Another guinea pig heads off to Poland! Skincoll this time!

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

Another guinea pig heads off to Poland! Skincoll this time!

Postby skincoll » Tue Jun 01, 2010 2:22 am

Hi everyone!

So it's my turn to get involved, and I'm in Katowice with the Simka team w/b 7th June (next week - yikes!), and looking forward to meeting mtf and Johnson out there.

I'm determined to do my best to document everything that happens, to add to this record of anecdotes we're building on CCSVI.

So, I may as well kick this thread off with a quick rundown of the story so far...

I am a 30 year old guy (called James) from London and I was diagnosed with RRMS in 2008. My symptoms remained undiagnosed since what I now consider to be the first exacerbation (major visual and speech difficulties) in 2001. So I did nothing for 7 years to help myself. In fact I had a terrible diet, didn't exercise, smoked, drunk a lot (and worse) during this time. Then in 2008 when the pins and needles/numbness had spread to both hands and both feet, I thought I better see someone about it.

Thankfully, nowadays though I don't feel too bad, and I have taken the decision after much research, never to take pharmaceuticals for this, instead opting for the natural/alternative route (diet, supplements, amalgam removal, homeopathic detox, IBT, daily meditation etc.) And I think these have worked well, although of course I'll never know what I would have been like otherwise. But in many ways my life has been changed for the better by what has happened, in terms of health consciousness and spirituality.

My current list of symptoms includes pins and needles/numbness in my hands and feet (and impaired manual dexterity), random pins and needles/numbness in other places, brain fog, fatigue, foot drop (just the occasional scuffing of shoes really), stiffness and aches, minor balance and coordination problems and probably a few more things that I can't remember right now. All these symptoms are quite mild however, I don't really feel they affect my life too badly, and many of them seem to be better some days and worse on others. I don't feel I have 'attacks' any more - things just seem to fizzle away at me!

So that's where I am now, and I'm hoping this procedure (providing they can do it) will help things and maybe stop it progressing.

I have thought about whether it's worth taking the risk of getting this done while things are not exactly terrible for me (would be a nightmare if it made it worse!), but I have decided that since the best improvements seem to be for those with the least progression, I should go for it while I have the opportunity.

Anyway, my love and best wishes to you all.

Will let you know hat happens.

James.
Last edited by skincoll on Wed Jun 02, 2010 1:28 pm, edited 2 times in total.
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Postby mtf » Tue Jun 01, 2010 4:06 am

Hi James,

I can´t wait to go...Anyway, I'll be in Katowice on Sunday night with my mother. I'm in a wheelchair and hope everything will be ok to us!
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Postby skincoll » Tue Jun 01, 2010 11:38 am

I'll be there Monday. See you then!
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Postby sumsum » Tue Jun 01, 2010 11:14 pm

Good luck to you both! Please, get back to us with your experiences once you are back.

:D
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Postby Cece » Wed Jun 02, 2010 9:02 am

Wishing you both the best!!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby bossman » Wed Jun 02, 2010 9:13 am

May God continue to Bless you all.
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Postby esta » Wed Jun 02, 2010 9:29 am

best of luck to you all...its so worth it - even restenosing, because you've seen how wonderful you can feel.
if anyone can ask them about the high % of restenosing, if stenting all or most wouldn't be a better choice. and, if not why not...yes, the risk is higher, but so is re-doing hard on the body, i would think...
esta
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Postby Zeureka » Wed Jun 02, 2010 4:11 pm

You'll not regret you took your opportunity ! You're in excellent hands there!

By the way, apart from the excellent service the sunny Euromedic staff and open-minded/informative doctors are providing - the breakfast at the Qubus is excellent, Krakow is nice to visit after the BIG EVENT and the Italian Restaurant in the Gallery next to Qubus first floor is lovely :wink:

Wish you all the best! In bocca al lupo (= good luck!)
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Postby skincoll » Fri Jun 04, 2010 1:40 am

Thank you for your messages of support.

I'll be in touch...
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Postby skincoll » Mon Jun 07, 2010 7:55 am

We got to Krakov very easily on Easyjet! Kris (top bloke!)was at the airport ready to take us to Katovice in a nice silver Mercedes people carrier! The journey was only 40mins on a motorway.

The hotel is decent enough and we're on the 22nd floor, so we have a good view over the city. I went up to introduce myself to Marta (the Euromedic 'office' - a hotel room really - is on the top floor of the hotel). We had a look round the centre of Katowice this afternoon. It's not bad - plenty of places to east and drink etc.

