Mutley goes to Poland, and returns home liberated.

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

Postby ErikaSlovakia » Mon Nov 30, 2009 11:29 am

Mutley wrote:Does anyone know much about E112 applications? Anyone considering this in connection with CCSVI?

Mark.

My country is also member of EU so we use the same E 112.
1. A specialist - angiologist must fill 5 pages of application for the health insurance company.
2. The local health insurance company must agree with it and
3. They send it to the head office of the health insurance company in my country
4. The head office must agree as well and they send you the E112 form.
5. You must take the form with you to Poland before the procedure.

It works like this in my country. In my case, no local specialist was able to do it so step number 1 was not successful and I had to pay for my procedure.
My insurance company was not able to tell me any name of any doctor.
They were telling me all the time it was possible to do the procedure in Slovakia but they of course did not tell me where.

Good luck!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Advertisement

Postby Mutley » Mon Nov 30, 2009 12:13 pm

Thanks Erika, as always your posts are really helpful. I wonder how long it would take to complete steps 1-5? No doubt it'll be different every time and very Country dependant.

Pepe wrote:Mutley,

Edser talked about E112 application two or three weeks ago....

Thanks Pepe, I was sure I'd seen someone post that they were pursuing an E112 but couldn't remember where I'd seen it. Thanks again!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

I'm a newbie too but am very interested...

Postby bindsanator » Mon Nov 30, 2009 2:58 pm

Hello all

I first heard about this treatment a few weeks ago from family and frinds (Canadians) and I have not seen anything with this much potential yet!

I am starting with an adult stem cell treatment but I doubt it will be the end of my MS. So I am very keen to get moving on this other front - I am looking to get the tests done before I receive my stem cell treatment in the next month or two. I want to see if I do have these blockages and, if I do, if stem cells have any effect on it. It would be good to know.

While currently living in the UK, I will be moving back to Canada in the spring and Toronto, where I am from, is very near the university which is conducting the tests on the CCSVI front, so I will do my best to get in.

What tests do I need to have done and can they be done privately in the UK? I know ultrasound, but what exactly are the specifics?

Thanks a bunch and best of luck to those going for it! I will be waiting to hear.

Cheers
Lindsay
User avatar
bindsanator
Newbie
 
Posts: 3
Joined: Mon Nov 23, 2009 3:00 pm
Location: Toronto, Ontario

Postby ErikaSlovakia » Tue Dec 01, 2009 12:35 am

Mutley wrote:Thanks Erika, as always your posts are really helpful. I wonder how long it would take to complete steps 1-5? No doubt it'll be different every time and very Country dependant.

Yes, I was working on it for three monts - but nothing. I was only the first in Slovakia so I strongly hope Slovak patients after me will have it easier.
The head office told me, if it was really urgent and everything works fine it takes two weeks.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby xia » Tue Dec 01, 2009 12:59 pm

Hi Mutley,
Really pleased to read that you are heading off to Poland and I hope all goes well!
I too am from the UK, I dont understand why they are so hostile towards the idea of CCSVI for MS?
Anyway planning to get to Poland myself in early 2010, is it easy to organize?
Off to see GP first to see if he can help in any way...
Really hope things keep improving for you!
xia
User avatar
xia
Family Member
 
Posts: 38
Joined: Mon Nov 30, 2009 3:00 pm

Postby Mutley » Thu Dec 03, 2009 3:43 pm

Good news people :D :D Dr Simka emailed me tonight and confirmed where I have to go for my MRV on the 16th. The address he gave me is: Zabrze, 3 Maja str. No 15. Department of Magnetic resonance.

So it’s now confirmed that I will have the Doppler on the 15th, and MRV on the 16th. If I am really really lucky (and assuming that the tests highlight a problem) he may be able to perform an operation on me with Dr Ludyga while I am out there. That would be brilliant!!

I have booked a cheap flight out with Ryanair on the 15th, and a return flight with Wizzair to London Luton.

