppler results which I think maybe of interest to people taking it on a step by step basis. This again is not a 'scientific' observation but one divined by a layman's observation and swapping stories with others.

Last tip to Europeans do not forget to bring European Health Insurance Cards as there's a huge discount to be had from pharmacy for post operative prescriptions.

Kevin and Iza
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Postby costumenastional » Thu Apr 01, 2010 2:08 am

Welcome.
Thank you very much for the heads up. I wish you my best and any possible improvement to come for you. And when this comes, let us know.
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Postby moochsid » Fri Apr 02, 2010 2:34 am

Well it's day 2 and things are still slightly improving. A bit of a scare yesterday with the problems of bleeding from the entry wound but it has been staunched with a huge bandage and although Iza has thin blood anyway (A very high Omega 3 level of over 60%) it was perhaps to be expected, as is the massive bruise down her leg. People around us here have noticed her improvements, stronger voice, more confidence and a glowing relaxed face instead of a pallid grimace.
I have to admit to having kept a lot of information from her about this business to try and separate out any placebo effects so when she said a few minutes after the op that she had warm feet and could wiggle her toes I knew we were onto something because she didn't know what to expect. There was a slightly comical aspect to this as well when this morning I asked whether the stent was giving her any problems and she said no but was really worried about bursting the balloon in the other side. She had assumed the balloon was a permanent fixture like a ballcock rather than a device for widening the walls of the vein.
So it's back on the train tomorrow..yes to the amazement of the people here we have pioneered getting here by train and should be back in Edinburgh Easter Monday.

Thanks to Badger for the links to the Evening Times which I've used to show everyone what it's like here.Long may you keep going with the improvements.
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Postby Cece » Fri Apr 02, 2010 11:39 am

moochsid wrote:I have to admit to having kept a lot of information from her about this business to try and separate out any placebo effects so when she said a few minutes after the op that she had warm feet and could wiggle her toes I knew we were onto something because she didn't know what to expect.


My feet are very cold right now & it is as always excellent to be reading of post-procedure warm feet...and for her not to know to expect it, that is very good news!! Best wishes & well done! :)
"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 prairiegirl » Fri Apr 02, 2010 11:48 am

Wish you the very best in your recovery-- keep us posted!
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Postby ndwannabe » Fri Apr 02, 2010 3:55 pm

Thank you thank you thank you for posting! I come to this message bord to read about how people did every day.

This is our place of research!

The best recuperation and improvements to your wife!
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Postby moochsid » Sat Apr 03, 2010 12:34 am

Thanks all for your best wishes. So it's day 3 and we're just about to leave Katowice. Had a good sushi meal last night with the other 'guinea pigs'
I think how we all feel was summed up by Pierre, who said that after years of decline we can now think about the incline.
This was a bit of a last ditch attempt for us in that we feel we have tried everything under the sun. LDN,amalgam removal, chinese acupuncture hypnotherapy, BBD, IBT,FES, Esperanza peptide, nosebags full of supplements etc etc. And everytime we thought there might be light at the end of the tunnel it turned out to be just another oncoming train.
Still some slight improvements. Grip better- coudn't quite manage the chopsticks last night but then Iza is extremely double jointed and has always had problems with stuff like that. Energy levels and balance better but most importantly there is much more positive attitude. The person I knew and had lost is beginning to emerge from behind this cruel disease again.

Will update when we get home (British rail willing)
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Postby moochsid » Tue Apr 06, 2010 4:16 am

Well we're home and i was right to add the rider in my last post about British rail (or more accurately East Coast Rail) since the wheelchair assist people put us on the wrong train and only by double checking and a last minute frantic dash across platforms did we get home on time. Oh yes and Heathrow lost our wheelchair and we had to go miles to the excess baggage station to reclaim it.
The main reason to mention this, apart from a moan about corporate ineptitude, is that Iza took it all calmly in her stride, something that would have been unthinkable previously as she is/was extremely sensitive to stress. Something that has been a major distressing feature of her personality shifts and mood swings as her MS progresses .

So after a rather gruelling two days of travel she was still full of energy when we got home, again unthinkable previously when most afternoons I would have to lift her onto the bed to remain for four hours like a lifeless sack.

