Dr. Kostecki September 12, 2010 ?'s for those who have gone

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

Dr. Kostecki September 12, 2010 ?'s for those who have gone

Postby WheelieBob » Thu Jun 24, 2010 6:07 pm

We just wanted to share that we got an email from Katherine tonight offering us some dates in September. We have picked September 12th for the procedure. We will probably go around the 4th or 5th, they want us there by the 7th; and we'll stay until the 16th or so, they want us to stay at least until the 14th.

My first question -- is anyone else going the same time?

My next questions have to do with travel -- has anyone flown out of Toronto and if so, what airline did you use? Has anyone used LOT Polish Airlines? They have a direct flight so that is really attractive. Has anyone used them?

Next question is money -- when do you have to pay? Can anyone give us any ideas on what the incidental costs are once you get there? For example, what does it cost for a meal?

Next question is touring -- while we are in Poland we would like to see some of the country. Does anyone have any recommendations for what to see and do?

Next is communication -- do you recommend bringing your laptop to keep in touch with those back home? If not, is there an internet cafe or something close by or at the hotel?

That is probably enough for now. We are reeling in emotions right now -- excited, scared, happy, everything you can think of rolled into one. We probably won't get much sleep tonight.

Mrs. Wheelie
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Postby Whitey » Fri Jun 25, 2010 1:15 am

Don't worry wheelie Bob, you have plenty of time to plan and prepare. Katherine is so nice and helpfull and so is every one out here. they all are genuinely interested in helping people.

To start, bringing your laptop is a good idea. I'm writing this from my room in the hotel right now. Free internet (wireless and wired in the rooms). I've found it very helpfull to let friends and family know how we're doing and give them updates.

We flew AirCanada/Lufthansa out of Toronto to Frankfurt and then on to Katowice. Others flew direct from Toronto/Montreal into Poland. Nobody seems to have any major concerns with the flights. I can;t comment on LotPolish, but we're flying with them into Warsaw and then direct back to Toronto. I'll let you know how it goes.

You need to pay for the hotel/tests/etc. before you go. Not sure when exactly, but you can ask Kate when she needs the money by. We set up a wire/bank transfer and paid about a week or two before hand.

Most things are pretty cheap here. A 10 minute cab ride will cost about 10-15 Zl, a fine meal FOR TWO will cost about 70-100 Zl, a beer about 4-8 Zl. One Zl is about 0.32 CAD right now. The breakfast is a free buffet, and is pretty good. Kate can arrange cabs and things for you for a bit cheaper than you can get on your own, so it's best to ask her about that just before or after you arrive.

As for things to do, there's plenty! We went to the Tysky Beer Brewery (about 10 mins from the hotel) yesterday for a free english tour and they give you a free beer at the end. It was pretty awesome. Today we're taking a day trip to Krakow to see the old town. she's also arranged for some of the women (and some of the men too!) to do a shopping trip to the 2 storey mall in Katowice, and has arranged for wheelchairs for the MS'rs, as it can be very tiring. Tomorrow after our Neuro consult, about 5-7 of us are heading to Aushwitz to see the museum, and others with more limited mobility are going to see the Castle Museum in Pszcyna. There's also a mall nearby the hotel, salt mines, and coal mines in Zabrze (the town where the MRI's are done). You don;t have to do anything, but Kate will organize pretty much anything you want to do. As I said they are so helpfull here! They just had someone come into the hotel to get blood samples from my brother, we didn't have to go anywhere!

Honestly, you don't have very much to worry about. A lot of people here speak some english, but a little Polish is helpfull (I brought a phrase book). If you have any other questions, just ask here or in the Kostecki thread!

-Whitey
Last edited by Whitey on Fri Jun 25, 2010 10:05 am, edited 1 time in total.
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Postby WheelieBob » Fri Jun 25, 2010 2:59 am

Thank you so much for the info Whitey. It is very helpful. It's nice to know there are things to do and time to do it while you are there. Thanks for the info about the laptop, I will definitely bring it.

Good luck on your procedure :D We are proceeding with cautious optimism. WheelieBob has been spiralling down for the last while so we just can't wait until Canada gets its act together and offers this at home.

Good to know we will be in good hands.

All the best
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Postby solney » Fri Jun 25, 2010 9:30 am

hi there, we were offered the treatment dates you received. i emailed with some basic questions and have not had a reply, this was 6 days ago. i am wondering if you experienced this . i was thinking i should call them by phone, but i dont want to be be to aggresive if the email delay is normal. my mother is an 8 on the edss scale , so we dont have alot of time to wait for canada to get with it.
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Postby Whitey » Fri Jun 25, 2010 10:19 am

solney: Please be patient with them, they are extremely busy right now as there are about 10 groups here now, all with different dates for appointments and things to do that they are organizing. On top of that they are receiving so many e-mails every single day that they cannot keep up with everybody on a timely basis.

