Richard in Poland

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

Richard in Poland

Postby Richardk » Wed Mar 24, 2010 2:24 pm

I have been slow in posting the details of my trip to Katowice, partly to get a better assessment of where I stand (lol), and partly out of sheer inertia, but here goes.

Left mild Vancouver on February 7, and arrived in blustery, cold, and snowy Krakow the next day, travelled via Lufthansa and LOT Polish airlines, who were both excellent at getting me in my wheelchair to the right gate at the right time. Picked up at the airport by Marek from Euro Medic, who turned out to be as well as our driver to the various medical sites, an entertaining guide and raconteur...then to Qubus hotel in Katowice, our room had a disabled washroom, much appreciated, and has a great breakfast buffet ...had the pleasure of meeting Alby who was there for the same treatment, and his son Allan ....rested on Feb 9, and then to Zabrze (abt 35 min away) for MRV....next day to Euro Medic clinic, where Dr Simka did the ultrasound testing. Diagnosed with stenosis in R Jugular and azygous veins, and treated with angioplasty immediately after....stayed that night in the clinic with Alby, and a fellow from Krakow undergoing the treatment (there also was a woman from Ontario that day)....the next day after a talk with the doctor, (I recommend having as many questions as possible for the doctor at this time, as it's unlikely you'll see Dr S again) I went for an eye test, presumably as a comparison to any later improvement in visual ability...the doctors all speak excellent English, support staff less so, and my Polish is abominable, limited to Dzien dobry (hello) and Dziękuję bardzo (thank you very much), despite having a Polish father who, serendipitously, lived in Katowice between the wars...we could have returned home the next day, but as there had been some confusion as to how long I needed to stay we ended up in Katowice for an additional 3 days...the 5 days that Euro Medic books for you is all that's needed.

For me , there has not been a dramatic improvement in symptoms, but there have been subtle changes that hopefully will improve over time....in general leg pain and spasticity has been reduced, making me able to exercise my legs, and thus to lurch about a bit less terrifyingly, and I can now sleep on my back, whereas previously difficult due to leg twitches...there has been a minor but noticeable reduction in fatigue, I am always self assessing to see whether I have a cold as it will increase fatigue, but as my immune system is working in overdrive, the symptoms of a cold are not always evident.

I will update if and when I note any developments.

Richard
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Postby Ruthless67 » Wed Mar 24, 2010 4:01 pm

Hi Richard,

Great to read your update. I would "Love to dance in the street" after my procedure, but we all need to be realistic in our personal expectations, because we all have such varied symptoms and different vein issues.

I was trying to explain to my husband how a MS person has to run so many thoughts through their brains when they notice "something" isn't quite right. Is it MS? Do I need to have it checked? Will it go away on it's own? Do I need to get a prescription or something? Is this the start of a flare-up or new exacerbation?

So I can only imagine how hard it is for the post-stentors. Not only do you need to rest but you now have to go through the side effects of coumadin while trying to self assess any improvements or set backs. And somewhere in the back of the mind is the scare that you might re-stenois.

I wish you many delightful little surprises as the days, weeks and months tick off.

Lora
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Postby QueenMum » Wed Mar 24, 2010 4:16 pm

Richard,

Thanks for your post.

We all need to tell it like it is... good or whatever. Your insights are valuable to us all.

Wishing you great improvements soon.
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Postby bluesky63 » Wed Mar 24, 2010 4:48 pm

This is very encouraging to read. :-) I am making some comparisons -- I am also 47, and I use a wheelchair, and my hope is not so much to see major physical improvements as to halt any progression and then have a base for potential rehab.

I would also reeeeaaaally love to have relief from the "brain" symptoms -- headache, confusion, pressure, dizziness, cranial stuff, fatigue, etc., that seems like it relates to CCSVI. I am really curious if you are seeing relief from this sort of thing?

I wish you all the best in your recovery and hope all the improvements you notice get better and better! :-)
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Postby Johnson » Wed Mar 24, 2010 11:34 pm

Fantastic, RichardK! I hope that you have incredible improvements, even if they take some time.

Best of luck, and happy healing.
My name is not really Johnson. MSed up since 1993
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Richard was in Poland!

Postby LSITC » Thu Mar 25, 2010 10:12 am

So good to read your blog and thank you for sharing it with us all.
"May the force be with you"

Keep up the good work
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Postby Enya » Thu Mar 25, 2010 10:37 am

Hi Richard,

Thanks for sharing your experiences from Poland. We are going in May for a test too. All The Best to you. Please keep us posted.
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Re: Richard was in Poland!

Postby Richardk » Thu Mar 25, 2010 4:48 pm

LSITC wrote:So good to read your blog and thank you for sharing it with us all.
"May the force be with you"


Thanks for your encouragement.....As I attempt to follow Terry Wahl's diet to allow for faster blood flow, http://terrywahls.com/index.php?page_id=281# , by eating lots of vegetables, including 6-9 cups of kale and broccoli per day, a more apt aphorism would be, pardonnez-moi mon francais, "may the farts be with you"

Cheers
Richard
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Postby Richardk » Thu Mar 25, 2010 5:16 pm

Ruthless67 wrote:Hi Richard,

Great to read your update. I would "Love to dance in the street" after my procedure, but we all need to be realistic in our personal expectations, because we all have such varied symptoms and different vein issues.

I was trying to explain to my husband how a MS person has to run so many thoughts through their brains when they notice "something" isn't quite right. Is it MS? Do I need to have it checked? Will it go away on it's own? Do I need to get a prescription or something? Is this the start of a flare-up or new exacerbation?

So I can only imagine how hard it is for the post-stentors. Not only do you need to rest but you now have to go through the side effects of coumadin while trying to self assess any improvements or set backs. And somewhere in the back of the mind is the scare that you might re-stenois.

I wish you many delightful little surprises as the days, weeks and months tick off.

Lora


Thanks Lora

While I have not yet signed up for Tango lessons, they are at least in the back of my mind....I understand fully your comment about trying to explain to pw/oMS that something is amiss, when you can read their mind saying "But you look perfectly fine", or trying to explain the disconnectedness of your fatigue when they are likely thinking "I also get fatigued".

I am looking forward to the "delightful little surprises", however small they may be, and thanks for your encouragement....btw when my wife Ruth is not home, I also am ruthless.

Cheers
Richard
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