ComfortablyNumbs leaving for Poland

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

ComfortablyNumbs leaving for Poland

Postby ComfortablyNumb » Sat May 22, 2010 9:32 am

Well the time has finally come around and our flight leaves this evening getting us to Poland around lunch tommorow. :D :D It's hard to believe since it's been in the works since December.

I want to thank everyone on TIM's for your sharing of thoughts and information which has made this all possible and a heck of alot easier. I have read so many posts on this site over the past six months that your names have all become so familiar. :D
I will not be bringing a laptop with me so don't know where and when I might be able to post some updates, which I do intend on doing when I finally get there.

Cheers all :wink: ,
Stephen
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Postby babiezuique » Sat May 22, 2010 9:38 am

I Stephen!

I just received news from Eromedic, i will be there for the 19 of june!
I can understand how you are feeling now;)

We will be happy to ear from you while you are there... and follow your polish adventure!

Can you tel me with wich line (plane ) are you flying?
Barbara
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Postby prairiegirl » Sat May 22, 2010 9:46 am

Wish you the very best-- look forward to hearing your results!
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Postby ComfortablyNumb » Sat May 22, 2010 10:01 am

babiezuique wrote:I Stephen!

I just received news from Eromedic, i will be there for the 19 of june!
I can understand how you are feeling now;)

We will be happy to ear from you while you are there... and follow your polish adventure!

Can you tel me with wich line (plane ) are you flying?
Barbara

Hi Barbara,

We are flying Air Canada/Luftansa transfering in Munich.
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Postby babiezuique » Sat May 22, 2010 1:36 pm

Thank you Stephen!
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Postby ozarkcanoer » Sat May 22, 2010 1:44 pm

Stephen,

Good luck and bon voyage !!! I hope you get help for your MS symptoms. I will be following your story.

ozarkcanoer
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Postby Rokkit » Sat May 22, 2010 4:35 pm

Good luck, Stephen. And you get my vote for most awesome TIMS username ever. :-)
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Poland Procedure

Postby fraser » Mon May 24, 2010 8:15 pm

Hi!

Hope all is going well. Thinking of you lots - can't wait to hear all about
your experience. Hope your time in Poland is as wonderful as ours was.

Wishing you the very best,

Fraser
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Postby mags4short » Tue May 25, 2010 1:04 am

Good luck Stephen,

keep us posted :)

Mags x
Alone we can do so little, together we can do so much :)
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Postby ComfortablyNumb » Wed May 26, 2010 8:24 am

I had my procedure and I did lose some of the numbness in my right hand(my least numb extremity) and the colour seems to be better. Feel good after the surgery. They did an angioplasy of the left jugular and the brachiocephalic trunk. But they couldn't stent the brachiocephalic trunk because it is too close to the heart. So they were not happy with the results. The treatment at the hospital was great and the procedure was a breeze(AFTER ALL MY WORRYING). i AM NOT SORE AT ALL!
We visied Auschwitz today and are planning on going to Krakow tomorrow before we fly home. I WILL DO A MORE DETAILED DESCRIPTION WHEN i GET HOME.

The atmosphere here has been very positive and it is great to meet so many other Canadians (and Steffi)to share the experience with.

Stephen :D :D :D
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Postby fraser » Thu May 27, 2010 7:26 am

Hi Steve,

So glad they were able to do an angioplasty of the left jugular & brachiocephalic trunk. Maybe the angioplasty will hold and it won't need stenting?? It can often take up to 6 months to feel the improvements.

So glad things went smoothly and you're doing a little sightseeing. Hope you
get to our favourite restaurant in Krakow (although the only one we went to in Krakow!).

All the best,
Fraser
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Postby ComfortablyNumb » Sat May 29, 2010 4:38 pm

Hi all,

I am home from Poland now and missing all the great people we met there. I am feeling good and have no discomfort except for the itch from hair growing back from shaved areas 8O.
The group at Euro Medic really have their act together. We missed our connecting flight in Munich, on the fight there, and found our phone didn't work so we had no idea if we would have someone their to meet us when we finally arrived 4 hours late. It was so nice to see Kris there when we arrived :D :D . It would have been nice to have luggage as well 8O. When we arrived at the Qubus ther were lots of people in the lobby talking and sharing their experiences from the previous weeks procedures and giving us tips about what to expect. It seems it was Canadian week and we also had representatives from New Zealand, Italy & France. I had my eye test & MRV Monday and on Tuesday went in to the hospital with two others. We were prepped and had blood taken and had the doppler given by Dr. Simka. As I had expected from my scans at home, it was my left jugular that was the problem. They did a balloon angioplasty of the left jugular vein (balloon invatec 12x20) &the Brachiocephalic trunk (balloon Cordis16x40). I was told by the vascular surgeon that it wasn't very succesful as a stent was needed in the BT but it was not safe to put one so close to the heart :cry: :cry:
I was told that it is more of a cardiac issue.There is still quite a reflux of blood through collateral veins happening so so I will have to see if I can have a specialist here look at it (If there is anyone at all willing to touch it). I would post the images but I have not a clue how to do that.
I am really happy I went to Poland and had this done. I hope and feel that there will be benefits from having the angioplasty alone done even though there is still a ongoing problem. Knowing the problem is huge and the first step in getting it resolved. I would count this as a positive experience and would do it again in a heartbeat. It was great to see all the positive results others were having and knowing this is for real.
Thanks to the team at EuroMedic, the patient nurses(for putting up with us needy foreigners) and Majec, Kris and Peter for hauling us around.
:D :D
Cheers
Stephen
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Postby eric593 » Sat May 29, 2010 8:03 pm

Glad you had a good experience, Stephen. Hopefully you can find a cardiologist or someone with some expertise now to deal with the problem that couldn't be solved there.

I haven't seen the answer to this I don't think, but when they take your blood, what blood tests are they doing? Thanks.
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Postby ComfortablyNumb » Sun May 30, 2010 12:17 pm

Hi Eric,
The laboratory tests they list are: White & red blood count, haemoglobin, platelet count, INR(International Normalized Ratio), aPPT (bleeding tendencies), Na+(sodium), K+(potassium),Cl(chloride), Glucose, creatinine(kidney function), HBs (hepatitis B surface antibody) and Rh (bloodtype)

They also injected me with a blood thinner (which I guess was Fraxiparine since I'm on it for 1 week after), and gave me three bottles of IV drip prior to the procedure.

You have to remember to ask as many question you can when the doctors are there because the nurses speak little to no english. You are awake throughout the procedure and they explain things but you can only see at the end when they finish and pull the xray screen away from your head/neck area and show the screen and what they have done.
:D :D :D
Cheers,
Stephen
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Postby mackattack » Tue Jun 01, 2010 8:50 am

Why are they looking at the brachiocephalic trunk? Is that an area we should have our NIR look at? Husband just had angio with cutting balloon on right jugular...azygos is fine...wondering if we are missing something...
Just curious on why the brachiocephalic trunk, since my understanding that is an artery.
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