Mutley goes to Poland, and returns home liberated.

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

Mutley goes to Poland, and returns home liberated.

Postby Mutley » Thu Nov 26, 2009 9:43 am

As some of you may know I’m quite new to this site. I was drawn here by the wealth of information regards CCSVI so you don’t need me to tell you about how exciting the developments are in this field. Suffice to say that the possibility that there is finally something on the horizon that could make a major difference to people diagnosed with MS, their symptoms and long term outlook is absolutely epic.

Like many of you I’ve tried most things and not really had any perceivable benefits. I have little confidence in my Neurologist who thinks nothing of doubling doses of Betaseron (which put me hospital) or offering me other alternatives with such subtle side effects as death 8O I’ve even sat in his office on numerous occasions begging for further tests when I’ve felt like something was wrong with my blood circulation, only to be told that my perceptions are nothing more than various paroxysmal events related to MS. Sound familiar?

I can either wait an eternity for people like my Neurologist to come up with a viable treatment option for MS (yeah, right), or I can wait several years for the ripples of the CCSVI paradigm to reach the shores of the treatment frontline in this country. But the speed of my MS progression means that I don’t have time for either of these.

Thankfully, there now appears to be a third option. Perhaps I can head over to Poland and pursue testing and treatment options over there. For this to even be an option is something for which I owe a great deal of thanks to so many of you on this site. The trailblazers like Erika, whose story, persistence and courage are truly inspiring.

So armed with the information I have gleaned from here I sent Dr Simka an email on the 16th November to introduce myself and enquire of testing and treatment options. And to my amazement, I had a reply from the man himself!

So I am really pleased to report that I am booked for tests on the 15th and 16th December, and I’m really excited :D I’m not sure where in Poland, and I don’t know what time so I can’t book flights or accommodation yet. Hopefully that’ll become clear very soon. If the tests reveal any problems with my veins I’d like to get them fixed while I am out there, but I think that Dr Simka is already too busy in December :cry:

I plan to share all of the developments with you via this forum in the hope that it might help other people too.

So let the journey begin.......
Last edited by Mutley on Wed Jan 13, 2010 12:47 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 Rokkit » Thu Nov 26, 2009 10:10 am

Congrats, Mutley! I'm glad you are taking action for yourself.
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Postby ozarkcanoer » Thu Nov 26, 2009 10:13 am

More good news for CCSVI !!! Good luck Mutley and keep us posted.

ozark
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Postby Loobie » Thu Nov 26, 2009 10:32 am

Give 'em hell man. Great news to hear.
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Postby kinga » Thu Nov 26, 2009 10:56 am

Good for You Mutley!!!
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Postby Pepe » Thu Nov 26, 2009 11:27 am

Well done, Mutley... Of course, I will share the information with everyone in this forum... although not in your enviable English...BTW... I am learning a lot of English reading your posts... I am not joking... It is true.
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Postby ErikaSlovakia » Thu Nov 26, 2009 2:04 pm

Congrats, Mutley!
If you don´t do it, nobody will do it instead of you!
This is how I live and it works.
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
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Postby Mutley » Fri Nov 27, 2009 11:30 am

Thank you all for your warm wishes; I’m so glad to be in such good company :D

I went to go and see my GP yesterday to talk off the record. I want to know what the implications might be of having a procedure done abroad when it comes to requiring any follow up care in my Country. I was initially thinking about getting my blood checked regularly if I’m on blood thinning medication etc, but I guess that there is also the possibility of unforeseen complications too.

He said that there may be an issue. It seems that getting a procedure done abroad to correct a condition that hasn’t actually been identified/diagnosed/recognised here in the UK might be a problem if I want my GP to monitor my blood and correct any medication accordingly in connection with it. It seems that if he did this, he may technically be culpable if anything were to go wrong? :roll: He’s going to ask some questions of his colleagues and get back to me. But I do have the option of getting my blood checked privately (unfortunately, at my cost).

It still looks like my initial visit to Poland in a few weeks time will only entail Sonography and MRV. Whilst the impatient side of me would like to get my tests out of the way and then get immediate treatment for any issues uncovered, it might still be useful to return home armed only with the test results and see what the doctors over here are prepared to do or say by way of corrective treatment. Test data that revealed obvious stenosis would be a great way to wave the CCSVI flag right under their noses and beat them over the head with hard evidence. I don’t think for a second that they could offer me timely options that come anywhere close to the treatments being provided by Dr Simka and his colleagues, so I guess I’d end up heading back to Poland for any follow up treatment anyhow. Maybe that’s not a bad thing.

