Author Topic: AN Specialists in Sydney AU  (Read 8292 times)

DodgeAU

  • New Member
  • *
  • Posts: 25
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 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

  • Full Member
  • ***
  • Posts: 164
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
2.3 x 2.2 Left AN (June 2022) @7yrs
2.9 x 2.9 (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

  • New Member
  • *
  • Posts: 25
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 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

  • Full Member
  • ***
  • Posts: 164
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
2.3 x 2.2 Left AN (June 2022) @7yrs
2.9 x 2.9 (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

  • New Member
  • *
  • Posts: 25
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 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

  • Full Member
  • ***
  • Posts: 164
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
2.3 x 2.2 Left AN (June 2022) @7yrs
2.9 x 2.9 (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

  • New Member
  • *
  • Posts: 25
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 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

  • Full Member
  • ***
  • Posts: 232
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.
MRI 2021 stable no change
MRI 2022 stable no change.

DodgeAU

  • New Member
  • *
  • Posts: 25
Re: AN Specialists in Sydney AU
« Reply #8 on: February 22, 2022, 05:22:01 pm »
Thanks Michelle, I have finally decided to go for Gamma Knife instead. I am scheduled for Gamma at Peter Mac in Melbourne on 24 March 2022.
I am very excited at the same time bit anxious not on the radio therapy but on the fitting of the mask in the head :)
Oct 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

donjehle

  • Sr. Member
  • ****
  • Posts: 338
Re: AN Specialists in Sydney AU
« Reply #9 on: February 22, 2022, 05:43:59 pm »
Best wishes next month on your procedure, Dodge AU!

Help me to understand your anxiety with the mask.  If I have GK, one place I'm considering uses the head frame, the other uses the mask. The idea of the pins in my skull from the frame is a bit unnerving to me,but what is your concern about the mask?  Is it more claustrophobic?  At some point I may need to make that decision.  The doctors at both place I'm considering are excellent and have well-proven track records.  It may come down to whether I want the frame or the mask.  And I'm not sure I understand the issues with the mask?

Thanks!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DodgeAU

  • New Member
  • *
  • Posts: 25
Re: AN Specialists in Sydney AU
« Reply #10 on: February 22, 2022, 10:42:23 pm »
Thanks Don, as for me they will be fitting a head frame like going to put some screws in my head with help of some anesthesia on the area. I think this is the most painful part of GK treatment as the radiation itself is painless I believe. The whole appointment and procedure will be from 6:45am to around 2pm but according to the staff the main treatment will only last half hour to 1 hour. The rest is like preparation including MRI, head frame fitting, planning, etc etc.

Mine had a rapid growth from 6mm at diagnosis 3.5 years ago, now it close to 20mm and decided that this is the time for treatment.

Are you sure they can use just mask for GK? Normally a head frame is fitted but if there is another option I would definitely consider it.

Let us know what you have decided to do.
« Last Edit: February 22, 2022, 10:57:11 pm by DodgeAU »
Oct 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

donjehle

  • Sr. Member
  • ****
  • Posts: 338
Re: AN Specialists in Sydney AU
« Reply #11 on: February 23, 2022, 10:44:24 am »
Hi DodgeAU!

Thank you for your quick response!  I certainly understand your reluctance and anxiety about the head frame.  From what I have read, that is actually the worst part of the GK procedure, but I am told that it really isn't as bad as it sounds.  But then I have not experienced it either.

I do not know what is available in Australia, but CyberKnife has used a mask instead of a head frame for years.  And some people have gone to CK for that very reason.  So, the makers of Gamma Knife have noticed that and have that as an option on their latest model of the GK.  I have had a consultation with a neurosurgeon at Emory University hospital in Atlanta, and he told me that if I have the procedure done there, they have the latest model of the Gamma Knife which I believe is the ICON, and I would have the mask, not the headframe.  You have to used the headframe with the previous model, the Perfexion, and the other previous models of the Gamma Knife.

