Mutley goes to Poland, and returns home liberated.

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

Postby crocky » Mon Dec 21, 2009 10:16 am

Hi Mutley
So happy for you that everything has gone well so far. Thanks so much for updating us all on here - I've been looking out for you - and look forward to seeing your future posts.
All the very best - love Suzanne
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Postby sunlounger » Mon Dec 21, 2009 1:51 pm

Mutley wrote: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.

:D wow this is a major change for the better :D

thanks for posting such a detailed account its been extremely helpful

hope you have more improvements soon
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Postby Katie41 » Mon Dec 21, 2009 1:56 pm

Fantastic! So glad for you!

Thanks for such a detailed account. Every little bit of info, no matter how small, helps us all. Thanks for taking the time.
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Postby Mutley » Mon Dec 21, 2009 2:50 pm

LR1234 wrote:When they do the procedure do they check high up in the jugular veins?

Also do they check the VV veins in the procedure?


Hi LR,

To be honest, I'm not sure whether they check particularly high up. They have given me a CD that shows the blood flow as it was during the procedure both pre and post balloon, and none of the clips on it show anything higher than my jaw line. That doesn't necessarily mean that they don't check there though. One thing that may explain the apparent difference in findings between Dr Dake and Dr Simka is that so far, Dr Simka has only liberated between 10 and 20 patients.

I'm not sure about the other question either I'm afraid as I don't know what VV veins are?
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 xia » Tue Dec 22, 2009 6:23 am

Hi!
Thanks for the informative report and I hope you are doing well. :D
Did you decide to just go for the balloon rather than the stent or was it recommended by Simka?
I am off to see a neurologist tomorrow and if she gives the go ahead then a vascular surgeon (I have already spoken to) is prepared to start the tests.
I'm not holding my breath but lets see what happens :D
Take care
xia
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Postby LouK » Tue Dec 22, 2009 7:54 am

Hi Mutley,

New to the This is MS forum, your thread made me want to post. Congratulations on going out to Poland for the treatment. I'm just wondering what you actually had to pay for? Obviously your flights and accomodation etc. but did you have to pay for any of the treatment at all?

Louise
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Postby ClaireParry » Tue Dec 22, 2009 9:42 am

I'm really happy for you Mutley and look forward to your updates as they come.

The hot showers/baths thing seems to be a commonality between stentee(s) if there is a word!!

I'm off to Poland on 9th Feb for just the Diagnostics. I'm over the moon.
Had the date confirmed by Dr Simka today.

Look forward to hearing more from you soon

Congrats to you xx
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Postby Mutley » Tue Dec 22, 2009 10:33 am

Thanks Claire, best of luck when you head over in Feb. Hope it’s not too cold! X

Thanks Suzanne. Best of luck to you too when you head over in April. x
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 » Tue Dec 22, 2009 10:38 am

xia wrote:Did you decide to just go for the balloon rather than the stent or was it recommended by Simka?


Hi xia,

There wasn’t any consultation during the procedure to ask if I wanted a stent or not since they decided that my narrowing didn’t warrant one. They just ballooned it and told me what they’d done afterwards, along with their observations about the blood flow while my neck was turned.

Good luck visiting your Neuro, looking forward to hearing all about it.


LouK wrote:I'm just wondering what you actually had to pay for


Hi Lou,

Welcome to the site!

Yes, I ended up paying for the lot. I was going to try and do it via an E112 but step number one is getting a Consultant to agree that you need the procedure and there was zero chance of getting my Neuro to play ball. I will try and see if there is any chance of claiming retrospectively but I won’t hold my breath.

The MRV was about £100, and the procedure worked out at about £2200 which also seemed to include the initial Doppler. I think it would have been about an extra £1000 had I received a stent. The hotel and breakfast for two people over 5 nights came out at about £400. Flights for two were about £200 but would be cheaper if I’d have booked in advance. I reckon I did about £170 on taxi’s and maybe about the same again on food and drinks. Prescription for meds was about £20.00 after I flashed my E111 card.

Hope this helps.
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 LouK » Tue Dec 22, 2009 3:04 pm

What meds do you have to have now and what follow up consultations or treatments do you need? Will they be able to monitor you in the UK?

As you've just had the ballooning procedure, theres the risk I guess that the veins could narrow again, presumably if your MS remains stable now and then starts to progress again, would you get the veins checked again and would you be able to get that done in the UK now there has been shown to be a problem?
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Postby Pepe » Wed Dec 23, 2009 2:29 am

Congrats Mutley,

I have been waiting your report the whole week... I am very happy for you... All the best to you...As I told you before our thoughts, our worries, our ideas... were always reflected in your messages...

Your detailed report will be very useful for us... as my wife will do the procedure on January, 18th.

Please, keep us reporting...

I would like to ask you some questions:

1.- What kind of test they are doing before the procedure?

2.- What specific medicaments have you to take after the procedure?

3.- Have we got to take to Poland anything apart from the pyjama :) ?

4.- Dr. Simka told me that one familiar could be in Hospital with the patient...but I do not know if they will allow me to spend the whole nigth in her room... do you know if this would be possible? I am a little worried about this because my wife does not speak English at all?