I wasn’t really sure which hotel to stay at because I needed somewhere without stairs (I’m in a wheelchair) and the hotel recommendation I saw in the Poland section of this forum talked about lots of stairs. So I’ve booked myself into the Qubus Hotel. It’s not the cheapest hotel in Katowice but still seems quite reasonable. I look forward to telling you all about it.

xia wrote:Anyway planning to get to Poland myself in early 2010, is it easy to organize?


Hi xia, yeah it’s been really easy to organise so far. A few emails, a bit of clicky clicky on the Internet and it’s all booked. Best of luck for when you go and see your GP, so let us know how you get on.

bindsanator wrote:What tests do I need to have done and can they be done privately in the UK?


Hi Lindsay, I’m going for the two tests listed above. Whilst I’m sure they can be done privately in the UK I’m not so sure they would be done correctly. As you may have already read on here, there are specific protocols for how the tests need to be conducted in order to be accurate and IMHO it’ll be a while before people get up to speed with it here. Many people have had several negative tests before going to see someone who actually knew what they were doing. I just decided to go and see the experts from the off. Really hope you get what you need.

Mark.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby jewelia » Thu Dec 03, 2009 5:39 pm

Hi Steve from Ontario!

I also live in Ontario, Canada, and was wondering where you will be getting your testing done. I have been a a loss as to where to go and would really appreciate knowing if there is somewhere in Ontario that does the testing.

I just spoke to a woman named Yasmeen Sayeed, who is the president/CEO of a company called Surgical Tourism Canada. She has been trying to find clinics that will do the appropriate testing for CCSVI in Canada. She is asking those who are interested to call her at 1877 871 4315. You can check out her website too at www.surgicaltourism.ca
I am just learning day by day about this too. I'm sure that other countries (India) will soon be offering the surgery soon through this company.

Good luck with you tests!
Julia
User avatar
jewelia
Getting to Know You...
 
Posts: 23
Joined: Sat Nov 21, 2009 3:00 pm

Postby ErikaSlovakia » Thu Dec 03, 2009 11:46 pm

Mutley wrote: I have to go for my MRV on the 16th. The address he gave me is: Zabrze, 3 Maja str. No 15. Department of Magnetic resonance.

I wasn’t really sure which hotel to stay at because I needed somewhere without stairs (I’m in a wheelchair) and the hotel recommendation I saw in the Poland section of this forum talked about lots of stairs.


Congrats!!! :D :D :D
The address is the same as where I went for MRV. I just took Taxi from Katowice. I payed 80 Zloty. It was about 20 minutes. Oh sorry, 80 Zloty is about 20 Euro.

Good you talk about the Hotel Franz Josef at Mikolowska 44. Yes it really has 27 stairs. I was counting them last time. So people, if you have a problem with 27 stairs do not go there. It is only 1-2 minutes from the hospital, but just use other hotel. It is easy with a Taxi. I do not think it is very expensive. And if I say that with my little "eastern country" disabled pension, you can be sure it is not expensive.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby Mutley » Mon Dec 21, 2009 8:20 am

Whooohoo! I’m pleased to tell you all that I’m back from Poland, and I’m liberated!

Boy it’s cold this time of year out there, a mere -14 yesterday. Anyway, there’s a load to tell you so here goes:

I arrived last Tuesday 15th and headed straight over to the EuroMedic facility at Rolna Street No 18 for the doppler where I met Dr Simka for the first time. He scanned both sides of my neck whilst upright, and then whilst lying down. He said that both sides appeared to be severely concluded; in fact he described my jugulars as being ‘collapsed’. I was delighted that he’d found a problem and even more so when he confirmed that he had indeed managed to squeeze me in for a procedure on Thursday 17th.

Then it was back to the hotel. I’m pleased to report that it was a great base for the stay and there were no issues with stairs or anything else that can be an issue if you need to use a wheelchair. Personally, I tend to use a mobility scooter and I certainly didn’t have any problems using it. The hotel receptionists (whom all spoke good English) did a great job of organising taxis for me and making sure that they were big enough to accommodate my chariot. The hotel had a small shopping mall next to it which helped extend my dining options considerably.

