Jacek Kosteki

[1_sindy]

Hello everyone,We have made it home,MR G is doing great, but needs to learn to rest, so this is a fast up date on him.
1.legs are moving better not feeling heavy like before
2.can do the heal to toe walk with out much effort. and his balance is better as well , no more hands waving in the air.
3. can talk much faster and way way stronger voice now,(i'm going to have talking as much now).lol
4.his lower back has stopped hurting.
5.he seems to be able to walk on his feet better and he can now walk with out looking down to see where his feet are.
thank you everyone who has posted on this sight the information and support has been great.
Now for all the people we met there , and did not have there treatment by the time we left for home,we are waiting to hear from you, our thoughts and prayers and love are with you.keep safe and looking to hear from you all.Sindy

[1_sindy]

o darn typeoooo on the talking bit i mean he is talking more and i will have to talk less (like that is going to happen...lol)

[garyak]

thanks for the updates sindy, keep them coming.

[BrendaReqier]

Sindy, that's one of the things Bill noticed first in Poland, that my speech was better, then when I got home hubby said it really sped up LOL oh well, now I can speak my mind

[1_sindy]

Brenda that makes me laugh because now he has told me that he has things to say,and i guess i will let him talk now and besides now i can hear him.
He got very emotional when his grand son told him papa you sound better and ican hear you better .
Thank you Brenda for the pm'sthey made me feel like we where doing the right thing,and now i know we did.
Now he needs to rest and get over jet lag. talk to you all very soon
Sindy and MR G

[Whitey]

My brother's voice has improved as well. I didn;t notice it while we were there, but my parents did right away. They say he's not as "monotone" and has more power in his voice. I noticed it today, after going away for the weekend.

I'm not sure if it's an emotional/state of mind thing, or an actual result of the surgery, but either way he seems much happier now!

I really do hope to hear from some of the others we met who were scheduled to have the surgery after we left.

Glad to hear Gord is continuing to improve! I'm sure it will only get better in the coming days and weeks!

[1_sindy]

Hello everyone
Glad to hear your brother is doing better Whitye,Mr .G
is not doing well right now , he is fighting a cold as well, his voice seems strong still and he can do the walk still, but is acking all over sounds like the flue to me, or maybe the first blockage they opened has collapsed again.We will go see the gp and see what they say.The only problem with going any where out of country is the IF something happens kEEP SAFE AND I AM LIKE YOU NEED TO HEAR HOW THE OTHERS HAVE DONE .Sindy [/b]

[Bizzy]

I'm finally caught up on my sleep, after sleeping really well for the last two nights. Since having the procedure Friday night I'm feeling small changes like having more strength and less stiffness. When I took a shower yesterday, I noticed I could close my eyes without loosing my balance and having to hold on to the handle. I'm using my cane around the house instead of my walker and so far I don't feel like falling over.

The only disappointment so far was waking up with my sore back again. While in Poland I was not bothered at all. Maybe I overdid it yesterday to catch up with all the laundry. Well today, I plan on taking it easy and maybe even get a chance to look at the CD of my procedure.

I feel so fortunate to have had the procedure, and to meet all the wonderful people staying at the Hotel Arena as well as meeting Kate and Chris. We had a really good time and some great laughs. It was so funny then night we were all sitting outside by the gazebo having pizza and Asher said. "Wait a minute, we are supposed to be depressed as we have MS"!!!

Sue

[1_sindy]

Hi Bizzy was great to talk to you yesterday we are wishing you the best and lets keep intouch Sindy and MR G.good to hear how well you are doingxoxo

[drbart]

We're in Krakow after a week in Tychy, heading home to the States tomorrow. Our group of 15 was the last before Dr K and folk go on a well-deserved holiday.

It was very hot last week and the local hospital was inundated with heart attack and accident victims. The first two of our group had their procedures at another clinic. Not the best week to being doing more people than ever before, but Kate and Dr K's folks pulled it off for all of us.

It was great meeting and bonding with the other folk. I'll let others tell their stories, and we'll definitely keep track of each other.