5.- During the procedure... have the surgeon talked to you... asking for doing something? I am thinking about asking them to allow me staying at the operating surgery room in order to translate to her their instructions.

6.- Any suggestion?

Thanks in advance for your answers.

Mutley, Erika, Edser, Wonky, Rici and the rest of the Poland Club (forgive me for not remembering all the names...): I do not know when... I do not know where... but some day I (we, why not?) will have to meet in person... because I do really know why: because I want to give you a very big hug full of love. Of course, I am thinking about the not european friends... What can I say to all of them? I do not know...I should know more English to express the good feelings I have...

Pepe.
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Postby Mutley » Wed Dec 23, 2009 4:17 am

LouK wrote:What meds do you have to have now and what follow up consultations or treatments do you need? Will they be able to monitor you in the UK?

As you've just had the ballooning procedure, theres the risk I guess that the veins could narrow again, presumably if your MS remains stable now and then starts to progress again, would you get the veins checked again and would you be able to get that done in the UK now there has been shown to be a problem?


Just the daily anticoagulant injection called Fraxiparine. They gave me 7 days worth. I think some types of anticoagulant drugs require careful monitoring of your blood to make sure it doesn’t become too thin, and they adjust it accordingly. Before I went, my GP said that he’d be happy to monitor all of this if it was required, but since my meds are for such a short duration this won’t be necessary. Likewise, because I didn’t have a stent fitted there is no follow up required.

Your right about the possibility that my veins may re-stenose. Dr Ludyga told me that I should keep an eye on my MS symptoms as this may well provide clues of any problems reoccurring. If this happens I will try and pursue testing here since I now have irrefutable proof of a previous problem. In the meantime, I intend to take my test evidence to as many people as possible in an attempt to galvanise support in the future.
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 » Wed Dec 23, 2009 4:25 am

Pepe wrote:1.- What kind of test they are doing before the procedure?
2.- What specific medicaments have you to take after the procedure?
3.- Have we got to take to Poland anything apart from the pyjama :) ?
4.- Dr. Simka told me that one familiar could be in Hospital with the patient...but I do not know if they will allow me to spend the whole nigth in her room... do you know if this would be possible? I am a little worried about this because my wife does not speak English at all?
5.- During the procedure... have the surgeon talked to you... asking for doing something? I am thinking about asking them to allow me staying at the operating surgery room in order to translate to her their instructions.
6.- Any suggestion?


Thanks Pepe, and the best of luck for January 18th. It would be nice to organise a get together so that we can all meet each other. Maybe we could go over to America and meet some of the American pioneers at the same time. I think an international group hug is a great idea.

I’ll try and answer your questions as best I can.

1) I had the Doppler on my neck on the Tuesday and the MRV on the Wednesday. On the morning of the procedure (Thursday) they took some blood to run a few tests (not sure what) and some people also went for eye tests too, which were done by Dr Ludyga’s wife I think. Because of the blood test I was not allowed breakfast on Thursday morning.
2) I was just given a 7 day course of a daily anticoagulant injection called Fraxiparine. But I think that what your wife will be given will depend on what they do during the procedure.
3) I would take a Polish phrasebook, some Polish currency to cover the costs of taxis, MRV’s and food etc. It costs something like 180 Polish Zloty to get from Katowice airport to Katowice City Centre. Airport taxis aren’t cheap. I’d also take the time to translate some phrases into polish to give to the taxi drivers (just in case) that says things like ‘Please take me to EuroMedic - Rolna Street No 18, Kattowice’ etc. Oh, and take some warm clothes plus hats/gloves.
4) There is one room for the Male patients and one room for the Female patients, so your wife will be in a room with other Female patients. There are no beds spare for family members so they must wait on some settee chairs in the corridor. What language does your wife speak? Between them, the doctors seemed to be able to speak English/German/Italian/French.
5) The surgeons did explain what they were doing during the procedure, and they did ask me to move my neck about a bit. Ask Dr Simka if anyone there can speak your wifes language maybe?
6) If you live in Europe, see if you can get an E111 card as this will allow you to get your meds cheaper when in Poland.

Feel free to ask any more questions, I know you must be worried.

Best wishes!
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 willm » Wed Dec 23, 2009 5:02 am

Congratulations Mutley and many thanks for the fantastic information you are providing here.

I am a UK PPMS sufferer hoping for a May appointment with Dr Simka and have been following your posts avidly to try and get some idea of what's involved.

Apologies if this is a stupid question, but how are the post op injections administered - do we have to inject ourselves or do we go back to the hospital for them and then find a nurse when we get back home?

Thanks again

Will
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Postby Mutley » Wed Dec 23, 2009 5:19 am

willm wrote:Apologies if this is a stupid question, but how are the post op injections administered - do we have to inject ourselves or do we go back to the hospital for them and then find a nurse when we get back home?Will


Hi Will,

It’s a subcutaneous injection that is administered yourself. You just inject into an area of fleshy/fatty skin like your belly for instance. It’s the same sort of thing you’d have done if you’ve been on any of the Interferon or Copaxone therapies.

Hope that you manage to get your appointment in May OK. Fingers crossed for 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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