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'
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!)
- 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.
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!
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.