Hopefully going to see Johnson and mtf tonight at some point tonight. I think they may be one day ahead of me so I'll be asking how their tests went.

I have the eye test and MRV tomorrow. Meeting Kris downstairs at 9am.

My god, what a boring post! That's all there is to say at the moment - I guess the fun will start tomorrow!

Peace.
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Postby Zeureka » Mon Jun 07, 2010 9:08 am

skincoll wrote:We got to Krakov very easily on Easyjet! Kris (top bloke!)was at the airport ready to take us to Katovice in a nice silver Mercedes people carrier! The journey was only 40mins on a motorway.

The hotel is decent enough and we're on the 22nd floor, so we have a good view over the city. I went up to introduce myself to Marta (the Euromedic 'office' - a hotel room really - is on the top floor of the hotel). We had a look round the centre of Katowice this afternoon. It's not bad - plenty of places to east and drink etc.

Hopefully going to see Johnson and mtf tonight at some point tonight. I think they may be one day ahead of me so I'll be asking how their tests went.

I have the eye test and MRV tomorrow. Meeting Kris downstairs at 9am.

My god, what a boring post! That's all there is to say at the moment - I guess the fun will start tomorrow!

Peace.
Not boring at all, because the next days the exciting part will happen :D ! And when you report, it's like a nostalgic shiver bringing me back there again...and all the nice people I met coming back to my mind...

I was on floor 21, not a bad view from there, isn't it? Even if Johnson arrived 1 day earlier you might still be in same group, otherwise there will certainly be other wonderful people! Usually they split you in 2 groups, but those of the eye test appointment with Chris to bring you tomorrow morning (4-5 people) will most likely be the ones with whom you will have procedure same day in the hospital.

I wish you all the best and you'll be astonished tomorrow to see in your group that that nerve damage in the eye test can still be seen in those that (even if longer time ago) had optic neuritis, even if eye sight now overall seems relatively OK... the MRV building you'll see...a little bit older...but the MRV machine itself modern. Euromedic told me will invest in a own MRV machine soon so they do not need to drive people there over the motorway with coal mines any longer...

At my MRV (was first one of my group that went in) Piotr had forgotten to inform me that the MRV analyst - at the end while you're still in the tube and think it's now over will talk to you. And say your name: "James - now listen: breathe in, breathe out and PUSSSHHHH !"

I was very startled to suddenly hear a voice like this talking to me as in the several MRIs I had during my life never ever someone talked to me "from above" in the MRI tube :lol: :lol: :lol: Also in the first very moment I did not know what they meant precisely with pushhhh, but then fortunately within seconds of a bit startled reflection got the point that they meant to keep the pressure down on chest... I think it's that they check the blood flow in the azygous in that moment.

I wish really all of you this week ALL THE BEST !!! And am sure you'll have a wonderful group going through all these exciting moments! And sure you'll have a nice dinner !
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Postby skincoll » Tue Jun 08, 2010 8:53 am

Thanks for the message Zeureka!

Day 2:

Had the eye test this morning and I have "nothing to worry about", so they said. All 'green', and no problems with nerve damage. So all that double/blurry vision may not have been optic neuritis. I feel very lucky, as some of the other patients had loads of 'red' areas on their scan printouts.

Then the MRV this afternoon. Well the MRI machine seems even louder in Poland! And made by General Electric. Boo! But it gives out some pretty cool synth noises that I amused myself by beatboxing along to! I reckon I'd quite like to sample some MRI noises and record an industrial techno record! And of course I slammed the CD-rom they gave me straight into my laptop to study the images when I got back to the hotel, and guess what I found... I found I don't have a bloody clue how to diagnose CCSVI! So I'm going to leave it to the docs tomorrow.

And it's really hot here in Katowice. 35 on Friday, some are saying.

The other patients have been great; some really, really nice people from all over, and great to exchange information with. I was having conversations in the queue for the MRV today and some are wary of stenting, worried about restenosis etc. (this is after all still an experiment)... totally different from all the guys I met in the bar last night who were all 'fired up' to go for anything the doctors said. In fact I'm sending those guys (including mtf and Johnson) positive vibes as I type as they'll be under the knife around now.