The other place I am considering uses the headframe, and the reason they state for doing it rather than using the mask is that they have wonderful results with the headframe which holds the patients heads perfectly for them.  Using the mask allows a tiny bit of movement.  The CyberKnife accounts for that, and I'm assuming the GK Icon does, too, but the other hospital does not want to introduce a new possibility for movement when they have had great success with the headframe.

So that is how I understand the two options for the GK at this time.  Maybe someone who knows more or has experienced more can shed further light on it.

And again, my dilemma is do I go with Emory which uses the mask with the GK Icon, or do I go with the tried and true headframe which would not allow the slightest movement?  I am still trying to decide, but my AN is small like yours was, so I have time to decide.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DodgeAU

  • New Member
  • *
  • Posts: 25
Re: AN Specialists in Sydney AU
« Reply #12 on: February 24, 2022, 10:52:31 pm »

I just checked with the hospital in Melbourne and yes they have the latest Gamma knife machine there, called Icon. They also offer both the mask and head frame that you have described above. I am trying to confirm with them which one are they planning for myself however my understanding is that the mask is used for multiple doses while the head frame is for the single dose of radiation but I could be wrong.

From recent appointment with the neurosurgeon, he told me that it will be single dose of radiation. 



Oct 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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

donjehle

  • Sr. Member
  • ****
  • Posts: 338
Re: AN Specialists in Sydney AU
« Reply #13 on: February 26, 2022, 04:26:29 pm »
I am so glad that the hospital in Melbourne has the Icon!  So, you have a number of options.  You can have the mask or the frame.  And my understanding is that with the Icon, you can do a single dose or you can do fractionated (or multiple) doses.  The Icon gives more flexibility over the previous GammaKnife models.

The head frame is used for a single dose.  That is true.  You really can't easily do multiple doses with the head frame as I understand it.

But I don't believe that having the mask requires that you do fractionated doses.  If you are concerned about the head frame (and I could understand why), you should be able to do the mask with a single dose.  But you probably should ask your neurosurgeon's office.  I am sure they could give a definite answer there.  You don't have to have pins in your skull for the mask, so that may cause way less anxiety for you.

I am eager to find out what will happen with you, DodgeAU!  Keep us posted!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DodgeAU

  • New Member
  • *
  • Posts: 25
Re: AN Specialists in Sydney AU
« Reply #14 on: March 24, 2022, 01:05:13 am »
Today 24/3/2022, I went to the hospital in Melbourne for the GK treatment.

First thing done was to get all my vital signs, then put an injection portal for the contrast to be used later. I also asked for calming tablet and for nausea as I was bit anxious when I arrived in the hospital.

Then I went to meet the neurosurgeon for head frame fitting. Here I was given injection for local anaesthetic on 4 locations in my head. Shortly I felt numbing in the four locations and they started screwing the 4 pins in my skull. I did not feel to much pain because of the anaesthesia but I started to feel the tightness in my head. But if pain and tightness here and there. The frame used was very light one and is plastic and not a metal.

Then went to MRI scan with head frame on.

Then went to CT scan with head frame on.

Doctors then analyse the results and there is misalignment on images. The neurosurgeon checked my head frame and found out that it moved a little bit. I notice it during the CT scan when they tried to attach my head frame into the bed and I felt pain.

Neurosurgeon has then adjusted my head frame and fixed it. I started to have head aches and was given an ibuprofen and it helped.

I was returned to do another CT scan because the first one was misaligned.

Doctors then planned the GK treatment and dose after getting all the results of the scan.

Then the main treatment occurred for about 30 minutes in the GK machine. It’s painless and very quite. I was given 12.5 Gy for the one shot of radiation.

My head frame was removed and out antiseptics on the 4 pin locations.

Headache is gone after they removed the head frame.

The procedure went very smoothly except for the head frame becomes wobbly when attaching to the CT scan bed.

Very relieved, and very thankful to the doctors at Peter Mac at Melbourne.

Now just resting in the hotel waiting for some hot Vietnamese food that my wife has ordered. 😃
« Last Edit: March 24, 2022, 01:07:25 am by DodgeAU »
Oct 2022: MRI shows no growth, hemifacial spasms 
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm treatment recommended
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