The situation is this, Dr. Kostecki is a medical researcher at the university and is working there full time. He is doing this study outside of his own work, and therefore the doppler and procedure will be in evenings and on weekends (many are getting the procedure tomorrow, and the rest on Sunday!). Kate and her husband are only travel agents, who are working for free (except for commissions from booking the hotel rooms) so that they can help change peoples lives and because Dr. Kostecki is very busy with a full day of work then this study. Kate and her husband are not doctors, and probably won't be able to answer all your medical questions without first talking to the doctors.

Her priority right now is getting everybody ready for the procedure & consultations tomorrow and Sunday, and since your procedure isn't until September, she may take some time to get back to you. If it's something we can help you with, feel free to ask or message me. Otherwise, please be patient and understand that she is doing enough work for three or four people right now!

The Doctors here are fantastic, nothing like what you expect from Canada. Here, you can actually sit with the doctor and talk to him and ask him questions and he'll listen to you answer you! They want you to feel comfortable and trust them, and are genuinely concerned with helping.
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Postby WheelieBob » Fri Jun 25, 2010 10:19 am

Hi solney. I was just offered these dates last night so I don't know how long it will take to get a reply. I emailed back accepting this date. I'm not sure if Kate will confirm or not.

I know what you mean about not having the time to wait. Hubby is (my assessment) about 6.5 on the EDSS scale and obviously, not getting any better. We are going for physio Monday so I am going to see if the therapist can do an assessment before we go so we have something by medical personnel to compare to when we get back. She told us before she would do it so I don't see a problem. We'll probably wait until closer to the time to do the assessment.

I don't think it would hurt to call. I think this Kate person is very nice by the sound of things. Possibly she is just really busy with the group she has there now.

Keep us posted. I hope your Mom is able to go for the treatment. It is difficult being the caregiver or a family member because you feel so helpless.

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Postby Whitey » Fri Jun 25, 2010 10:28 am

I should add about the things they are going to need from you.

You'll need to let them know your basic info (name, date of birth, etc).

You'll also need to let them know if you have any implants in your body and about previous surgeries. Kate will send you a form to fill out and return. If you've had implants (my brother had a rod inserted in his leg), you'll need to get a note from your doctor explaining it. It will need to say what they did, what materials were used, when and where they did the surgery. Also, they need to confirm that an MRI will be safe with that implant.

Once you get all that submitted, she'll confirm your dates and then you can book your flights. Once you've done that, you need to pay her for the hotel, transfers, & tests. You pay for the venography and angioplasty/stenting after the procedure.

Make sure you've had your testing for Lymes Disease. It should be the Western Blotch method. Also, it's helpful to bring your medical history, MRI's, neuro consults, etc with you, as this is part of a clinical study.

I've probably missed a few things, but this is a start anyways. Hopefully it helps some. Again, feel free to ask us questions in here or the Jacek Kostecki thread and we'll try and answer them to take some of the load off Kate and her husband.

Peace,
Dave
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Postby WheelieBob » Fri Jun 25, 2010 10:31 am

Hi Whitey. More very helpful information. We need to be tested for Lyme Disease? How do we do that (Canadians)?

I will check with my GP about the records. There is no way the neuro would provide them :roll:

We have already submitted the basic info to Kate.

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Postby solney » Fri Jun 25, 2010 11:18 am

ok i do understand all of this and am thankful there is so many helpful people out there. we will get on with everything we have to on our end and im sure there is more question i will need to ask. thanks agian for the quick reply and goodluck.
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Postby Billmeik » Fri Jun 25, 2010 11:36 am

ya Id try lot. dont have muvh good to say about lufthansa or german customs..
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Postby Whitey » Fri Jun 25, 2010 1:42 pm

WheelieBob wrote:We need to be tested for Lyme Disease? How do we do that (Canadians)?

I will check with my GP about the records. There is no way the neuro would provide them :roll:
Just go to your GP and ask to be tested. They will test in Canada, the only question is what method they use. There are two methods if I'm not mistaken, one is less expensive but is not very reliable. The other is more reliable and of course more expensive. They have seen (a) patient(s) here that tested negative at home, but positive here. If it's Lymes, which is the same symptoms, it's a 6 month antibiotic to get rid of it. Will save you time and money, definitely suggest it. To get the proper test here is an extra 450 Zl, or about $150 CAD.

As for the medical records, I don't think many people have had much trouble with their neuro & MS doctors. I believe, and again I'm not positive, that they are required to give you your information. Try, and if they refuse, raise a stink. You are entitled to your medical history.

- Dave
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Postby WheelieBob » Thu Aug 19, 2010 10:36 am

Just wanted to bump this topic back to the top again. Anybody scheduled for Poland around this time? We have just over two weeks until we leave so we are getting pretty excited. As we have been advised here, Kate has arranged everything and has made the preparation very stress free. WheelieBob continues to deteriorate so we are really happy that we made the decision to go for it.

Thanks all for your useful information on this and other topics. Hopefully we can meet some of you in Poland.

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Dr. Kosteckj

Postby Gordon » Sat Aug 21, 2010 12:40 pm

The best experience of my life. The doctors and care were fantastic, just fantastic.

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Postby WheelieBob » Mon Aug 23, 2010 8:34 am

Thanks Gordon. Those are very encouraging words.
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