On Wednesday it was a trip to Zabrze, 3 Maja street No 15 for the MRV. Beware that the main road between Kattowice and here is currently affected by some roadworks due to the construction of a new carriageway, so this can add an extra 45 minutes to the trip. It’s basically a small private facility here inside a much larger public hospital that is about 100 years old. There is a sort of gate you can use to gain access from the main road, but if you have the hospital on your left side (when on the road) you can take the next road on the left where there is a barrier on the Left after about 50 yards that will allow you to drive round the back (where a friendly taxi driver can get you really close to where you need to aim for). Finding the right department was a bit of a nightmare and I’d recommend taking the time to print out a small piece of paper translated to Polish that says something like ‘please show me the way to the department of magnetic resonance’. After presenting myself at the main desk I was asked to complete the usual MRI forms (have you got any metal inside your body, are you claustrophobic etc). Although the form was written in Polish, there was somebody on hand to translate. Surprisingly, they asked for payment up front here and it had to be in cash. Then it was into the MRI machine (earplugs are highly recommended since this was the loudest scanner I’ve ever been in). At the end of the procedure there was a chance to speak to the doctor about my results, which seemed to show that there was a definite blockage in my right Jugular. The pictures also showed a large amount of collateral blood flow pathways that looked like a handful of hanging spaghetti. Nice.

On Thursday (procedure day), I was told to go to Bartosza Glowackiego 10, for 07:00. The entrance to this facility was via a courtyard area towards the bottom of the road where there were parked cars and ambulances. Then you walk down the corridor and through some doors that have the ‘EuroMedic’ logo on them. Annoyingly, it wasn’t until about 08:30 that anyone turned up but since there were other people there for the procedure too there were other people to keep me company. In fact, I really enjoyed their company over the next day or so and I’m going to miss them! Then there were blood tests and more forms.

Then I was shown to my bed and I made myself comfortable for a few hours until the proposed surgery start time of 16:00.

I’d already been briefed to expect this next bit, but just in case you are also about to have a procedure done you should know two things. 1) You need to make sure that your err, ‘groin’ area is nicely shaved. They will offer to do it for you with a laughably hopeless disposable razor and no soap or you can take care of it yourself using whatever you may choose to use instead. 2) You may also be catheterized ready for the op. As you may already know, this is a potential cause of a UTI so I’d recommend you take lots of cranberry juice etc with you just in case.

And then after what seemed a lifetime, it was my turn to be wheeled in to the operating room. You get a sedative via the air that’s pumped just under your nostrils and this did an amazing job of taking all of my nerves away, as by 20:30 I’d become just a bit anxious. And then it’s a quick local anaesthetic and off we go....I have to say that I didn’t feel a thing and the whole thing was over in a flash.

The op itself was performed by Dr Ludyga and someone else that I never got to meet so he will remain nameless. They initially tried to investigate my left jugular via my groin but couldn’t quite get to it due to obstructions caused by my neck muscles etc. So they ended up investigating this area by going in through my neck. They concluded that there wasn’t really much of a problem on this side but it did highlight an unexpected issue. In order to go in via my neck on the LHS I had to turn my head so that it rested on my right ear and thereby expose my neck. But doing this actually caused my jugular to stretch and twist sufficiently to actually block blood flow. The consensus here was that my jugulars are actually too short! This is quite interesting because although I’ve read about blocked/narrowed veins and even people who are missing their jugulars, this is the first time I’ve heard of problems being caused because they are too short.

Further investigation confirmed the narrowing in my right jugular, which was duly fixed with a balloon.

So it now appears that my vein issues may have as much to do with my posture (especially the position I sleep in) as they do with having any blockages. So I’m now actively trying to sleep without having my head twisted in any way. Much harder than it sounds!

