Jacek Kosteki

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

Postby Whitey » Fri Jul 16, 2010 7:32 am

I got an e-mail from Milva a few days ago, and she mentioned that Sharrukin is slowly progressing, but doing well. You can find their contact info on the website they are setting up here: www.ccsvipoland.info

- Dave
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Postby BrendaReqier » Fri Jul 16, 2010 11:17 am

wow a web site! I wasn't sure Dr. Kostecki was going to continue doing procedures after this fall when his study was completed, so I didn't know if I was allowed to refer people to him. A couple of the links like 'the procedure' didn't work for me, but this is great. We can share this link with people/

I hope Dr. Kuzmic is feeling better now. Kate if you're reading, a big hug to you and Chris!
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Postby hh » Fri Jul 16, 2010 11:24 am

hello brenda and everyone,

hope your day is starting out right. very sorry to hear you had rough weeks just after post-op. glad that's over. now we retrain brain signals and adjust to the changes. ooh, so sorry for the big black/blue mark. glad the bruising is almost gone. i'm counting down my last 2 remaining shots. still worth it, that's my feeling, too. "flow baby flow". i just revisited my video with a friend and reconnected with my veins. :) i also need to strategize my GP Appt coming up soon. want their to be cooperation and care now that this has been done. any best advice with approaches?

going to try a swim today. hope to revitalize myself by re-working to ne and strength. rah, rah. so much office work to do, too. back with medical/other files to refile, and organize, etc. busy, busy. :) must get to errands.

have a lovely summer day!
-hh
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Postby Billmeik » Fri Jul 16, 2010 11:42 am

they need to put more up about the docs
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Postby BrendaReqier » Fri Jul 16, 2010 12:10 pm

hh good luck with simming, with all the rain here we can almost swim to the truck! good to finally get the shots over with!

bill I agree, I know it just went up, but more info would be good, and the couple of links that didn't work for me, did they work for you?
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Postby Bizzy » Fri Jul 16, 2010 1:42 pm

I have had so many people ask me about getting in with Dr. Kostecki that I put the information on my blog. I wrote this blog to update my family and friends on my progress but if it can help other people then I don't mind sharing. Here is the site: http://soobiz-live-love-laugh.blogspot.com/

Sue
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Hi to All

Postby Katarzyna » Sat Jul 17, 2010 10:29 am

Very hot summer (temperature 37 C per day, and litle bit less in the night) :( Is difficult time for children, adults and seniors. For happy all came back to home. In Poland stay only Sydney and Diana. They spends time in the mountain, where is for sure cool and nice. Dr K (the first one is on holiday), the second one stay in the hospital (recovery). I apologize for the delay in answering on all letters. We have very hot season in the office. Today is the first day off. I have a few information: if you see bruise on the body is normal reaction your system on heparin and others pills. Is very important to drink more than 2,5 liter per day and never forget take prescribed medicine. I'm wondering all changes. Dr K will send all form with many question. I'll send you copy of blood test result (for Lyme)

All the best
Kate
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Postby BrendaReqier » Sat Jul 17, 2010 10:58 am

Hi Kate! It's wonderful to hear from you! I was going to write an email but I know you have so many these days. How is your dad?
Yes Sue was telling us in Poland how important it was to drink a lot of water, my bruise is almost gone now. I did not start bruising until the last 3 shots, but they are all done now. How is chris?

sorry it's so hot in Poland, it's warm but it rains a lot here. I joke that I'm rusting (iron in the brain). I'm happy that dr. Kostecki is taking a holiday, it's much deserved as you should take one too! I hope Dr. Kozmic is feeling better and will be home soon.

I will watch for the forms that Dr. Kostecki wants filled out. You take care and try to take some time for you and Chris. HUGS!!! to you!

Brenda (and Guy)
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hello from sindy

Postby 1_sindy » Sat Jul 17, 2010 5:25 pm

Hello kate and Chris how are you?
It is great to hear from you and glad you have a day off , you need to rest as much as the people that are treated. xoox
Hope your Dad is doing better.
You can send Brenda and my self some sun any time, we have been home for 15 days now and my feet are webbed because of the rain.

We hope the DR is feeling better and has a great recovery. Please tell the Dr we are all thinking of him and wishing him well.
Great to hear from you Kate and hope it cools down for you there.
Sindy and MrG sends you a big Hug
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Postby Malinda » Tue Jul 20, 2010 11:07 pm

