CCSVI - Aussie Action!

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

Postby ErikaSlovakia » Mon Oct 12, 2009 2:33 am

Hi Phil,
I do not know what to say. I am so sorry for your terrible experience.
I strongly hope it will be OK next time.
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 LR1234 » Mon Oct 12, 2009 5:17 am

Hi Phil,
How awful. Sounds like that dr was (as we say in the UK) a bit dodgy.
He obviously didn't know what he was doing otherwise you wouldn't have been put under anasethic in the first place.
Can you get the notes for that prodedure from the hospital? Then you will know what went on whilst you were "out of it"

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Postby Rokkit » Mon Oct 12, 2009 7:32 am

I mean what could he possibly have been doing that would have caused you pain? I felt only mildly sedated, I was certainly wide awake, the only thing I noticed looking back was that time seemed to pass really quickly. The hour seemed like it went in about 20 minutes. But my point is I felt literally NOTHING until the exact moment the stents went in. And Dr Dake checked not only my jugulars but also my azygous and lumber plexus. He went everywhere, having me hold my breath while he took pictures.
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Postby mrhodes40 » Mon Oct 12, 2009 12:22 pm

Ditto ROkkit.

Phil I am sorry. :?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you... This is my regimen thread Read my book published by McFarland Health topics
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Postby CNClear » Mon Oct 12, 2009 2:34 pm

Phil, I, too, am sorry this happened to you...I would be furious if I couldn't get the VS to tell me what the deal was...I wonder if Zamboni would be interested to hear about this...My reasoning is that if this guy didn't know what he was doing (and that sure does seem to be the case) then he may tell someone that this is bunk and that's why he didn't do anything? Then, if the rumor mill gets it, well, you know, bad news spreads faster than good...but, I wouldn't think it could hurt to send Zamboni an email and put in there that you don't, necessarily, expect him to do anything about it, but since the medical community can seem surprising small sometimes, just thought he may be interested to know some of the things that are happening...that way, IF, for some reason the VS was asked his opinion of Zamboni's technique, or of CCSVI, he may say disparaging things because, maybe he just didn't understand how or what to do once he got in your neck...and, possibly, Zamboni, would like to call him to find out what happened...I don't know, but I think maybe, if I was Zamboni, I may want to talk to this guy...whatever you do, I dont think you should just pretend the whole thing didn't happen...Could it be possible that something strange happened with the whole anesthesia thing? Like maybe you reacted badly to it and were talking or saying you were in pain and don't even remember doing that...don't things like that happen sometimes? I haven't been operated on except for a C section and wisdom teeth extraction, so i am no expert regarding anesthesia...but it almost sounds like, to me, that the VS thinks you remember more than you do...just some thoughts...keep us posted...

Lisa aka, CNClear
dx 1983 RRMS
Status: talked to Dake, waiting for appt date
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Postby cheerleader » Mon Oct 12, 2009 2:55 pm

Venous ballooning is not a general anesthetic procedure. Both Dake and Zamboni keep patients medicated, but need them awake enough to hold breath and verbally facilitate the vein opening. You could not have done that, let alone cry out in pain. Your VS has some explaining to do-
It's all so bizarre, and I'm sorry for your horrible experience.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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re phils operation

Postby loulou » Mon Oct 12, 2009 4:37 pm

Your op sounds messed up as though the surgeon was following
his own interpretation of Dakeand Zamboni's proceedures re anesthesia.But hope you are ok and there are no consequences!AND being in adelaide ,australia myself i was just about to email you
and ask for the surgeons name etc.BUTI think i'll leave it for the time being.
And i also wanted to know did you pay for it? through private health
insurance ? Im looking into that at the moment and im going to have to wait
a year cos i have a preexisting condition.
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Postby Brainteaser » Thu Oct 15, 2009 11:28 pm

In Australia, we are a bit removed from some (good) things going on in the World............and CCSVI seems one of those things. It usually means we get used to going the extra mile to get anywhere. :?

This post is a prequel to my post of a few days back of my CCSVI 'non-operation' in Melbourne.

One of the reasons I felt the VS took up my case and offered to operate was because I have a medical report and CCSVI images which show I have blocked veins, from none other than the CCSVI Godfather himself, Professor Zamboni. As I said, my Melbourne VS had met Prof Zamboni at the Monaco conference. This was just before the Bologna conference of 8 September and just after I had been CCSVI tested by Prof Zamboni and Erica in Ferrara on 27 August. So it all seemed to fit together quite neatly and looked very promising in terms of bringing CCSVI Downunder. For whatever reason things didn't turn out exactly as planned, but isn't that the way sometimes.