At this point I should tell you that when I spoke to Dr Simka on Tuesday he indicated that I would need to hang around for 3-4 days after the procedure and I mistakenly thought that this meant I’d be staying in this clinic/facility for the duration. Not so, as we all left the following day and it was back to the hotel.

I have been prescribed a daily anticoagulant injection called Fraxiparine for 7 days only. It would be longer if I’d have received a stent or two.

They have provided me with CD’s of the MRV and of the procedure itself so I’m looking forward to sharing this data with the doctors over here. This is hard evidence of vein problems that cannot be refuted.

So are there any benefits now that I have had a procedure done? I think I must be realistic here and say that since I’m SPMS with a high EDSS this may not actually do much for me. If all it does it stop me progressing then I’ll be thrilled. I’ve also been told that it may be quite some time before any perceivable benefits show themselves. Having said that, it’s now day 4 and already there is a massive difference in my skin colour – especially my face. I’m usually quite pale but everyone has commented about how well I look. Now I look like I’ve just spent a week in the sun! My legs aren’t as grey either. I have also noticed that my hands and feet are much warmer than usual too. Because my groin area had quite a lot of dried blood and remnants of iodine etc, I had a bath last night. Not just my usual tepid vaguely warm bath, but a hot steaming bath, with no ill effects whatsoever. Usually a hot bath would melt me to the inside of it and I’d be stuck there for an hour after the water had drained out before I could summon the strength to crawl out. But last night I hopped out just as easily as I got in.

As I say, it’s still early days but I am VERY VERY happy!!
Last edited by Mutley on Mon Dec 21, 2009 11:29 am, edited 5 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
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby ErikaSlovakia » Mon Dec 21, 2009 8:37 am

Thank you for sharing you story with us.
I wish you the best :D :D :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby wonky1 » Mon Dec 21, 2009 8:42 am

Mutley, I'm really happy for you. Funny how you take the little things like a hot bath for granted until there gone. Nice isn't it.
Beware of uncontrollable grinning in the days to come.
:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
User avatar
wonky1
Family Elder
 
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm

Postby ozarkcanoer » Mon Dec 21, 2009 8:46 am

Mutley, I am so glad things are working out for you !! It is interesting that you met other people who were getting the procedure on the same day !! I wonder how many procedures Dr Simka and Dr Ludyga can do in one day ?

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby Mutley » Mon Dec 21, 2009 8:47 am

wonky1 wrote:Mutley, I'm really happy for you. Funny how you take the little things like a hot bath for granted until there gone. Nice isn't it.
Beware of uncontrollable grinning in the days to come.
:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D


Thanks Wonky, I see what you mean about the grinning!!

Oh, and you were SOOOOO right about Joanna too!!!

I said hi to everyone for you and Michael returns the greetings. He was telling me that you are a really nice chap, and then came at me with a razor and offered to shave me lol :D
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby Mutley » Mon Dec 21, 2009 8:52 am

ozarkcanoer wrote:Mutley, I am so glad things are working out for you !! It is interesting that you met other people who were getting the procedure on the same day !! I wonder how many procedures Dr Simka and Dr Ludyga can do in one day ?

ozarkcanoer

Hi Ozarkcanoer,

Thanks.

I think they aim for 4 in a day (well evening really) and I think they did two clinics during the week I was there totalling 8 patients all up. They must be getting busy....
Last edited by Mutley on Tue Dec 22, 2009 1:04 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
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby LR1234 » Mon Dec 21, 2009 9:16 am

Thanks for letting us know everything in such detail. Its great to know exactly what to expect:)

I have been trying to train myself to sleep on my back as I am aware I am very contorted in the morning laying on my stomach. I also wonder if I have jugulars that block when I turn my neck.

I am glad to hear of some of your improvements and I hope they continue.

When they do the procedure do they check high up in the jugular veins?

Its weird that Dr Dake finds issues high up in the jugulars and Dr Simka is finding issues lower in the jugulars.

Also do they check the VV veins in the procedure?
LR1234
Family Elder
 
Posts: 1507
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service