CCSVI - Aussie Action!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Brainteaser
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Post by Brainteaser »

XX
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ErikaSlovakia
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Post by ErikaSlovakia »

Hi Phil!
I also think I need more time to be able to say what is really better.
I am sure about my fatigue, stamina and heart beating.
I am more sensitive to weather changes.
In case I can help you with something let me know!
Take care!
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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Brainteaser
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Post by Brainteaser »

XX
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whyRwehere
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Post by whyRwehere »

Brainteaser, can you just go to a GP and say that you had a procedure, but are about to run out of the medication needed to keep you well? Surely they have an obligation to make sure you stay ok? And what you said about trying anything half decent, I'm with you there. What other choices do we have?? Useless drugs or nothing??? Well we do all we can that truly doesn't hurt, here.
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mrhodes40
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Post by mrhodes40 »

The second thing is that I look about 5 years younger. Everyone is commenting. My face has more colour and vibrancy and some age lines are gone, with a smoother complexion; again where I didn't appeciate there was even a 'problem' beforehand.
I had this dramatic difference as well, everyone from my family to random people like the receptionist at my dentist commented on how good I looked so "fresh" and "bright...." Many didn't even know what I;d had done.

My primary care doc said it best "you used to look drawn and tired all the time. You look 10 years younger now" :D

Really a fun thing right Phil?!
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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CureOrBust
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Post by CureOrBust »

Brainteaser wrote:If you want any sort of mental picture of how CCSVI has influenced me so far - think Brad Pitt on crutches, talking like Russell Crowe!! 8O :wink:
mrhodes40 wrote:My primary care doc said it best "you used to look drawn and tired all the time. You look 10 years younger now"
ooo... that could be a bit of a worry, CCSVI treatment has appeared to severely affected Brainteasers ocular system, and possibly affected marie's gullibility. :P :wink:
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seeva
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Post by seeva »

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!! :)

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
HI PHIL Please let me know the vascular surgeone's details who is the one you met in MELBOURNE.So y neruo wants to contact regading the right doppler or MRV scan he has to send me to a RADIOLOGISTS to find any stenosis in my neck veins.
your helps would be gratefully appreciated
regards
SEEVA :roll:
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hwebb
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update for Seeva

Post by hwebb »

Seeva,

I believe Phil (Brainteaser) had his doppler ultrasound and MRV done in Italy. He tried to have an operation in Melbourne...but the Melbourne vascular surgeon DID NOT operate. Phil then flew to Poland to have the vascular surgery.

The Melbourne vascular surgeon did nothing useful.

hwebb
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Brainteaser
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Post by Brainteaser »

XX
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seeva
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Re: VASCULAR SURGEON IN SYDNEY

Post by seeva »

CureOrBust wrote:
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.
HI MEMBER THANKS FOR YOU REPLY YES MY ENGLISH IS NOT GOOD, ENGLISH IS MY SECOND LANGUGE But that does not go to help for my M.S. If i go to POLAND next year i need to know polize languge to see DR.SIMKA. My current neuro send me to WESTMEAD PRIVATE HOPITAL'S RADIOLOGIST FOR a MRV SCAN on 29th of DECE.From the result he will arrange a V.S in SYDNEY. So my friends and i will find the V.S in SYDNEY soon. WE do not need your help now. WE all want to contact PROFESSOR JOHN POLLARD in the new year. I have met DR.M.BARNETT in the past.I have a appointment in april 2010 to see him. HE also good DR. CLINIC with PROFESSOR POLLARED.So member thank you very much for your helps.Take care.
REGARDS
SEEVA
n
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.
:roll:
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whyRwehere
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Post by whyRwehere »

SEEVA :roll:
Are you just being a pest? I have to say, that is what it seems like, otherwise you wouldn't keep asking the same question over and over...I have to assume you are a troll.
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Salvatore24
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Post by Salvatore24 »

I don't think that is the case whyR. First of all, English is not her primary language, nor do we know how MS is affecting her mental ability (reading, writing/typing, comprehending).
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whyRwehere
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Post by whyRwehere »

She (?) writes, but never seems to READ the response. Believe me, French is not my first language, but I make an effort and can get the gist, when faced with written French. Then there is Google translate.... And what about the constant reprinting of what other people said...what is that supposed to mean??? Sorry, but I am not believing someone would be able to register and ask questions here, but not get it that there was no one in Sydney for testing!
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CureOrBust
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Re: VASCULAR SURGEON IN SYDNEY

Post by CureOrBust »

seeva wrote:If i go to POLAND next year i need to know polize languge to see DR.SIMKA.
You will not have to learn Polish to see Dr Simka. DR Simka speaks English as well as Polish.
seeva wrote:My current neuro send me to WESTMEAD PRIVATE HOPITAL'S RADIOLOGIST FOR a MRV SCAN on 29th of DEC.
This is good news! Congratulations, an all the best.

seeva wrote:WE all want to contact PROFESSOR JOHN POLLARD in the new year. I have met DR.M.BARNETT in the past.I have a appointment in april 2010 to see him. HE also good DR. CLINIC with PROFESSOR POLLARED.
In that same clinic, there is a third Neurologist, a woman. I have never consulted her, however, she is the only one that has said "hello" to me while I wait to see Prof Pollard. I also saw her go to the chair of her next patient and greet him and help him to her consult room (he didn't really need the help). So she seems to be someone who "cares" or treats the patient a little differently to the others. She was also on the paper that Pollard and Barnette and prineas published earlier this year, questioning the Auto-immune pathology of MS. MAYBE she would be more open to new ideas as well? (yes a stretch, but I did get a different "vibe" from her; and my eyes are fine, I do not think I look like Brad, or try to woo our cheq friends with niceties... like a Mr clooney)
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Algis
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Post by Algis »

Go ahead Buddy; ask her ;)
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