Author Topic: AN Specialists in Sydney AU  (Read 3127 times)

DodgeAU

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AN Specialists in Sydney AU
« on: July 18, 2019, 01:11:23 am »
Hello all,

I recently moved from Melbourne to Sydney AU. Appreciate if anyone has experience or recommend specialists to consult for monitoring or treatment of AN.


Best regards
Oct 2019:  12x7 mm
                 Watch mode
Mar 2019: 7.5x5.5 mm              
                Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus

SP

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Re: AN Specialists in Sydney AU
« Reply #1 on: July 25, 2019, 01:58:17 am »
Hi DodgeAU,

Welcome to SYD, and to the world of AN . I did the rounds of many Sydney neurosurgeons a few years ago, before I decided on CK treatment in US. I now monitor my AN locally with Dr Ben Jonker (neurosurgeon), he works out of St Vincents in Sydney.

Happy to chat with you if you'd like to send a PM.

best luck

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17-19, 2015 (Drs. Chang & Soltys)

DodgeAU

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Re: AN Specialists in Sydney AU
« Reply #2 on: October 14, 2019, 06:12:53 pm »
Thank you Stella,

I have just attended a consultation with Dr Biggs also works at St Vincents in Sydney. I have also got my MRI one year after diagnosis. Unfortunately my AN has rapidly grown from 6mm to now 12mm in year. My next MRI is after 6 months and the Dr has told me to start thinking about treatment either surgery or radiation.

Besides tinnitus and hearing loss, no additional symptoms within 1 year after diagnosis.

I really want to wait and watch as long as possible before jumping into treatment but I'm not sure for how long.
« Last Edit: October 14, 2019, 06:26:26 pm by DodgeAU »
Oct 2019:  12x7 mm
                 Watch mode
Mar 2019: 7.5x5.5 mm              
                Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus

SP

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  • Posts: 135
Re: AN Specialists in Sydney AU
« Reply #3 on: November 01, 2019, 05:34:50 am »
Hi DodgeAU,

I'm sorry to hear of the rapid growth, 6mm in 1 year is a lot more than the usual 1-2mm. It makes sense to be consulting for your next steps and Dr Biggs is a very well respected surgeon too. All the best for the next MRI, i know how stressful they can be.

take good care

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17-19, 2015 (Drs. Chang & Soltys)

DodgeAU

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Re: AN Specialists in Sydney AU
« Reply #4 on: February 24, 2021, 03:48:10 pm »
Hi Stella

Hope you are doing well!!

It's time for me to have a treatment because my left AN is still growing for the past 2.5 years.  There is GK in SYdney but I have decided to go for Cyberknife. 

The only Cyberknife in AUstralia is located in Perth, so need to travel. My GP has organised the referral letter to them and hopefully get consultation to their Dr's very soon.

Cheers
Oct 2019:  12x7 mm
                 Watch mode
Mar 2019: 7.5x5.5 mm              
                Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus

SP

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  • Posts: 135
Re: AN Specialists in Sydney AU
« Reply #5 on: April 04, 2021, 04:44:06 am »
Hi DodgeAU,

I just saw this message... Having a consultation with Perth CK sounds like a good plan, a little far but worth it, hopefully you'll have some cost coverage with Medicare if you go ahead.

have you heard back from them yet?

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17-19, 2015 (Drs. Chang & Soltys)

DodgeAU

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  • Posts: 14
Re: AN Specialists in Sydney AU
« Reply #6 on: April 05, 2021, 06:02:44 pm »
I believe Cyberknike in Perth is fully covered by Medicare so there is $0 upfront cost for patients.

I had consultation with them and agreed to wait until June this year, and if there is significant growth - we are planning to do CK sometime before end of the year.

We are lucky in Australia to have this Cyberknife treatment free of charge for Australian residents :).

This machine looks fairly new and advanced I wonder of there are any people in the forums who has tried and experienced this CK in Perth.


Oct 2019:  12x7 mm
                 Watch mode
Mar 2019: 7.5x5.5 mm              
                Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus

mwatto

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  • Posts: 62
Re: AN Specialists in Sydney AU
« Reply #7 on: April 09, 2021, 02:15:34 am »
Hi Dodge I live In Perth and had Cyberknife at 5D Clinic - you welcome to contact me anytime. Mine was two and a half years ago...some shrinking no side effects. Mine was cystic and 2 cms.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

 


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