As we have read about elsewhere, not everyone shows immediate improvement. The degrees of improvement below are *my* estimate based on what they were reporting before going home. It's been great, for example, to hear Bizzy has shown improvement since returning.

The below list is grouped semi-randomly, and stent implies angio.

P - 1 angio, marked improvement
M - 2 angios, subtle improvements

R - 1 angio, marked improvement
L - 2 angios, stent declined, nothing to report yet
S - 1 angio, nothing to report yet
M - 1 angio, 1 stent, some improvement
P - 1 angio, nothing to report yet

H - 1 angio, 1 stent, nothing to report yet
A - 2 angios, stent declined, marked improvement
J - 2 angios, more than subtle improvements
D - 2 angios, some improvement
E - 1 angio, subtle improvement

These folk were done late Sunday and came back to the hotel only a couple hours before we left for Krakow, so I don't much post-op on them.

S - 1 angio, 1 stent, marked improvement
D - 1 angio, 1 stent, dunno
L - 1 additional stent (a repeat engagement), some improvement

In short, 100% of this group of MS patients had venous constrictions, and to my knowledge nobody's Azygos needed treatment. Too early to tell regarding improvements, and it's really interesting how some happen so dramatically so quickly.

PS - Despite having a mix of Europeans, Canadians, and Americans in the group, *no* Canadians were liberated on Canada Day, and *no* American s were liberated on Independence Day.

[BrendaReqier]

Hi all, my last post didn't make it (I probably hid the wrong button) so I'm trying again.

I'm having a back slide day, not sure why other than I do know I have been over doing it somewhat (babysitting 1, 4 and 6 year old but they're so good) Slept good this morning but feel like this is the first time since June 11th that i feel actual fatigue and not just tired. My legs, that were working great, are rubbery yesterday and more today. I'm hoping that some rest and destress time will help. Also low grade head ache in the back of my head.

I think this is one more example of why we need to fight for follow up care at home, but properly trained radiologists (right equipment and soft ware included)

All in all the brain fog has lifted, hearing is much better! balance is good.

When the dr. tried to access my azygos, he said there was a physiological abnormality that prevented ballooning but that he felt the blood flow was sufficient. It's interesting that no one has reported that I know of, having angios in the azygos. I know dr. zamboni also said that accessing through the left vein in the leg gave much better access, so I'm wondering if that is why. Did anyone on the list have ballooning in the azygos?

Ok, hubby is taking good care of me today, jumping in to switch hit with babysitting (not actual hitting of course!), so I'm very grateful for that one I hope everyone is doing better, I do believe that the vast majority of us see smaller, and unexpected (not necessarily on our wish list) improvements. A friend did do some research and was told by a dr. that some improvements could take 3 months to a year to appear. So...I'm still hopeful!

Brenda

[prairiegirl]

Hang in there, Brenda! It sounds like others have had some up and down days, so hopefully you will feel better soon. You are so right about it being important to have local follow-up care. Best to you in the days ahead!

[BrendaReqier]

Ty for the well wishes, nothing like a cyber boost in confidence from our MS family I am sure it will improve, but there is the panic issue when things start to go south a little, with no follow up here where I am. Hubby usually talks me though it (no you're not clotting, no it didn't restenos etc. LOL)

I still would like my azygos addressed more, to know for sure what's going on there. I also think Dr. Zamboni has said now that even the lower lumbar could be part of the puzzle (I had a trauma there years ago) so I know the learning is still going on. I do believe that learning while treating is the best way to move forward, and I also realize I may need another procedure sometime in the future. I think that's something we all have to consider to be a possibility. I went into this thinking, by then we will have won the war to have testing and treatment available in our homelands....so everyone, keep vocal!

[BrendaReqier]

I'm just curious, did anyone who went to Tychy have angioplasty in their Azygos vein?

[Bizzy]

Hi Brenda,

After my procedure, Dr. K. said that my azygos were fine and when I checked the procedure on CD, it does show him going in that area. Although none of our group had any angios of the azygos, I believe he does check it.

Did you or anyone else have any headaches. I had the procedure Friday night and now I am on my second day of having headaches. Since I'm on Clexane, Plavix and aspirin, I'm not sure if I can take anything for the headaches.

Sue