CCSVI - Aussie Action!

[Downunder]

Johnson,

Being new to this site I decided to 'bite the bullet' and read the 60 page tread. I got to page 43 and Cheerleader wrote after Jeff's diagnosis of CCVSI.
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quote...........
Dr. Dake used MRV- magnetic resonance venography. This is a much safer way to see the veins and stenosis, and allowed us to skip the TCD doppler step and go straight to the veins.



Two MR techniques used for venous imaging include two-dimensional (2D) time-of-flight (TOF) MR angiography and three-dimensional (3D) gadolinium enhanced gradient-recalled (GRE) imaging. TOF is a widely used, noninvasive technique used for the evaluation of the venous system. However, due to saturation and flow effects, which may result in non-diagnostic studies, three-dimensional (3D) gadolinium enhanced gradient-recalled (GRE) imaging may be used for problem solving. Alternatively, may centers, including our institution, now forgo TOF and go directly to a 3D contrast-enhanced approach.


This is from the New York University MRI site, so NYU is a place to go on the east coast.

Dr. Dake used gadolinium enhancement, and then had the scans downloaded onto his computer, where we saw Jeff's complete venous system from top to bottom.
.....................................

So, as I have never had any contrast for any MRI I'm going to go ahead with it and suffer the concequences, as I beleive this will give me the best results.

Thanks for your research. It nice to know I have freinds in cyber space.

Cheers DU

[Johnson]

No worries, DU. If they say that they need enhancement, I will do it too. I just prefer not to.

Being that we are so close to remedying CCSVI/MS, I would not worry about it so much. I will be doing major chelation after I am Liberated, anyhow.

Best of luck!

[ACE]

Hi everyone.....I have been working along side a radiologist in Sydney and he now knows the exact protocol to perform MRV imaging on anyone that requires it.......I have had mine done and we found a stenosis i my right jugular vein......It’s at Castlereagh Imaging in Edgecliff, just get your Dr or neuro to refer you for an MRV when there request the same protocol that Dr Alexander Sima had, the head radiologist there knows everything to do his name is Dr Houang he is very helpful and caring.......Now if anyone knows of a vascular surgeon who is onboard his contact would be much appreciated........thanks Alexander

[Brainteaser]

XX

[hwebb]

Downunder's Melbourne MRV will happen tomorrow too. Lot's of radiologists are getting onboard. Can't wait for Downunder's impression/feedback.

I contacted my old radiologist to get my old MRI reviewed in light of my recent Doppler Ultrasound results. He was happy to review, and happy to read the Zamboni/Haacke articles.

He hasn't said whether his radiology group can do the appropriate MRV protocol yet. Hopefully word soon

hwebb

[LR1234]

How you doing Phil? How come you have not added yourself to the tracking thread yet??? We need some Poland treated people to post.

[ACE]

Hi Phil and every one else, I am not practicing, I have not practiced in over 20 years, however I do have MS, and there for probably am better informed than most Neurologist on the subject, I already have been in contact with Seeva and he is going to the Edgecliff Radiologist.......unfortunately I do not know any VS Dr.....I have been a fringe dweller, basically keeping away from Western Medicine.....hoiwever I used my Credentials to get the Radiologist on board he is very very on the ball Dr Houang......anyway we all need a Vascular Surgeon so keep your ears to the ground.........cheers

[CureOrBust]

In Sydney too - Cure, Seeva, are you there?

Catch up mr clooney, already called him, he had the day off today. Will hopefully speak to him tomorrow.

The problem being I have already had an MRV of my head and neck (nothing obvious in those regions), I need to organise one of my torso.

But hopefully this will lead there, the sad thing is, these guys are my "local" radiologist, and I kept ringing everywhere else... I actually called them, and the receptionist just asked me to fax the details over.

[ACE]

IMPORTANT INFO ABOUT MRV AT EDGECLIFF CENTER
I may have given everyone the wrong idea, firstly Dr Houang is the head Dr there, he does not as such see or speak to patients, I spoke with him today, and it seems that already quite a few people have called to speak to him, this will only get him and his staff off side, and make it hard for everyone, PLEASE I have done all the necessary ground work, so just go through the proper channels and just get a refferal for an MRV for CCSVI, PLEASE DO NOT HASSLE Dr Huoang, thats not what I posted the post for, you can imagine that he is now being inundated with people calling him, please dont just do it the proper way.....thanks.....If you ask your Dr to refer you for an MRV for CCSVI with attention to Dr Huoang it will be fine......PLEASE THIS GUY IS ON BOARD BUT PEOPLE ARE STARTING TO HASSLE HIM....DONT

[ACE]

Please I cant stress enough the importance of not calling to speak to Dr Huoang, just like you cant call a Specialist without a referral its the same with him, I got to work with him and put myself through hours of MRV testing as a guinea pig because I am a Dr...........just trust that all the ground work has been done and dont rock the boat....simply ask your Dr to refer you to Edgecliff Castelreagh Imaging center for a MRV for CCSVI and mark it attention to Dr Huoang.....PLEASE RESPECT HIM AND ME BY ADHERING TO THIS, and we all will help each other....thanks Alexander

[LR1234]

Ace your probably better to remove his name and call him Dr X until he gives you the go ahead to tell patients.

[Downunder]

Bad news Guys,

With reference to my MRV yesterday, it appears my neuro really didn't know what I was asking for as I turned up with the protocol from Dr Haake (only received Friday morning) and sent the technicians into a panic!! One liason person was aware of what I wanted, but as I wasn't privy to their conversations, I don't know what I got done in the end.

They did say, however that the machine wasn't able to do all of Haake's tests. BTW it was at a public hospital and as things were not working out as I had hoped any info about the machine itself was irrelevent.

I'll have to wait a week or so to contact my neuro and see what the results were. An email from him yesterday said he (quote) "needed to get himself more informed". So there is a spark of light.

Too hot here in Melbourne to think today and I need time to decide that to do next. I don't have years to wait for this to be recognised. I need this now!!

Regards DU

[Lovafish]

Hi all
New to the site but not new to MS.
Can anyone provide me with an update on who can treat MS via CCSVI in Melbourne?
Tried most things to rid this terrible disease but o no avail to dtae - will pretty well try anything
Peter

[seeva]

That's terrific, Alexander - well done! It is good that you are a medico yourself.

In Sydney too - Cure, Seeva, are you there?

You may have read my misadventures in Australia. Seeing you are a doctor and you may know some of the VS people I have dealt with, please PM me, but they are mainly in Melbourne.

Phil

Hi phil thank you very much for your conceren about me.Now i have found
a good friend ALEXANDER IN SYDNEY.We two investigating any radiolist can
do the MRV/DOPPLER examination and find few imaging center can do those test. in SYDNEY.Next step to find a VS IN SYDNEY.My nero told me that he can find one in SYDNEY.ALEXANDER also using my nero. So before end of jan2010we ill fin one in SYDNEY.
THANKS SEEVA :roll:

[mazza]

That's great news Seeva and Alexander. Thanks for your efforts. Seeva have you got a new neurologist? I tried sending a pm but it didn't work. If you could let me know the name here or through a pm I would be most grateful.
My neurologist has not been willing to help me. I was prepared to go to Melbourne but if testing can be done at home in Sydney that would be terrific.