Mutley goes to Poland, and returns home liberated.

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

Postby colapesce » Sun Dec 27, 2009 3:11 pm

hi Stevie,

Here is Dr. Simka's email address... mariansimka@poczta.onet.pl

Good luck!

b
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Postby Mutley » Thu Dec 31, 2009 8:20 am

Johnson wrote:It is good too, to know that Dr. Simka, et al, actually exist. Like quite a few others, I have a tentative booking for Spring, but find myself waiting for the other shoe to drop; clinic to be shut down, doctors burn out, or something that will preclude my own treatment.

Thanks Johnson, hang on in there my friend as it’ll all come good in the end. I think I was really lucky to get in when I did as things seem to have gone really busy for Dr Simka within a few days of my getting an appointment through, so I know it must be hard for you to now be waiting patiently. On the plus side, this potentially has the advantage that treatment and diagnostic processes will be even more refined by then.

Brynn wrote:What is so exciting for me is that I also was dx in 1998 with optic neuritis, went to SPMS in 2007 and am just now becoming overly familiar with my wheelchair right now, so to hear of all your gains when your story is so similar.....all I can say is YYYIIPPPEEEE

Thanks Brynn, best of luck to you when you head over in September. I think the weather will be much kinder to you then it was for me :)

pgm1 wrote:I was wondering if Dr Simka told you how they decide if a stent is needed or not,i do not want to have a stent put in unless i have to.How did you feel about Stents

Hi Pam, I think they decide whether a stent is needed depending on the severity of the stenosis. So if a vein is very narrow then they are probably more likely to recommend a stent. I would have been quite happy to have one stent fitted but would have been less comfortable if I’d have needed multiple stents, stents on both sides, or if any were required high up. I’d decided that I would take a judgement call at the time based on the information they gave me. So if you also want to make decisions on the fly, it won’t hurt if you make sure that Dr Simka/Ludyga know what your preferences are BEFORE anything gets fitted.

I hadn’t really prepared myself mentally for the possibility that they might not actually fit a stent. In my mind I sort of viewed a stent as being the only ‘fix’ that stood between my current MS state and the chance of feeling a bit better. So when they said that I didn’t need a stent I felt a big sense of disappointment/despair. Fortunately, common sense kicked in after a day or so and I’m now very grateful to know that my own CCSVI problem is as much to do with neck position (I have short Jugulars) as it is to do with the stenosis they fixed by ballooning.

stevie wrote:I am yet to hear of anyone having the treatment for ppms. if there is anyone i would be pleased to hear from them

Hi Stevie, check out Wonky1’s thread here

He went a week or so before me and I think he has ppms.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Mutley » Thu Dec 31, 2009 8:23 am

It’s now day 14 for me.

I’ve not been so good these last few days as I seem to have picked up a bit of a cold. Usually things like a cold really really knock me for six so in some respects I’m encouraged that this one doesn’t seem to have knocked me anywhere near as hard as I’m used to. Maybe this is because the bug is quite mild, or maybe it’s a positive effect of the procedure. Who knows, but I’m not complaining.

In the days prior to my cold I was able to tackle a little DIY. There was a definite improvement in my ability to stand upright as I had enough energy to be on my feet for most of the afternoon and get some wiring sorted out. There’s no way I could have done this much a few weeks ago!

I’m still seeing some improvements to my foot drop and core stability issues too. I’m looking forward to the New Year now as once I manage to shake off this cold I hope to be able to start a small exercise programme to see if I can start to build up a little more strength.

So although there’s no massive improvement I am certainly very happy that things are heading in the right direction :D :D :D

So all that remains is for me to wish you all a very happy and healthy New Year. Let’s all hope that the new decade brings more good news on the CCSVI front.

Best Wishes to you all!
Last edited by Mutley on Thu Dec 31, 2009 1:03 pm, edited 1 time in total.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Vhoenecke » Thu Dec 31, 2009 9:35 am

Get well Mutely,

I too sent an e-mail to Poland and have not received a response. I was hoping it was because of the busy holiday season. I hope he has not been shut down.
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Postby Pepe » Thu Dec 31, 2009 9:57 am

Hi Mutley,

I am very happy for your improvements...All the best to you...Happy New Year...

Pepe.
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Postby Dave_NC » Thu Dec 31, 2009 10:13 am

Nice recap and story. I hope you are over your cold if not I hope its gone soon. They really knock the crap out of me.

Keep up the updates, it is great to hear how you are doing.
Learning and living everyday to the fullest. dx'd Oct. 2008. On the list for Liberation!
http://www.liberatedave.com http://mylifewms.blogspot.com
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Postby Mutley » Fri Jan 01, 2010 1:01 pm

I just had a few more questions come through via PM so I thought I'd post the answers here just in case it helps anyone else too.