:lol: HELLO EVERYONE,
I'm sorry for not posting earlier, as my Dad noted. we went on a family camping holiday and just returned last night. WOW - what a crazy month but very exciting. It was soooo great meeting all you wonderful people and sharing so many good times together. It was such a great, worthwhile trip. I've been reading all of your comments and I'm glad to hear that everyone is doing well for the most part. Sorry to hear of Mr. G, Edith and others who are under the weather.
News from me....I did notice some immediate changes (better circulation, less stiffness, lighter legs, weight gain (oh..I don't think that's from the surgery but just increased food intake while in Poland LOL). Since returning from Poland and heading straight to Penticton in 33 degree weather, I don't seem to have the same initial benefits as mentioned above). I pretty much have returned to my pre-surgery state. I think I just need to get back into my swing of things before I can accurately gauge how I'm doing. I don't expect immediate results - give it 6 months to a year to see what happens. No worries but I wish I could mention better results.
I had the lovely headaches as well, lasted about 1 week but feel pretty much "Normal" now - or as normal as I get. Bruised like heck with the stomach injections, glad it's over. Did anyone get bloated as well? maybe that's just the extra weight from indulging in Poland cuisine.
I plan to see if I can follow-up with a doppler in my neck of the woods - I'll touch base with you Sindy. It makes me a little antsy that if I get re-stenosed or if I totally "blow" my stent out of place, I don't know or don't know where to go. I met an MS'er at Katowice airport (from BC) who just had a second surgery with Dr. Simka as she re-stenosed. Her first Liberation treatment was in April. Apparently, she said her face went bright red like a tomato so she knew something was wrong.
I wish all of you the best in the upcoming months and keep the blogs rolling - it's great to hear how everyone is doing.
Have a great summer!! Cheers, Malinda
PS: Sue - I still laugh when I think of the English speaking nurses! I think I laughed so hard that I had to stay an additonal 5 hours in the hospital - thanks for that!!!
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Postby BrendaReqier » Wed Jul 21, 2010 9:27 am

hi Malinda, kate and Chris had us laughing so hard one night, I asked if they had ever heard the saying 'it only hurts when I laugh' and told them it was so true!

I slid post surgery too, but jet lag is also something we need time to get over. I worry about the stent and if it's staying open all the time. I did manage to get a doplar booked to check, but it's not for months after the procedure. I know Dr. Kostescki recommended a check up after 1 month. I haven't been feeling great lately, but I agree it takes time and we still have to avoid stress and over doing it. I finally slept for 9 straight hours last night, and that helps!

I have a busy couple of days, then I'm flying to BC for some much needed relaxation! Glad you made it home safe Malinda, just take it slow and try to let your body adjust to the changes in blood flow etc. Oh ya...I'm really good at dishing out this advice, not so good at taking it LOL.

hugs all :)

Brenda
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Postby Wallwalker » Wed Jul 21, 2010 2:21 pm

Hi Guys, I am away to Tychy shortly but am disheartened by, what I perceive as being indifferent results. It appears that some people have good results then, either get on with their lives and stop posting, or revert. I hope I'm wrong but wonder if its worth the emotional investment. The sticky consistently at the top of the CCSVI board is the number of people with no benefit, Help me beat my growing cynicism. Been here before with other treatments. BW WW
SPMS 20years. EDSS 6.5
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Postby BrendaReqier » Wed Jul 21, 2010 3:38 pm

WW, think of it this way, if you have a serious blood flow restriction in your jugular (draining unoxygenated blood fro the brain), wouldn't you want it fixed? I know most of us are not instant miracles, but baby steps. I fully expect to have to have another procedure at some point since they are continually learning about how involved more of the vascular system is. I do know Dr. K is now using 2 stents if necessary, instead of 1 (I'm pretty sure) and it takes time when you consider how long it took for the damage to build up. Also, as with many of us, our little tributary vessels were trying to compensate, and it takes time for the body to adjust to flowing properly. I still have benefits that haven't gone away, but still have some issues too. It's not a cure, it's a treatment that I believe will someday lead to a cure.
I know that sounds ambiguous, but that's the best I can tell you. Other than you will love Poland, take time to enjoy the people and the food.
Brenda
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hello from sindy

Postby 1_sindy » Wed Jul 21, 2010 5:02 pm

Hello everyone and welcome back Mel
Ican't wate to hear from you.

WW i am with Breand on how things are in peoples bodys, i am the wife of MRG and for a while he was not doing as well but like Brenda said and tones of others they (any one that has had the treatment needs to rest and time to heal) and MrG didn't.
We had a long flight home like most and then he had a bit of a fever for a few days then lost his voice.

Good news is he is over all that now and things have got better again, he can still do the walk,cross his legs again, is not thinking for words and talks much faster, heat seems to not bother him as much and,balance is tones better again, so it all takes time .
He now has low blood preasure so im sure that his body has to get in toon with its owen bad self.....lol.
I do think we all want to see changes right now but it took so long to get messed up im sure will take just as long to see the good things, they might be small things but heck of a lot better then before the treatment.
I do know we are very happy with going to poland and that we would do it again at a drop of a hat.
I also think people are trying hard to let them selves rest before posting.
I have talked to most who where there with us, and they all have had a few ups and downs and still have some things happen that have been great for them. and Would love to hear more from everyone.
have a great day People and enjoy the small things so far (cuz it is all good )
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Postby Bizzy » Wed Jul 21, 2010 6:30 pm

Welcome back Malinda, it is so good to hear from you. Leeann mentioned in one of her messages how we had some good laughs in our room that night. Laughing may be a reason for you having to stay longer but I also think that they took your bandages off way to early!

I was just replying on the other thread that Martin has re: Brit going to Poland. Martin has posted his video, check it out! I also replied there on how I'm doing like my balance being much better and having more energy.

Now that you are back from camping, you must take the time to rest and let your new blood flow do some repair work. Big hug to you and your mom.

Sue

P.S. Yvon is having Tyskie withdrawals!
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