CCSVI - Aussie Action!

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

Postby cheerleader » Tue Sep 22, 2009 7:56 am

Nice work, Phil.
persistence + a bit'o fate/divine intervention= good fortune

Marie's right on Dr. Quickdraw and his 45 caliber blackberry. Best way to reach us in the wild west is email. I know he'll be happy to discuss this with your doctor.
congrats, mate-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby muse » Tue Sep 22, 2009 2:04 pm

Hi Phil,
great, great news for us who are living down under!!! I’m a German born “girl” living in New Zealand and I try desperate to find an open minded doctor, a Radiologist whomsoever whow is interessted in that topic. No way, one half of them is gone fishing and the other half is working in Oz or UK. I could cry, really. :cry: :cry: :cry:
It would be just marvellous if there is any possibility to go to Oz to let fix my “brain”!
I’m living in the northern part of NZ so it's just a 4-5hours flight to Melbourne and not such an expensive thing like a journey to Italy to visit Dr. Zamboni.
Does your surgeon make all the preliminary examinations as well or did you have to bring the stuff like doppler, MRI, MRV?
I would be absolutly over the moon if there is any chance to undergo treatment next door!!
All the best dear Phil and I hope we can kinda stay in touch!
Arne aka muse
email: muse@csvi-ms.net
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Postby MrSuccess » Tue Sep 22, 2009 9:39 pm

g'day brainteaser ...well done ...this is huge ...your surgeon will be the third doctor to perform CCSVI repair. I believe Dr.Simka is almost set to also.

I think there are others flying under the radar. I get that feeling when I see how CCSVI is being looked at so quietly at Jacob's.

Is this the calm before the storm ?


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Postby Jamie » Tue Sep 22, 2009 10:24 pm

Again, fantastic!!

This guy sounds energetic enough to get hooked like Dake did.

If he can see it in some patients and help them out surely it can only grow?!

Getting carried away of course but its an exciting time!

I really thought once Mel was 'fixed' I'd drift away from this site I think I even said as much but I can't. I'm transfixed and so full of hope for everyone.

This has moved SO quickly and the speed of these developments would have been impossible without the internet.

It's mind boggling. Without this forum section (rapidly becoming the largest of all) we would have been talking to Hopkins (with grave reservations and growing scepticism) about redoing the HiCy as Mel was rapidly flaring up (with no enhancing lesions interestingly but clinically in a relapse) with few options other than that or tysabri. Tysabri is way more scary to us than keyhole surgery.

Sorry, rambled a bit there chaps!
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Postby ErikaSlovakia » Tue Sep 22, 2009 10:42 pm

muse wrote:Hi Phil,
great, great news for us who are living down under!!! I’m a German born “girl” living in New Zealand

Hi Arne!
I am sure it will work for you.
I am soooo happy for you! :D
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 Brainteaser » Tue Sep 22, 2009 11:01 pm

Thanks everyone for your support :) it's going to be an interesting ride!
(suddenly, I'm a bit nervous! 8O )

Speaking of riding, what's all this about the wild, wild west, M & C?? - Maybe Sheriff Dake and Marshall Cheer shooten up those onery venous varmits?!!! :wink:

On a sensible note, Marie - apparently my VS knows Dr Dake pretty well - it's a small world, after all, so I'd imagine there will plenty of useful discussion going on.

Guten Tag, Arne! For the moment, I'm the crash-test dummy for CCSVI over here. 8O But in time, hopefully there will plenty of others, as the procedure develops. I'm sure they will even consider NZers - as long as you don't say 'sux' instead of 'six', we should be able to sneak you past airport security :wink:

Phil
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Postby mrhodes40 » Wed Sep 23, 2009 10:08 am

WE need everyone talking we need people to stay involved. I've had my days...

I am so glad your VS knows Dake...this is taking off maybe eh guys??