Can I give any good advice to anyone waiting to come out here? Well, it's all really well run, so there's nothing you need to worry about. But here's one thing I've been thinking... Simka mentioned in his reply to Esta that restenosis may be due in part to the air travel (changing pressures etc.). A Danish guy I spoke to today, whose wife is here for the procedure, was telling me that they have already been to New York where she had balooning. She felt amazing for the rest of the trip (a few days), then all her symptoms returned after the flight. So they're driving back to Denmark. I am seriously considering giving up my airline ticket and getting the train/boat home so as not to risk undoing the work done in the procedure (if they can do it). Having already spent a lot of money on this, it seems a bit more might be worth it, to make sure I get home unscathed. Plus, me and my girlfriend are now thinking a train journey across Europe might be a bit of a laugh...

My view is that the after-care you give yourself must be so important to 'seal the deal'. No smoking, low sat fat diet, IBT, Omega 3s etc, etc. I don't think it would be wise to have it done and then return to a life of debauchery (if that's your thing - it was mine :wink: )

Oh and anyone on a strict diet (like me) can rest assured there's loads of salad, fruit, fish etc. for breakfast at the hotel, and we found a decent vegetarian restaurant in town which is really cheap too. And if you can learn how to say "do you speak English" in Polish (like I did, thanks to my Polish students), the locals (at least one of whom per shop, cafe etc.) seem to be appreciative and I think give you a slightly better service! It goes something like this (phonetically): ch-rozmovi-ash-po-angielsku? (said quickly and with a hard 'g' in the last word).

Anyway, it's all about tomorrow now... hopefully I'll be able to sleep tonight. I'll let you know what happens as soon as I can.

Adios!
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Postby LR1234 » Tue Jun 08, 2010 10:43 am

Thanks for the update Skin, Looking forward to hearing more from you!
I hope the procedure goes well.

L
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Postby skincoll » Thu Jun 10, 2010 7:15 am

Day 4:

Phew, well the procedure's done and dusted. 6 of us had it yesterday, 5 baloonings and one stenting.

During the doppler, Simka said my left jugular had "no flow", and asked me how how I would feel about having a stent (which concerned me as I really hoped I could get away with just balooning). So being the last of the 6 on the table, I had plenty of time to worry, although you can ask the nurses for sedatives to ease your nerves. After two doses of those I was pretty mellow, which I reckon is the best way to go in, if you're nervous.

After 40 minutes, I was all done with just balooning. I don't think you can ask for stents - they just give you what they think is best, and it seems they only want to use stents as a last option.

When I came out of theatre, I noticed immediately that my hands and feet were sweaty and the pins and needles had gone, although they were almost back to the way they were before within about an hour. I therefore said to the doctors that I felt I'd restenosed already, but apparently they put so much IV blood thinner into you during the procedure that you're likely to feel your symptoms a lot less immediately after. And they said it was impossible for the vein to collapse again so quickly. So I took their word for it, kind of.

Today (the day after) I can't really report any major changes in symptoms, although after 24 hours of lying in bed pumped full of drugs, you're probably going to feel a bit rough the next day, surgery or no surgery. So I'm not bursting with energy like some have reported.

I've been for a walk around Katowice today and my balance is strong although I was hoping for a clearer head, but again, the drugs and lack of sleep may have something to do with that.

I know a lot of people have said this, but I'll say it again: I've met so many lovely and incredible people from all over the world during this experience. This really is a team effort among patients, and everyone and their families are there to support one another throughout. I will certainly be keeping in touch with everyone in my 'group', as well as those from the previous one who I've met in the hotel. My mother and girlfriend who have accompanied me have also said this has been an amazing experience because of the others here.

There has been one fantastic success story this week: a patient who had the procedure yesterday came down to breakfast this morning pushing her own wheelchair, which was a real tear jerker.

For me, hopefully I'll see the benefits over the coming weeks. I believe it's sorted, so it will be sorted! I've decided not to fly back, so as not to risk buggering up the vein at 30,000 feet, but the doctors here will tell you it's not a problem (but they will also tell you no special diet is necessary, which I don't agree with). It's just I got spooked by a story from a girl in my group who feels her restenosis when she had this done before was down to immediate air travel. So, a long and expensive journey home, but safer I think.

Alright, that's about it. It's all good, but in my experience, no immdeiate relief occurred. So I'll post again over the next feww weeks, maybe get one of those trackings going. Any questions I will happily answer...
Last edited by skincoll on Thu Jun 10, 2010 7:20 am, edited 1 time in total.
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Postby skincoll » Thu Jun 10, 2010 7:18 am

LR1234 wrote:Thanks for the update Skin, Looking forward to hearing more from you!
I hope the procedure goes well.

L


Thanks L. It went fine thank you. See post above.
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