1. Could you tell me if the airport over there can handle a scooter or a wheelchair?
2. if it can, is it easy getting off and on from the plane?
3. which one do you recommend, scooter or wheelchair?
4. are taxis easy to find to accommodate a scooter or wheelchair from the airport?
5. what is the average cost for taxi and in what currency?
6. do you think it would be wise to go alone?
7. the hotel you stayed is the best choice, for location, since it's not cheap?
8. how much polish money should I take?
9. is euro or dollar accepted easily?


1. There were no problems getting through the airport on my scooter, and there were plenty of well signposted disabled toilets to hand too. This was a big worry for me as I really suffer with my bladder, but the facilities were fine. Be prepared to take your scooter to pieces for inspection when you go through security coming home. Airport Security is done by the military out there....

2. Getting on/off the plane was easy. When you book your tickets the airline should have a facility where you can request 'disabled assistance'. This basically means that they arrange for a special vehicle to lift you on/off the plane rather than use steps, so you can stay in your scooter all the way to the aircraft door. They then put the scooter in with the luggage (make sure you keep the key with you - do not leave it in the scooter!!) They will usually reserve a seat for you right next to the aircraft doors and nearest the toilets. If walking even this short distance is tricky (door of plane to first row of seats) they even have a special mini wheelchair that can be used inside the aircraft to get you to your seat.

3. I think your choice of wheelchair or scooter comes down to the size of the scooter. Mine (a Pride Revo 3) is quite small and breaks down into smaller pieces, so it was quite easy to get into the back of taxis. Some taxis are larger ‘people carrier’ vehicles with larger luggage space anyhow so I’m sure you won’t have a problem. I’m sure I could have managed on my own, but it was certainly much easier to take a friend as he was the one carrying my luggage and getting the scooters in and out of the taxis. I didn’t have any problems using the scooter on the snow covered roads and pavements (sidewalks) as there always seemed to be a small army of people clearing the snow away everywhere.

4. As soon as you walk outside of the airport there is a row of waiting taxis. All of them were big enough to carry my scooter once it was broken down into smaller pieces. If you are really worried you could always email the hotel and ask them to send a taxi big enough to accommodate your scooter, to come and meet you at the airport. Once you get to the hotel, they will be happy to order taxis during your stay that can accommodate your scooter and take you to where you want to go. Most of the taxi drivers spoke good English and were happy to give out their mobile phone telephone numbers, so you could call them direct whenever you needed to go anywhere.

5. Currency in Poland is the Zloty, so I took enough of it to cover taxis and meals. Cost of taxi from airport to hotel was about 180 Zloty but the cost of the taxis at airports are always more expensive. Taxis are much cheaper when in Kattowice and costs from hotel to any of the 3 locations I had to go for tests and procedure were never more than around 40 Zloty. It takes around 30 minutes to get from the airport to Kattowice city centre by taxi.

6. It will be easier for you if you can take someone with you, but going on your own won’t be a problem so long as you can walk a few small steps and can cope with your scooter and luggage, and plan ahead. The cost of the flights was quite cheap and the difference in hotel rate between a room for one occupant or a twin was tiny. So it really didn’t cost that much to take my friend with me (I paid for him).

7. I wouldn’t have any problems recommending the hotel as it was perfect for what I needed. Although they don’t have any disabled rooms with twin beds. So you can either share a large bed with a friend in a room with disabled facilities, or have a non-disabled friendly room with twin beds. I went for the latter and didn’t have any major issues. There are probably cheaper hotels around but I didn’t have much time to do my research and come up with anything that was cheap, no stairs, good facilities, good location, food nearby etc. You might have more time to find something though. It’s much cheaper to book the hotel I stayed at (Qubus Hotel Prestige) over the Internet at sites like http://www.booking.com/ rather than directly at the hotel.

8. That depends on how long you go for, how many people, what you eat etc, but I’d take around 1200 Zloty with you plus Visa/Mastercard ATM cards so you can always take more out while you are there if needs be. You must pay in cash for the MRV if you have one, but the hotel and Euromedic will take credit cards.

9. Poland is not in the Euro but I’m told that some places will accept it. I doubt you’ll get very far with the Dollar. I’d take only Polish Zlotty if I were you.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Pepe » Fri Jan 01, 2010 1:28 pm

Hi Mutley,

Your report is excellent, as usual.