TO have a day where it is known and even if it is new to doctors to have them consider it and at least entertain discussion....... TO have THEM interested enough to look it up themselves....... it sounds like soon. :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby muse » Wed Sep 23, 2009 1:22 pm

G'day Phil! You made my day if you take the Kiwis into concideration in generally! :lol: But just to let you know my hard German accent can make things really tricky. A 'sux' is nothing I can do it much worse!
But anway I’m happy as a little child under the xmas tree and I will wait what the time/you will tell us. Just two weeks to go right? :D
Best
Arne aka muse
email: muse@csvi-ms.net
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Postby Brainteaser » Thu Sep 24, 2009 12:24 am

You're right Marie - this is starting to take off amongst the medical profession internationally, around doctors who are more than credible in their areas of expertise. They may not be the 'doctors of choice' for some people (I only deal with a neurologist!) but nevertheless, experts in their fields. That combined energy will no doubt elevate CCSVI as the benchmark for MS care........... or alternatively, our skeptics' 'truthiness' will prevail, and CCSVI will be dumped into the treatments' graveyard along with everything else. :?: :?:

Interesting times ahead.

Phil
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Postby CureOrBust » Fri Sep 25, 2009 7:45 pm

OK, that's the last time I get "too busy" to read this is ms! :twisted: :evil: :D Your guy can be expecting another call the coming week!

I missed it, but how did he identify your issues requiring repairs?
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Postby CNClear » Sat Sep 26, 2009 8:26 pm

YAY Phil! Way to go!

It is not even close to call this whole thing 'remarkable!'
It is so spectacular!
I (obviously) can't find the words to describe it...I LOVE IT!

:D :D :D :D :D :D :D :D

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Postby Brainteaser » Sat Oct 03, 2009 8:46 pm

Hi All, :(

It's Sunday PM here......and I'm just starting to get it together.

Friday I had my CCSVI intervention 'operation'. This involved an almost complete general anaesthetic, apparently some exploratory work of my jugulars by venogram, no angioplasty of the right jugular as anticipated, no treatment of anything, an aborted operation and no meaningful feedback either before or after of what went on.

To say it was a gross disappointment would be an understatement.

Saturday PM was spent drafting up an extensive email to the Vascular Surgeon with loads of questions and observations. I'll give him a few days to respond and the benefit of the doubt in the meantime..........but I have my suspicions.

I feel your collective sympathy and disappointment..............but let's keep our powder dry and wait and see what the VS comes back with. I'd prefer it if people did not put a whole lot of individual comments and questions on this thead for the moment. I need to get more information before I can make any sense out of this and brief you properly - that could take up to a week.

Clearly, CCSVI is not going to come easily and it might be a 'bumpy ride'. But as with all good things, we need to stay focused and keep the end in our mind's eye.

I'll keep you posted.

Phil
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Postby Brainteaser » Sun Oct 11, 2009 10:09 pm

By now I had been hoping to tell you that after 27 years of MS frustration, the worm was beginning to turn - things were starting to look up!!!!! However, no such luck unfortunately. :(

As I advised earlier, on 2 October I went for a CCSVI intervention 'operation' at a hospital in Melbourne. This had been set up and was to be performed by a Melbourne Vascular Surgeon who I had made contact with. However, in the end the 'operation' was a complete disaster, a non-event or WOFTAM as we used to say about just about everything we did in our uni coursework (Waste Of F....g Time And Money). :evil:

My wife had gone through the Yellow Pages, a bit hit and miss, early September and this VS seemed promising as he was at the phlebology conference in Monaco at that time and after the conference he and his wife would be touring Italy at the time of Prof Zamboni's conference on 8 September in Bologna - Perfect!! I sent an email to his secretary in Melbourne, asking her to forward it on to the VS. In the email I explained about CCSVI and MS, attached research papers and a copy of my medical report detailing that I had blocked jugular veins. How did I know my veins were compromised? ...........Well, that is another story which I will come to later. I suggested that whilst travelling through Italy he might care to make contact with Prof Zamboni's office in Ferrara and get a late invitation to Bologna on 8 September.