How I came to go to Ferrara, began back in July when I was emailing Prof Zamboni, asking if he would point me towards someone in Australia who could test me for CCSVI so that at least I'd know if I fit the profile and could then focus on treatment as a second stage. The alternative seemed to be to spend a tidy sum to go and see Dr Dake but without any confidence that I even had a CCSVI problem in the first place.

Prof Zamboni gave me a couple of names which I followed up unsuccessfully and then at an obviously weak moment, he said that if I came to Italy he would be prepared to test me himself but he wouldn't be able to treat me if found necessary, because of all his other work, the conference and so on. Maybe he thought I wouldn't be mad/desperate enough to go all that way for a 2 hour test. He may even have thought I was from Austria and not Australia (Hey, even President Bush use to mix us up!) :wink: - I'm not sure........but it was very kind of him to give me the opportunity which he probably regretted immediately afterwards given his enormous workload. Even now I understand they are very busy in Ferrara and won't have the ability to test and treat private patients properly til the new year. So hence I didn't say anything to most of you guys earlier - there didn't seem much point. Also I didn't really want to spoil Cheer's adventure seeing she was getting ready to go to Bologna, just as I was coming home. :)

Can I just go on record as saying that Prof Zamboni is one of the nicest, most committed medical practitioners you could ever want to meet. :D We MSers sure enjoy a bit of doctor-bashing but even the most hard-nosed of us here would find it difficult not to be impressed and buoyed by the man. He is a real gem! Erica, his sonographer is a very smart, skilled and stylish young woman. Forget your President Obama, if Zamboni solves the MS conundrum, they should award he and his team 6 Nobel prizes including one for being such wonderful people!).

My 27 year old son came with me to Ferrara. We managed to get some good fares through Thai/Lufthansa flying Melbourne-Bangkok-Frankfurt-Bologna. All up 35 hours each way door to door with 3 days in Bologna-Ferrara. I think I've still got jet lag! :wink: But for a not astromonical investment, we got the results we were looking for. My veins were 'shot to pieces' - and if I can get my younger son organised (the computer geek) I'll put the images and report up here soon.

You know, one of the things that really worries you as a parent with MS is whether or not your kids are going to end up the same way. My 3 kids are rapidly coming into the age frame for MS. So it was a doubley good outcome when Prof Zamboni offered to test my older son for CCSVI also, in Ferrara. 'Perfecto!!' was the cry from Prof Zamboni regarding my son's jugulars and the difference in the images from mine were like chalk and cheese. My daughter (25) is the most genetically like me so I was sure hoping for a faster expansion of CCSVI in Oz so she can also be tested ASAP.

Some of the other things from my consultation with Prof Zamboni:

- He expressed some reservations about using stents given the unknown factor. He prefers ballooning and thinks vein transplanting may be a solution.

- He says that CCSVI can skip a generation.

- When doing the doppler testing they only go through the eye or ear where there is an obvious problem which doesn't show up from the neck.

- I was a bit confused about what he thought of my azygos. It sounded like it was pretty bad and deformed from birth - so to inform my VS, I emailed Prof Zamboni just prior to 2 October, got the response the night before the op, didn't understand it entirely and therefore took a hardcopy into hospital with me to give to the VS. It seemed as if there could be a membrane over the outlet which might be corrected by catheterization.

Last edited by Brainteaser on Fri Jan 15, 2010 6:06 pm, edited 1 time in total.
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Postby loulou » Fri Oct 16, 2009 12:16 am

Yes,we definitely do have to go the extra mile for getting new experimental procedures for ms here in australia .I remember my
struggle to get ldn compounded for me in 2003
in Adelaide.
I can relate to your comments about children ,i have 2 ,and Im hoping
this ccsvi testing arives soon so my kids can have what appears to be
(at this early stage )a definitive test?
But did you pay for the op through private health insurance cos
my understanding is that they only cover ops which have a medicare number and i cant see how experimental testing and op
would have a medicare number ?
Did it come under "heart /or vascular stents"?
I come from a medical research family and ive met lots in my life time
and theyve all been highly committed people who work their socks off !
Hope you continue to go well
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Postby whyRwehere » Fri Oct 16, 2009 12:34 am

I really appreciate hearing the full story. Even though Dr Zamboni doesn't have the time to help the whole MS world, doesn't mean I don't thank God for Zamboni doing what he has.
As far as children go, I am quite worried as my daughter is almost a mini female version of her father. And she's my only one. I don't think Vit D can make veins change shape, but maybe it makes the BBB stronger, who knows, I'll try to make sure she gets some every day.
I am desperate for something to happen here in France, as in a liberation procedure, but I am afraid of the same thing that happened to you, to happen to my husband. If the people are not truly understanding and interested on their own, we are taking a big risk. We should all thank you, to know that.
Hoping for the best for all of us,
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Where to now?

