Author Topic: Surgeon reviews?  (Read 5190 times)

joanna_an

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Surgeon reviews?
« on: October 22, 2013, 01:33:20 am »
Hi all,

I live in Melbourne, Australia and I have just been diagnosed with an AN size 18 x 16 x 13mm..
I was recommended to have the surgery done by Mr. Robert Briggs, Melbourne. I haven't met with him yet, but I was wondering if anyone knows of any reviews. Just can't find anything about his history or success rate for his AN surgeries.

Please help,
Jo
31 years old female
Left AN 18x16x13mm diagnosed on the 17th of October 2013
21mm on the 19th of February 2014
Hearing loss, tinnitus
SRT 12th March 2014

joanna_an

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Re: Surgeon reviews?
« Reply #1 on: October 22, 2013, 06:00:59 am »

I realise  that many would not know of him..
So I will just ask can anyone recommend me a doctor for acoustic neuroma surgery in Australia. Any success stories? I am really scared of facial paralysis and of course, death...

All I seem to read on this site is just problems caused by the surgery and no success stories. I am just 31 years old.

Please help.
31 years old female
Left AN 18x16x13mm diagnosed on the 17th of October 2013
21mm on the 19th of February 2014
Hearing loss, tinnitus
SRT 12th March 2014

Cheryl R

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Re: Surgeon reviews?
« Reply #2 on: October 22, 2013, 08:17:40 am »
Suzana, There are many success stories here.       There are many who do well and on here a short time and then back to their usual lives.      This does not mean we don't have some adjustment to our lives.      Losing the hearing on the one side is probably most frequent.      There will be fatigue issues for a time.
The balance issue will vary as most do recover from that but still may have some if walking in the dark or when tired.      How the body compensates for this can vary.      One has to work at this by keeping active when you can post op.          The facial issue is temporary in many cases.      The tumor location and what it has done to the facial nerve can play a part.     Many do not even have any paralysis or is just some temporary weakness.         That is what is hard with an AN to not be able to know ahead of treatment how you may be affected.       You do not have a large tumor which can play a part in how it has affected the nerves.
It is very scary to hear one has an AN.       Finding a dr who treats many ANs is important.        We can be of help here for support for you.         There is life after AN treatment.                             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: Surgeon reviews?
« Reply #3 on: October 22, 2013, 01:29:13 pm »
Hi, Joanna ~

I do not have information on Dr. Briggs but I would suggest checking with the Australian medical licensing authority for information.  However, you will have to consult with the doctor one-on-one to ask him about his success rate with AN surgery.  If he proves evasive or his experience is limited, I would keep looking.  You could also check with the Australia Acoustic Neuroma Association.  http://users.tpg.com.au/users/bcrowe/   Although their website is not too informative, you may be able to contact them for information regarding doctors with extensive experience treating AN patients.

I'm sorry if the U.S. ANA website discussion forums gives you the impression that it is all about sad outcomes from AN surgery.  That is certainly not always the case.  It wasn't for me - and I was diagnosed with a 4.5 cm tumor that required both surgery and radiation.  I did very well and so have many other AN patients all over the world.

One has to understand that the ANA website and these forums are specifically designed to inform, advise and support AN patients.  As Nurse Cheryl stated in her post, those AN surgery patients that do well tend to stop visiting and posting because the site has little appeal for them at that point and most just want to put the experience behind them, as it were.  A few of us remain to encourage newly diagnosed AN patients (like you) and 'pay it forward' as moderators and/or frequent contributors (such as Cheryl).  However, we all want to help and support other AN patients in whatever manner we can.  I trust the website and forums can be of assistance to you as you begin this journey that none of us ever wanted to take.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

joanna_an

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Re: Surgeon reviews?
« Reply #4 on: October 22, 2013, 05:43:36 pm »
Thank you all very much for replying.. You offer great support as it is really hard to find someone in my situation, given that this is a rare problem..

There is a acoustic neuroma meeting in Melb on November 16th.. Hopefully I will get some information from there as well.

I will keep in touch here and let you know what I decide..
31 years old female
Left AN 18x16x13mm diagnosed on the 17th of October 2013
21mm on the 19th of February 2014
Hearing loss, tinnitus
SRT 12th March 2014

Crazycat

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Re: Surgeon reviews?
« Reply #5 on: October 24, 2013, 05:34:27 pm »
Joanna,

 With a growth of the size of 18 x 16 x 13mm, you would be a strong candidate for CyberKnife or GammaKnife. Keep this in mind when consulting with your doctors.

Best wishes....
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

PaulW

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Re: Surgeon reviews?
« Reply #6 on: October 25, 2013, 05:45:31 am »
Professor Robert Briggs is on the medical advisory board for the Australian acoustic neuroma association and is highly regarded..
Australia unfortunately is still waiting for it first Cyberknife to be turned on.. But should be available soon in Perth. Gamma knife is only available in Sydney.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

SDTom

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Re: Surgeon reviews?
« Reply #7 on: October 26, 2013, 04:09:19 pm »
Hi Joanna,
I think part of what you are seeing is that people that have more problems are posting here more often. If people have fewer problems they may be less likely to post. Many people go on without a lot of interruption. The only advice I have for you is make sure you are comfortable with your Dr. and with the procedure. Don't worry about anyone else but yourself.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

joanna_an

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Re: Surgeon reviews?
« Reply #8 on: October 26, 2013, 08:57:27 pm »
Yes, I believe people with success stories just want to move on and forget about it...
I am looking into Gamma Knife as well and will meet with a few doctors early November to ask for advise and stats.
It's wrong tho that I had to research into radiation. My specialist did not even mention it to me and when I asked, he just said "radiation will do nothing for you and it will do more damage than surgery".
I understand that I am fairly young and doctors are wondering about life expectancy when it comes to radiation, but I find it very ironic to talk with someone that has a brain tumor at 31 about life expectancy... And I probably have it since 26, who knows? 
31 years old female
Left AN 18x16x13mm diagnosed on the 17th of October 2013
21mm on the 19th of February 2014
Hearing loss, tinnitus
SRT 12th March 2014

Crazycat

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Re: Surgeon reviews?
« Reply #9 on: October 27, 2013, 01:06:43 am »
"radiation will do nothing for you and it will do more damage than surgery".

Interesting remark. There are a number of people on this forum that have received such treatment whom would attest or claim otherwise.



5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.