CCSVI - Aussie Action!

Brainteaser · Post by **Brainteaser** » Sun Mar 14, 2010 4:41 pm

The contact details from Professor Thomson of an IR who can do a CCSVI op in Sydney............

Professor Lourens Bester
St. Vincent's Hospital
Sydney
02-83822327

Downunder · Post by **Downunder** » Sun Mar 14, 2010 6:24 pm

Just wishing Katzi, Mark's wife, all the best for tomorrow and to Helen on Wednesday.

See you on the other side!!

Jennifer

Kar1 · Post by **Kar1** » Sun Mar 14, 2010 7:21 pm

Hi, I Live in Auckland NZ, can someone provide me with Prof T's contact details so I can contact him to see if he can recommend a Surgeon in Auckland? Booked for Doppler on 18th, want to see VS as soon as. To everone in Aussie who has already been treated, you guys are fantastic making this happen. For once I don't mind saying Aussies rock.

hwebb · Post by **hwebb** » Sun Mar 14, 2010 8:43 pm

thanks Jennifer - good luck to yourself and Katsi too!

I'm not so scared anymore. Had a few days where my head feels like it's in a vice (lotsa pressure inside)...so hoping the procedure brings pressure relief.

excited - it's getting closer

nico · Post by **nico** » Sun Mar 14, 2010 10:29 pm

howdy all,

it's three days post op, l'm now pain free, alert, can feed myself, brush teeth without risking the loss of an eyeball and am able to lie flat without gagging...go katzi and helen, ALL THE BEST, cheers, nico

Kyles · Post by **Kyles** » Sun Mar 14, 2010 11:19 pm

Hi Everyone,

Just been reading your posts about finding CCSVI help in Australia:

My brother and I both have MS and recently went down to Melbourne from Canberra to have our jugular veins ultrasound tested. We both have greater than 50% stenosis in both veins. The radiologist who tested us (and has been testing a heap of MS patients) is Dr Julie Gregg at the Melbourne Radiology Clinic in East Melbourne.

Testing using Doppler Ultrasound:
Dr Julie Gregg
Melbourne Radiology Clinic at http://www.melbourneradiology.com.au/

Melbourne Radiology Clinic
Ground Floor,
3-6/100 Victoria Parade
East Melbourne VIC 3002

enquiries@melbourneradiology.com.au

phone: (03) 9667 1667

fax: (03) 9667 1666

If she finds that you have greater than 50% stenosis in either jugular, she is then referring patients to Professor Ken Thomson at the Alfred Hospital.

http://www.health.gov.au/internet/msac/ ... /thomson-1

Professor Ken Thomson
Director of Radiology - The Alfred Hospital
55 Commercial Road
Prahran
Phone 9076 2536

I hope this information is helpful.

Kylie

friday_fc · Post by **friday_fc** » Sun Mar 14, 2010 11:53 pm

oops

. lol

seeva · Post by **seeva** » Sun Mar 14, 2010 11:59 pm

Brainteaser wrote:The contact details from Professor Thomson of an IR who can do a CCSVI op in Sydney............

Professor Lourens Bester
St. Vincent's Hospital
Sydney
02-83822327

Hi members my DR.PAUL THIBAULT is sending me and another 2 M.S Patients to DR.BESTER on 28thof april for venography and possible procedure on the same day All us have severe stenosis of the R INTERNAL JUGULAR VEINS.And part of DR.PAUL TRAILS PATIENTS.If all worked out the way he wants. then DR. BESTER is the his clinic's interventional radiologists.
Prof .THOMSON IS also DR'BESTER'S COLLAGUE TOO.
Very soon DR.PAUL WILL SETUP HIS SPECIAL CLINIC FOR M.S PATIENTS
TO TREAT CCSVI IN SYDNEY.
regards
seeva :roll:

avantitech · Post by **avantitech** » Mon Mar 15, 2010 12:58 am

Improvements Post Op + 11 days

G'day Folks

1. My 'slow' walking gait - specifically right leg and foot - is straighter and under better control. Whereas at a faster pace gait still falters and am still walking lame due to weakness of right leg muscles. I don't expect miracles...this needs lots of work to regain function.

2. Thinking more quickly and clearly during conversation & discussion. Noticeably less emotional lability.

3. Voice control and strength is retained at same level as of last report...no further improvement. Breathing control just a touch better and throat feels relaxed.

4. Swallowing improved - no choking on saliva or food/drink to date as opposed to once or twice a day regularly.

5. Sleeping is restful and I've noticed time to sleep is shorter rather than a tortured struggle to even get to sleep. Waking rested, fresh..not tired as I had for the last few years.

6. Fatigue remains less pronounced perhaps due to more restful sleep. I can't remember the last time I had a leg spasm at night time.

7. Bladder urgency & evacuation at night reduced to 1 if at all...none last night. I guess what is happening is that bladder is evacuating more completely than before...if bladder capacity~600ml, threshold~300ml ...bladder filling rate ~43ml/hr for 8hrs=340ml, micturition@~300ml

8. Hand and arm tremor appears reduced. Noticed in food preparation, when holding cutting and handling. Even holding a glass to drink.
=========================================
All my best wishes to Katzi and Helen for their procedures tomorrow and Wednesday.