Last december, I have paid the Eco-doppler in Euros, the MRV in Slotys... The taxis and restaurants in Slotys ...but I did not know that it would be possible to pay the intervention to Euromedics by credit card. Are you sure? As you know we will be there in two weeks.

Pepe.
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Postby Mutley » Fri Jan 01, 2010 1:43 pm

Pepe wrote:Hi Mutley,

I did not know that it would be possible to pay the intervention to Euromedics by credit card. Are you sure? As you know we will be there in two weeks.
Pepe.


Hi Pepe,

I definitely paid for my procedure (ballooning only) on credit card. It cost 10,000 Zloty. One of the people I was with paid cash as he wasn't sure what the payment options were, but just in case you end up having your procedure done in a different building it would be a good idea to clarify payment details with Dr Simka before you go. I’d also take more than one card with you as initially the machine didn’t accept my Amex card, so I had to use my MasterCard.

Oh, and be sure to tell your credit card company that you will be using you card in Poland for the duration of your stay as otherwise they may think it is being used fraudulently if large transactions suddenly get presented in a different country.

I hope all goes well for you and look forward to hearing all about it. Where will you stay?

Mutley
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby sunlounger » Fri Jan 01, 2010 4:11 pm

Hi Mutley,

Thank you for providing these detailed posts you’ve really helped preparing for Poland.
I am flying on the 9th Jan hopeful treatment on the 12th :D
I’ve decided to stay at Qubus Hotel as it sounds perfect for me as a wheelchair user.
Armed with all this information I'm feel very convident about going on my own now 8)

Goodluck on the 18th Pepe
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Postby LouK » Mon Jan 04, 2010 2:24 pm

Mutley how are you doing now?
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Postby Pepe » Tue Jan 05, 2010 11:59 am

Hi Mutley,

Thanks for the information...We decided follow you, and we are going to stay at Qubus Hotel.

Hi Sunlonger,

So many thanks and good luck to you too, of course.

Best wishes,

Pepe.
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Postby Mutley » Sun Jan 10, 2010 1:24 pm

Hi everyone, sorry for the delay in my reply, it’s been a bit manic around here the last few days.

Unfortunately, I’m certainly not feeling as good as I did. I really do hope that this is just down to me seeing off a second cold in as many weeks, but there is part of me that is starting to worry that my ballooning fix is not as long-lasting as I’d like it to be. Time will tell I suppose.

On a positive note, I’m not taking my LDN anymore and feel no negative effects as a result of doing so. Its primary benefit to me was taking some of the urgency away when I needed to empty my bladder, and secondary was reducing the frequency of night time toilet trips from 6 or 7 a night to only 2 or 3. So right now, without LDN, urgency is no worse and night time toilet trips are between 1 and 2 only :D .

I’m certainly feeling a little more tired than usual, especially given that fatigue has never been a significant issue to me. The optimistic side of me puts this down to a) the fact the weather in the UK at the moment is hopeless, and b) that my body may now actually be trying to heal itself now that one of my jugulars isn’t so blocked and now that I’m sleeping in a position that’s not to the detriment of blood flow in my jugs.

Sometimes it’s quite hard to articulate the ways in which MS makes you feel rubbish, or indeed the ways in which things like ballooning make you feel better. But without going into detail I know that I’m certainly better than I was prior to my foray in Poland so I’m certainly not complaining :D .

I’ve sent Dr Simka an email to request that he sends me a summary to explain his observations related to my test following the Doppler and MRV, plus any observations during my procedure. I need his official diagnosis to add to the pictures I have of my MRV/procedure for when I meet with my GP next week with a view to securing ongoing support for my CCSVI in the UK.

I won’t be as active on TIMs in the coming days as my wife is due to have another baby by the end of the week, so sleepless nights, feeding, nappies and being covered in puke will probably be keeping me busy for a little while. Wish me luck, I reckon 2010 is definately going to be a great year for everyone :D :D :D

Best wishes to you all!
Last edited by Mutley on Sun Jan 10, 2010 2:12 pm, edited 2 times in total.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby JoyIsMyStrength » Sun Jan 10, 2010 2:07 pm

Mutley thanks for the updates. I'm glad you are doing better overall even though you may be a bit discouraged at the moment. I share your optimism that weather may be playing a factor and that your body is simply working hard to heal. I think once the new baby is in your arms, that sweet little miracle is sure to lift your spirits and help you forget these (hopefully temporary) setbacks. Don't forget to post pictures!

Take care and congratulations to you and your family,
Pam-Joy
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Postby whyRwehere » Sun Jan 10, 2010 2:28 pm

Oh, congratulations Mutley, that is so good to hear. Hopefully, for your wife, it will be an easy birth!
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