CCSVI - Aussie Action!

cheerleader · Post by **cheerleader** » Sat Dec 05, 2009 5:45 pm

Hey Phil-
Glad you're home. Yes, the blood thinners may be contributing to the fatigue, but you went to work four days after surgery and a gazillion hours of flights??? Take it easy, buddy! Put your feet up, let someone bring you an icy beverage.

You've had MS for more than a few years...like everyone's said, there was some damage done to your fabulous brain. Let it heal. Drink green tea to chelate some of that iron and give you some pep. Let your body rest, get good sleep. Eat well, exercise as you can, and breathe deeply whenever possible. Suck in the O2. Jeff tells me he still feels he has MS....he still needs to rest now and then, his legs hurt when he overdoes it, he still gets headaches or grumpy. He's not perfect, but he's feeling alot better than before, and so far (thank God) no progression in 7 months.

Since you're feeling weaker in the a.m., how's about inclining the head of the bed up a bit? Give that new flow a bit of help, maybe.

Day at a time.
cheer

Brainteaser · Post by **Brainteaser** » Sat Dec 05, 2009 6:54 pm

Brainteaser · Post by **Brainteaser** » Sat Dec 05, 2009 9:36 pm

zap · Post by **zap** » Sat Dec 05, 2009 9:37 pm

Brainteaser wrote:I'm starting to think that in my case, there might now be more a problem with the rate of blood flow rather than structural deformities.

Higher than usual flow rates or lower?

(I was letting my mind wander today, and was wondering if the body would increase blood flow to the brain significantly in response to reduced oxygenation of the blood (such as from lung problems, for example) ... and if so, this would result in larger blood vessels overall - and in some cases, these expanded veins would be too large to fit through tight spaces, especially ones with postural issues that decrease the cramped space ... )

warrenkole · Post by **warrenkole** » Sat Dec 05, 2009 11:18 pm

Hi Phil,
Thank you for updating us on your experience. I wish you had better results than you describe.
Do you think you might have been better off staying in Poland for an extra week or so to recover further before flying back to Melbourne?
A 35 hour flight is a traumatic experience for anyone with MS, let alone someone that's had surgery 4 days before.
I'm surprised that no post-operation doplars were performed. Did you request any? Or wasn't that an option?
Wishing you a speedy recovery.
Z

seeva · Post by **seeva** » Sun Dec 06, 2009 12:17 am

Brainteaser wrote:Great news, folks!! :D My Melbourne vascular surgeon is going to 'bite the bullet' and operate in 2 weeks time! - first time in Oz, first time outside SanFran and Ferrara (I think) - Sorry GiCi; got in ahead of you, mate! :)

He's going to do a venogram and the refluxed right jugular by ballooning, but at this stage he's not sure about the blocked left jugular. He's a bit apprehensive about stents but will consider options.

2 riders - he needs to inform the hospital that it's a new procedure and he wants to run it past my neuro, but fundamentally he is ready to go!

Best of all, he seems your real Action Man - no beating around the bush, flim-flam; just get on with things. I think what sealed it was that I happened to email him the day after he met Drs Simka and Zamboni in

Monaco....Fate!! :)
HI PHIL MY NAME IS SEEVA FRO SYDNEY. Plase let us know the DR.FROM MELB. AUSTRALIA who you had contact regarding CCSVI
REGARDS
SEEVA

He was appreciative of all the stuff I sent him from TIMS (take a bow, Marie and Cheer :) ) and he's even joined the Facebook CCSVI site - so keep the posts coming, guys (scorpion et al, excepted :roll: ).

I can see he moves pretty fast. He even tried to get Michael Dake on the phone when I was with him, which had me wondering a little, given that with the time difference between Melbourne and SF, it would have been about 10pm Sunday night, SF time and Dake would have been just wandering off to bed with his hot toddy. :wink: But what's good is that he is keen to catch up with Messrs Zamboni and Dake to discuss detail.

I'll keep you posted.

Phil :D

:roll: :roll: :roll: :roll:

whyRwehere · Post by **whyRwehere** » Sun Dec 06, 2009 12:21 am

Seeva, would you stop posting the same thing and roll roll roll....if you have something to say, say it.

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 06, 2009 12:36 am

Brainteaser wrote: Erika - are the thinners I am on, the same as yours?

