Who to see in Australia?

[margaretm]

Hi,

I posted a couple of weeks ago about my partners AN which was diagnosed about a month ago.  Thanks for the info people on this site posted.

We have now hopped over the ditch from New Zealand to Melbourne (as my partner, Sam is Australian) to see a specialist here. Sam has had a consultation with Richard Kennedy (ENT surgeon) and Peter McNeill (neurosurgeon) as they would do the operation together (using the retrosigmoid approach). They seem to know their stuff but, of course, we would like to know as much as possible about them before they start poking around in his head.  So if anyone knows anything about them we loved to hear from you. Or if you had someone else in Oz do your surgery, or there is someone you would recommend, then we'd like to know about them too.

Thanks for taking the time to read this.

Margaret

Partner's AN diagnosed 10.6.10. 15mm right side. Still has good hearing. Some dizziness and tinnitus.

[leapyrtwins]

Laz - profile name Larry - lives in Sydney. 

Don't know if he could recommend someone or not, but you might want to send him a PM.

Jan

[Larry]

Hi Margaret,

I live in Sydney but was born and bred in Melbourne.

The best doc to see is Professor Andrew Kaye at Royal Melbourne. I also suggest that you see Dr Michael Dally at the Alfred. Dally is the guy to see about radiation treatment.

very quickly without wanting to bore everyone about my history. I had surgery many years ago and the growth returned. I had radiation treatment about a year and a bit ago.  I have definite preferences and am happy to share them. You can drop me a PM with your email address and I can share what  went through, costs and "pain".

some headlines you need to know. Surgery will set Sam back a minimum of 6 weeks before getting back to work - depending on what he does. If a desk job, then 6 weeks is minimum providing nothing goes wrong. With radiation - i had 5 treatments over 5 days and worked through the process - no down time. There are a lot of other considerations including my favourite one and thats watch and wait. Do absolutely nothing other than monitor the growth with regular MRI's.

cheers


Laz

[PaulW]

I am from Australia and was not happy with the surgical option in Australia.
The surgery is extremely difficult and it is something that should not be taken lightly.
The outcome is very dependant on the surgeons, and complications are potentially life threatening.
Statistics show that around 2% of people die from AN operations/complications
A close friend of ours lost all of her hearing, facial nerve was damaged, and she died two weeks after AN surgery from complications.
This is not an isolated case. Permanant Facial nerve damage, CSF Leaks, meningitis is not uncommon.

From my research it would appear that a good surgical team can produce fantastic results with minimal complications.
The House Ear Clinic in the US is certainly one of those centres of excellence.

Whether this level of expertise is available in Australia is questionable in my view.

There is a lot of research pointing to low dosage CK or GK treatments for SMALL AN's, providing similar results to surgery, without the level of complications and deaths.
Your partners tumour is small.

I was diagnosed with a 10mm x 5mm Acoustic Neuroma on 4th July 2010 after experiencing sudden partial hearing loss.
I had Cyberknife treatment in Munich on the 27th July 2010.
So far its like nothing has happenned. Got a bit dizzy for a few days, that was it. Was back typing emails and making phone calls a few hours after CK and have not looked back.
Flew back to Australia the next day.
No side effects or any changes so far.

There is no Cyberknife Machine in Australia.
GammaKnife was turned on 10 days ago at Macquarie University in Sydney.
Gammaknife is not covered by Medicare or your Health fund and costs $30,000 in Australia
Some older Linac and Radiotherapy machines are available but lack the accuracy required for the best outcome for a small Acoustic Neuroma in Australia.

Please do as much research as possible. Ultimately you must be comfortable with whatever decision you make.
I was not comfortable with the solutions being offerred to me, the timeframes it took to get anything done, nor the risk to my quality of life, to accept surgery, or older radiotherapy equipment within Australia.

[kiwi]

Wow

Glad I had my large tumour removed in NZ.....Aussie sounds so bleak! 

[lamplight]

I've already PMed Margaret about my experience and possible options. I can only speak from my own surgical experience and from a handful of people I've spoken to here in Adelaide, Australia.

Just want to reassure people in Australia who may not have the option of international treatment (or who are not suitable for radiation options) that it is not quite as bleak as it sounds. Do to tumour size and my age, radiation was not an option.

I had a 4cm tumour removed seven weeks ago, with only minor facial weakness which has just about already returned to normal. Yes, I lost the hearing in my right ear, but that was getting past useful level anyway. I know I was extremely lucky in not having balance issues and the headaches only lasting a week - no one can guarantee the level of success, but good results do happen.

In the lead up to my surgery, I spoke to a representatiive of a local AN group, who said that unfortunately the few post-surgical members available to speak to were the ones who do have ongoing issues. Whereas all the ones who make contact before surgery, but recover fine are never heard from again as they have no need for ongoing support. This was actually reassuring - that most had a good recovery!

I'm quite happy to admit that the trepidation and anxiety leading up to the surgery was terrible - probably worse than the actual recovery. I can't make the decision for anybody else, but I just don't want people who don't have options (due to their financial situation for example), to freak out. The beauty of Australia is that surgeons with great reputations do this type of surgery in the public system as well as the private. As Paul says, do your research.

[Larry]

Paul,

I have to chime in here and woulddisagree with your generalist statements. I don't know wht research you have done but it doesn't sound like you have covered all the bases required.

Firstly, you should never quote general stats of mortality rates unless you know the exact reason for death. I'll come back to the surgical options in a minute. I had radiation treatment performed 18 months ago at prince of Wales in Sydney and yes it is an old Linac machine but it has bee fully maintained and has the latest software but most importantly it has a group of fantastic technicians. These guys are the most important because it is their skill that ends up defining the accuracy of the x rays beamed to the AN. As for Cyber or gamma knife machines - are they better - thats arguable.

Anyway, the two most important statistics i asked my oncologist was.

1. What is the success rate of YOUR patients re putting a hold on AN growth post treatment and
2. How many (%) of YOUR patients have had severe side effects like facial paralysis etc following your treatment.

The response from professor Smee was 100% to Q1 and 0% for Q2. I wasn't interested in industry stats. General Statistics are irrelevant, focus on the treauing physicians stats. That applies to surgeons as well.

Now back to surgery. yes, House in the U.S has a great reputation but it comes at a cost - probably $100k for foreigners.  As to skill leels, you won't go past Pofs Fagan and Flannagan in Sydney or Prof Kaye
in melbourne. i suggest that you ask what their stats are  before having a go a them.
Oh by the way, if you explore thiswebsite, you will find that there appears to be a highr incidence of facial paral;ysis for those having Trans Lab surgery, a higher degree of headaches and post op issues from middle fossa and retrisgnoid. They are not official stats but observations. facial paralyiss can be a response to where the tumor is at on the facil nerve rather than the skill of the surgeon. However, the skill factor is a very important one.

Please don't bag our local expertise until you have properly conducted your research. I'm not defending the medicos for one minute, I'm just saying - don't make generalist accusations.


Laz