Postby pgy » Fri Oct 23, 2009 11:50 pm

Dear brainteaser,

we are in Australia. Where to now on this? I guess that you need the feedback from the VS. If I was you I would be finding out asap. Perhaps your son can chase up a response if that's easier for you.

All the best.
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Postby Brainteaser » Sat Oct 24, 2009 6:05 pm

pgy & others,

It's taken 3 weeks and several calls but I have now received the venogram images for my right jugular and a 2 page letter of response from the VS. I'm going to have to go through this stuff and maybe flick the images to others - Prof Zi and/or Dr Dake, for comment and feedback.

Oz is a very conservative country in medical terms. It's going to take time for the medical establishment to get their heads around CCSVI.

I think Cheer might be right - the Universities and public bodies might be the way to go for cutting edge medical advancement. The people I have been trying to involve are all in the private sector and seem to have gone cold on CCSVI, following some initial enthusiasm. There are obviously some issues of professional indemnity, their practice image and reputation to protect, professional standing, government constraints and so forth.

If there are a number of Aussies out there who are interested in CCSVI, maybe we need to get on to relevant Uni and related professionals in various parts of the country in sort of a united front. I maybe thought (in hindsight, naiively) that by coming back from Italy with positive doppler results, that doors would start to open - not so unfortunately. I now think it's going to take more effort and gritty determination from a number of people at various levels, probably starting with the Unis.

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Postby Brainteaser » Fri Nov 13, 2009 11:25 pm

As I posted on the Poland thread, I'm off to get Sim-kared in the week commencing Monday 23 November. :)

This is really fantastic and I appreciate all the help and advice from those who have been to both Stanford and Katowice - the trailblazers (Erika - you are an absolute star!). :)

I was starting to feel like the perennial CCSVI tart! - with not much luck getting Daked, ProfZied, Ozed and even Belfasted!! :( But then, Dr Simka threw me a life-line and I'm more than happy to take it.

It's really hot down here at the moment - 30+ degree heat each day.......and it's still only Spring!! :( The heat really knocks me around, so I can't wait to get on that plane Friday for a bit of relief. 6 degrees in Katowice is starting to look pretty fine - as long as there's not too much ice around.

Clearly, I was hoping to get things going in my home town and for others to follow - but realistically, that's not going to happen for a while. The medical industry here is too set in its ways. What really makes me grumpy though is that I work all day to save so I can afford to travel overseas for medical treatments I need, whilst at the same time, paying my taxes at home so fat-cat doctors can keep telling me there's nothing they can do. If I hear 'Do no harm' once more, I'll screeaam!! :evil: ......... well, that's my whinge for the day, but it's awfully disappointing. Re CCSVI, my neuro won't discuss it, no vascular surgeon will get involved and my GP is completely opposed - I'm sure if he knew I was heading to Poland, I'm sure he'd have a coronary, and send the Federal Police down to the airport to restrain me! :wink:

There are 4 main issues I think, about Australians going to Poland for CCSVI intervention - cost, travel, communication and post-op.

* Cost - the treatment cost is approx A$5-8000 with the Oz dollar about on par with the US$. With airfares and expenses, that's about $12-15,000 all up. If it does the trick, that is money well spent which most Aussies could afford with a bit of saving and tin-rattling.

* Travel - air travel is easier for the disabled, even long flights, than most people think. Mostly the staff are fantastic and really look after you, both at airports and in flight.

* Communication - my daughter is coming with me to Poland and she speaks German which should help. Given the nature of the trip it would probably be preferable if we all spoke the same language but so be it. I'm sure the doctors' English is superb. I think the Lonely Planet Polish-English phrasebook might also come in handy.

* Post-op - I'll have the treatment early in the week and then 3-4 days observation before coming home. I'm certain Dr Simka and his team are skilled professionals who will make sure that going home will be safe and comfortable. But what happens then? That's what I'm not sure about - especially with a hostile medical profession over here. Any advice or tips from you CCSVI graduates, welcomed.

Keep you posted.

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Postby Ernst » Sat Nov 14, 2009 12:23 am

Wow, this is wonderful. And once again here are lots of curious people waiting to hear more from you and really wishing you very good things to come. Was it difficult (or easy) with arrangements with coming operation (just thinkin that you live far away from Poland)?
My wife's 3 yrs post video:

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Postby whyRwehere » Sat Nov 14, 2009 2:19 am

While wheel chair service was good in the USA and the UK, and probably is good in Poland, can I just say that it stinks in Paris.
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