Cheers,
..Adolfo

For my Italian friends & family O/S:

1. La mia andatura ambulante meno veloce è meglio.. muovo il piede specificamente più diritto è sotto migliore controllo. Considero che al passo più veloce l'andatura è ancora esita e zoppico ancora male dovuto alla debolezza dei muscoli di destra del gamba/piede. I non prevedo i miracoli...ciò ha bisogno di esercizio per riguadagnare la funzione.

2. il pensiero è più rapido e chiaro durante le conversazioni & discussioni. Notevolmente meno labilità emozionale.

3. Il controllo e la resistenza di voce è mantenuto allo stesso livello a partire dall'ultimo rapporto. Nessun altro miglioramento. Il controllo respirante appena un poco più meglio e gola si ritiene rilassata.

4. L'Inghiottire è migliore..nessun soffocamento sulla saliva o alimento o bevanda fin qui in contrasto con una volta o due volte al giorno regolarmente.

5. Il sonno è rinfrescante e ho notato che il tempo che ci vuole per dormire è più breve piuttosto che una lotta torturata persino ottenere il sonno. Risveglio riposato, fresco...non stanco come per gli ultimi anni.

6. L'affaticamento rimane forse meno pronunciato probailmente perchè dormo più bene. Non ricordo l'ultima volta che ho avuto uno spasmo della gamba destra alla notte.

7. La urgenza della vescica & l'evacuamento alla notte sono ridotti a 1 .. nessun ieri sera. Indovino che che cosa sta accadendo è che la vescica si evacua più completamente di prima.

8. Il tremito del braccio e della mano sembra ridotto. Notato nella preparazione del cibo quando tengo utensili per tagliare. Anche il tenere un bicchiere in mano per bere è piu' controllato.

Saluti a tutti! Viva La Liberazione. Viva Prof Zamboni & Prof Thomson!
..Adolfo

elaine · Post by **elaine** » Mon Mar 15, 2010 1:30 am

Good luck Katzi abd Helen for tomorow I will be thinking of you both.
Aldofo and Nico thank you for letting us know how well you are both doing that's great.
I can't wait to have it done my memory and concentration is getting worse.
Elaine

Opera · Post by **Opera** » Mon Mar 15, 2010 1:34 am

CureOrBust wrote:Thank you for uploading your video, and glad to hear it all went so well.
kezzcass wrote:Checked RIJV and there was stenosis at the jugular valve (which was inverted). He ballooned this no probs. Then checked the LIJV and it was almost completely blocked at the inverted valve

The inverted valve, did Dr T discuss with you what would happen there? and ballooning at a valve?

My very limited understanding is that the valve issue is specific to the right internal jugular vein only. It can be detected by a scan done in accordance with the proper protocols and also with the injection of the dye. I am not a medical professional so stand to be corrected. Just a suggestion that people can raise this potential issue with their IR/VS and ask whether the issue is relevant to their specific case.

Phil/Seeva
Thanks for the information re the Sydney contact.

lodgernz · Post by **lodgernz** » Mon Mar 15, 2010 3:25 am

Hi all, I had a link to a pdf of the Doppler protocol for CCSVI, presumably that of Dr Menegatti, but the pdf is broken. does anyone know where a good copy is please? I have the MRV protocol.
Cheers,
Roger

lodgernz · Post by **lodgernz** » Mon Mar 15, 2010 3:41 am

Folks, I just posted this on the Big Names thread, but it should be here too.
Heard today from Dr George Koulouris at Melb Radio that they now have the software to do MRVs to the Zamboni protocol.
cheers, Roger

seeva · Post by **seeva** » Mon Mar 15, 2010 4:55 am

HI ALL I just recived a letter from DR. PAUL THIBAULT that he is ready to
see any M.S sufferes now at his newcasle clinic for doppler examniations and then he send all the patients to ST'VINCENT HOSPITAL for venography and L.P by DR. BESTER. By end of may he plan to stup his M.S FIRST CLINIC IN BONDI JUNCTION.
CONTACT TEL.NO.0249610688
regards
seeva :roll:

Downunder · Post by **Downunder** » Mon Mar 15, 2010 2:30 pm

I know of several people who have had their doppler done (at $300) with a result of no stenosis, but abnormal blood flow. These people have been recommended to do the MRV (at $1300).

However they've talked to Prof T. and he recommends a venogram, as the MRV may still not show what the problems are, but the venogram will.

So before you spend that amount of money, talk to Prof T. he knows that the doppler numbers mean.

Consider coming to see Dr Julie for your doppler, or get your local Path Lab to talk to her, if you're not in Melbourne.

Jennifer

This Is MS Multiple Sclerosis Knowledge & Support Community

CCSVI - Aussie Action!

Good luck Katsi and Jen

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