I don’t want to jump the gun or tempt fate though since step number one is getting tested. Who knows, I might not even have vein problems. In the light of what poor Radeck has been through, it’s a stark reminder to all that this sort of treatment (in that area of the body) is brand new and cutting edge. Our decisions/choices should not be taken lightly as treatment data is still quite fluid.

Hope I hear from Dr S soon regard times and locations. I’m worrying that my flight and accommodation options will become limited if I don’t book soon.
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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Mutley goes to Poland

Postby crocky » Mon Nov 30, 2009 4:21 am

Hi Mutley

i'm a newbie on here as well and your post totally mirrored my concerns! I have only just emailed Dr Simka and received a reply from him.
I am totally inspired by Ericka's story and am very keen to have this treatment - However - the aftercare issue is an important one - I'm not sure that the good old NHS will have a whole lot to do with any implications of an operation which has been carried out abroad, and private medicine in the uk is terrifyingly expensive!
Of course, I'm really interested in your story and how you go about solving these problems. I don't want to travel all the way to Poland, not to have the proceedure, if it is necessary - but concerned as to who picks up the pieces if I experience any problems on my return to uk.
By the way my name on here is Crocky - after one of my dogs, and your name - Mutley is the name of another one of my dogs!
All the best - Suzanne
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Postby ComfortablyNumb » Mon Nov 30, 2009 7:32 am

Hi Mutley,

Great that you've started the ball rolling. I am having the transcranial/extracranial venus doppler test this weekend. I will travel all the way to Poland, if I have to, if the scan shows a blockage in flow.
I would like Dr. Simka's e-mail as well, just in case, as I don't want to wait until the trials are done here in Canada.
Thanks and all the best
Keep us informed
Steve
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Postby ClaireParry » Mon Nov 30, 2009 7:48 am

Good for you Mutley,

I'm waiting anxiously for your news.

Last night the thought hit me.....

What if I don't have any blockages when I get to go?

Not worth worrying about I suppose.

Well done you. I'm not the tiniest bit jealous!!!!

Claire
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Postby Mutley » Mon Nov 30, 2009 10:33 am

Hi Suzanne, great minds and all that.... Mutley is the name of my dog too :D

Good luck with your tests Steve, Dr S’s email address is on here somewhere but PM me if you get stuck. Where are you having your tests done?

Claire, I know exactly what you mean. I’m trying so hard not to get my hopes up as if I don’t have blockages then I’ll probably be crushed. I’ll not worry too much though - it really won’t accomplish much. Deep down I feel like I have vein problems so it’s just a case of finding them.

Update. I heard back from Dr Simka and it looks like he’s happy enough to fit in around my proposed arrival time. What a star. So after landing on the 15th I’ll be heading straight to the hospital for my Doppler. He tells me that the address is in Katowice, Rolna street No 18 (EuroMedic), and he gave me a link to the hospital website too http://www.euromedic.com.pl/index.php?m=1

I’m still not sure where I’ll have the MRV on the 16th but will report back when I find out.

So I’ve booked the flights now and just need to find wheelchair-friendly accommodation that’s close'ish to the hospital and a convenient watering hole :wink:

I’ve been thinking a little more about my treatment options. As you know, it’s unlikely that I’ll have anything corrected on this visit and I’ll just be heading home armed with test results that hopefully confirm CCSVI. So given that my treatment options over here are currently limited (and very likely to remain so for the foreseeable future) I think I will ask my GP if he’d be willing to start the ball rolling with an E112 reciprocal healthcare application and a recommendation that I be treated abroad since any treatment is unavailable here. But I think that I may have to confirm 1) that this treatment is currently available under Poland’s state health scheme, 2) that Dr Simka would cooperate, 3) what, if anything, I’d have to pay towards the treatment.

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

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
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Postby ClaireParry » Mon Nov 30, 2009 10:58 am

That's great news.

You could never hope for that kind of service here could you?

I'm so looking forward to hearing about it Mark. Hope it all goes smoothly.
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Postby ClaireParry » Mon Nov 30, 2009 11:00 am

It was an ironic jealous comment!! I'm very much hoping to get there myself soon. I'm just looking into costs of flights etc.....
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Postby Pepe » Mon Nov 30, 2009 11:59 am

Mutley,

Edser talked about E112 application two or three weeks ago...As you know he is just now -today is Monday, Nov. 30th- in Katowice. Maybe in some days he would be able to inform you about what he did about it.
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