The VS's secretary said she had passed on the email to the VS. Later, she contacted me, told me that the VS had heard Dr Simka's presentation in Monaco and was quite interested in CCSVI. She invited me to a consultation with him on 21 September - fabulous!

At the consultation, he jumped right in there and said he would balloon my right refluxed jugular but was not sure about the fully blocked left one, but he would think about it. Also, he would try to contact Zamboni and Dake prior to the operation which was scheduled for 2 October. He said he wouldn't need an anaesthetist or assistant as he was an expert vascular surgeon, whilst Dr Dake was only a radiologist - fine, this guy knows what he is doing!

In the lead up time to the operation there was hospital paperwork and so forth to do. I didn't hear from the VS and I didn't try to contact him. In principle, I believe that if you are employing someone to do something and they seem competent, it's counter-productive to get in their way. I'd just go with the flow!

Outside OR on the morning of surgery, an anaesthetist came up to me in bed and said I'd be having a general anaesthetic. He told me of his charges and got me to sign something, without my glasses on. I saw the VS in the distance. He gave me a sliding wave but didn't come over. So I asked the anaesthetist about the procedure but he quickly cut me off. I had with me a copy of an email from Prof Zamboni which I asked the anaesthetist to pass on to the VS - the anaesthetist picked up the email like it was a pair of dead undies, didn't look at it and dropped it back on the bed. :evil:

Next thing I'm being whisked into OR, tied down by the arms and anaesthetised. I tried to get one of the nurses to give the Zamboni email to the VS who was keeping his distance but she just put it away in my file. The VS was being suited up for the venogram. Eventually he came up as I'm passing out and said 'Good Luck' -and that's all he said!

Half an hour later I'm waking up in Recovery. The VS said I wouldn't remember a thing. He said they didn't see any stenosis in the left jugular. I asked how the ballooning of the RJ went. He replied that I had asked him to stop the operation because of patient pain so he obliged. I was flabbergasted but when I tried to ask him more, he took off!!

I then spent a couple of hours in a hospital ward. I asked the nurse what was happening. She thought I would be stayng over night but I understood it was a day procedure. I asked when I'd see the VS and she said probably not today as he was in OR all day. So I asked to see my patient's file. She said I wasn't permitted to see the file but she could read me bits. It was not very detailed - LJ no stenosis, RJ operation stopped due to patient pain.

The VS came to see me for literally 1 minute at about 2.30pm. He had to be somewhere else at 3pm, so he didn't have time to answer any questilons. He said I could go home now and had organised for me to come and see him in his office in just over 2 weeks.

That was it! That was my CCSVI intervention treatment. It seemed a far cry from the glowing feedback from the Dake and Zamboni operations. What do you guys think?? :?: :?:

Phil









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Postby CureOrBust » Mon Oct 12, 2009 1:27 am

Brainteaser wrote:He replied that I had asked him to stop the operation because of patient pain so he obliged.
Huh? if I am reading this correctly, while you were under, you felt pain and asked him to stop? This would mean 2 things to my reading.
1. You were not provided the correct amount / type of anesthesia and
2. he wanted to perform some intervention, but only stopped because you asked him to (which, going back to 1 would be an anesthesia issue?)

I am sure most people in an operation would ask the Dr to stop if the anesthesia was not correctly administered.

Did I read it right?
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Postby whyRwehere » Mon Oct 12, 2009 1:27 am

I feel very badly for you; it's obvious he didn't really know how to proceed and then got cold feet. I think a big mistake was knocking you out...I thought it was important for the patient to be AWAKE for the procedure. Sadly, it doesn't look like giving information to people is enough, they have to be interested. If they aren't, they won't bother. I hope you try again, maybe go to California and apply for financial aid at Stanford. I am considering that for my husband for the future, if I can't get anything happening in France. Or go to Italy, if they are willing...it's close enough!
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