Hi Phil, I think so: Clexane, 40mg/0,4ml (Enoxaparinum natricum) for 60 days.
But: my age is 37, my weight is 56 kg, I am 168 cm high, I am a women, I have RRMS since 1996.
And my grandfather comes from Krakow - it is very close to Katowice, so I do have Polish genes, maybe it helps?

I am sure I do not have any problems at all regarding Clexane - only some little bruises.
I do not go to check my INR as there is no need to do it.
Or maybe LDN helps? I do not think so, but I am not sure.
Maybe your body needs more time for the new situation with bloodflow in your brain?
Erika

hwebb · Post by **hwebb** » Sun Dec 06, 2009 5:53 pm

Hi all,

I've been in contact with one of Dr Haacke's collaborators here in Australia. The Australian contact is working with a commercial radiology group to perform the Haacke protocol here in Australia. I should have some more info in a few days time, so will post it here if there is a development.

hwebb

seeva · Post by **seeva** » Mon Dec 07, 2009 4:57 am

HI BRAIN MY NAME IS SEEVA FROM SYDNEY. I CANNOT FIND ANY SURGEON IN SYDNEY. AS PER YOU POST YOU HAVE FOUND A VASCULAR SURGEON IN MELBOURNE. PLEASE LET ME KNOW THE DR.DETAILS TO ME. ALSO ANOTHER MEMBER FOUND A SURGEON IN SYDNEY. PLEASE THAT MEMBER ALSO GIVE US THE DETAILS ABOUT THEDR. INSYDNEY. MY M.S FRIENDS ARE VERY GREATFULL TO YOU FOR THE HELP.
REGARDS
SEEVA

seeva · Post by **seeva** » Mon Dec 07, 2009 5:11 am

HI MEMBER CURE MY NAME IS SEEVA FROM SYDNEY.PLEASE LET ME KNOW THE DR AND VASCULAR SURGEON WHO WILLING TO DO THE RESEACH THE LINK CCSVI AND M.S MY FRIENDS AND ME GO TO WESTMEAD M.S CLINC AND SEE DR.STEVE VUCIC. BUT NO HEL FROM HIM ATALL. PLEASE LET US KNOW THE DETAILS. WE ALL VERY GREATFULL TO YOU.
REGARDS
SEEVA

Brainteaser · Post by **Brainteaser** » Mon Dec 07, 2009 1:32 pm

whyRwehere · Post by **whyRwehere** » Mon Dec 07, 2009 1:41 pm

Yah, I think we are going to have to ban emoticons!

Johnson · Post by **Johnson** » Mon Dec 07, 2009 3:23 pm

whyRwehere wrote:Yah, I think we are going to have to ban emoticons!

If you use Firefox as your browser, you can right-click on any image (including emoticons) and block them with "adblock". I do that to any moving image on any page, because the flashing causes me stress and confuses my poor brain.

CureOrBust · Post by **CureOrBust** » Tue Dec 08, 2009 12:43 am

seeva wrote:... MY FRIENDS AND ME GO TO WESTMEAD M.S CLINC AND SEE DR.STEVE VUCIC. BUT NO HEL FROM HIM AT ALL. PLEASE LET US KNOW THE DETAILS. WE ALL VERY GREATFULL TO YOU.

Seva, none of my neurologists were a "help". I simply approach them in a calm and educated manner, and discuss the issue with them in a way that would require them to act unprofessional to completely disregard what I present. And if that got me nowhere, I contacted another neurologist.

I am guessing English is not your first language, so it may be easy for a neurologist to appear un-moved by any of your attempts.

I can tell you that Dr Vucic is aware of the CCSVI theory, but is not a "believer". Do not assume that the "quickest" path will involve your current neurologist. You may have to see other Dr's who are more willing to accept a complete change in beliefs. No-one said it was going to be easy.

I can't give you "my" Dr's name, as I am sure he would not want new patients bothering him about this "unproven theory". And if he found out I gave them his name, he may start making it hard for me. If I am able to "convert" him into a believer, I am sure he will wish to help all.

Until then, I will do my part with this guy, and suggest you try the same with someone else.

This Is MS Multiple Sclerosis Knowledge & Support Community

CCSVI - Aussie Action!

Dr Haacke's MRI protocol - done in Australia

RE VASCULAR SURGEON IN SYDNEY

VASCULAR SURGEON IN SYDNEY

Re: VASCULAR SURGEON IN SYDNEY