Her speech once slurred and confused is strong and 90% articulate.
She tucks into her food with vastly improved grip in her right hand which again previously would hang like a wet noodle down by her side.
Now she only transfers the fork to the left hand after some time, and some time it is indeed since her appetite seems to have tripled!

Eyesight remains the same as before, as does walking ability but balance is about 50% better. There is still the occasional caroming off the wall but at least I don't have to keep all the corridor doors closed anymore since before she would suddenly disappear from view as wall-walking meant falling through these vertical traps.

Writing is still near impossible and the bruising is still spreading rather alarmingly but there is no pain and the stent is only mildly disruptive.
So we are taking it still day by day and hoping that these improvements consolidate and there's no slippage.

Walking of course would be a great boon but for me at this moment just to have a happier and more confident personality was worth the whole escapade.

I know this is for another thread but out of the three patients we were with only one had the Doppler ultrasound although it's part of the package.
Whether this will be reimbursed or taken into consideration should a follow up be forthcoming remains to be seen. Although as has been mentioned elsewhere there is no firm procedure for that to be scheduled at present.
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Postby eric593 » Tue Apr 06, 2010 4:35 am

Glad you arrived home safe and sound. Glad things are going well. Can you please include your updates in the Tracking sticky at the top? That will ensure we can find your experience and continue to follow it in the months ahead.

Please continue to let us know how she's doing! Continue healing, and no more Omega 3's until after she heals!!
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Postby Rokkit » Tue Apr 06, 2010 6:59 am

So you're saying on some patients they are going straight to venography? That is very interesting.
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Postby ozarkcanoer » Tue Apr 06, 2010 7:08 am

moochsid,

Best wishes for you and Isa. I hope the healing continues !!

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Postby Vhoenecke » Tue Apr 06, 2010 7:46 am

Thanks so much for letting us know about your journey. I love the antecdotes. Glad to hear there won't be anymore falling through doorways.

Val
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Postby moochsid » Tue Apr 06, 2010 8:02 am

Rokkit wrote:So you're saying on some patients they are going straight to venography? That is very interesting.


Yes.Xia who had two stents remembers being gelled for Doppler ultrasound whereas Petebou and Iza didn't. Funnily enough, and i don't want to sound alarmist in any way, I went back into the hospital the evening after the procedure because I had forgotten to take out my copy of the MRV cd from the bag supplied by the MRI clinic and found my little plastic bag hanging on the door of the office where I had left it. I assume someone checked it before the venography but who knows?
I don't know if this leaves us with an ethical query or merely a financial issue since everyone pays for the full monty. It's something I intend to take up with the admin office in a few days after progress has been monitored a bit more and also whether they are booking for follow ups. In our absence Glasgow is up and running with the Doppler so we may well get the follow up there but if the venography itself is the deciding factor I'm not sure where this leaves people going on a step by step basis.(This is something I alluded to earlier in this thread).
Thanks to all for the wishes.
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Postby openmind » Tue Apr 06, 2010 8:51 am

I too had the alarming and spreading bruise down my leg and went back up to the clinic before flying home to get it checked out. The vein was closed but the bruise was spreading because of the blood thinners. 17 days after I still have a fair amount of bruising but it has sub sided considerably. I believe the doppler was only 50 euros anyway.( in response to your query) I also had the warm feet straight after the procedure but this has been coming and going for me as have my improvements, A bit of progress and then a step back again but I am convinced that it is heading in the right direction. I had sweaty feet one morning for the first time in years!!
Best wishes Jo xx :lol:
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Postby moochsid » Wed Apr 07, 2010 12:48 am

One week post procedure. Improvements have held except for massive tiredness.But as other people have noted a good tiredness with solid and hopefully refreshing sleep not the MS rubber mallett.
In all of the improvements noted so far I had overlooked some. Incredible when you start racking up the deficiencies how many there actually are. So, seemingly irradicated now are purple swollen right foot,swallowing and choking issues and 90% of leg tremor when standing.
Despite a barrage of alternative therapies and supplements in the last six months Iza had slid rapidly downhill but now I would say that we have wound the clock back a whole year in only one week. Sometimes I feel a bit nervous about publicising this in case the bubble bursts (or maybe more accurately the ballooning) and we come to earth with a bump. Don't know how I'd cope with a set back after this but am trying to remain realistic and take each day as it comes. Once again thanks for the support and eric593, yes I've hidden the Omega 3 till the bruising goes.
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