Author Topic: Retrosigmoid or translab surgery Australia  (Read 3572 times)

Somi

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Retrosigmoid or translab surgery Australia
« on: August 30, 2020, 06:06:50 pm »
Hi everyone,im new in this page and I don’t know how to start.I’m 38 years old and living Adelaide in Australia.
My daughter was born 6 months ago,I have had a bad headache for two consecutive nights after birth that’s why the doctors decided to do a MRI and it turned out that I have acoustic neuroma on left side.the tumour size is 28mm*22mm*18mm.
It’s been a huge shock to me. I did not know if I should be happy for the birth of my first child, a cute girl,or be sad for have a tumor in my head.and also with no family around it’s the worst thing that ever happened to me...
After that I searched the internet so much and read a lot of bitter and sad news that it made me very anxious and stressed.
Any way,after 6 months I did a new MRI which shows that the tumor has not changed.thats why I’m thinking to wait for 6 more months to do new MRI and keep monitoring that my daughter will grow up more and also the borders will be open and I can apply for a visa for my mother to come and look after my baby...
I am currently researching which surgery is best for this operation.I had consulted with many doctors
dr Stephen santoreneos in Royal Adelaide hospital who’s neurosurgeon and advice me to do retrosigmoid surgery and At the moment I’m in waiting list for surgery but I’m not sure if I do or not.
Prof Paul fagan in Sydney who’s ENT surgeon and advise me translab surgery.he is retired now and not doing any surgery but he recommended dr Nigel Biggs (ENT surgeon) who’s trained by prof.
I really get confused and don’t know what to do.its like I don’t have a power to think and decide...
I'm very scared and the thought that the facial nerve might be damaged drives me crazy...
Friends, based on your experiences, which surgery is better? What do you think I should do?
And also All friends living in Australia, does anyone know of an experienced surgeon who can introduce me?
Thanks
« Last Edit: September 15, 2020, 05:58:59 pm by Somi »
17/02/2020 Diagnosed 28*22*18
03/08/2020 Second MRI,no change in tumour
12/11/2020 done surgery and reMoved all tumour
20% hearing saved,facial nerve saved,minor weakness on left side which is not visible

Nerodia

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Re: Retrosigmoid or translab surgery
« Reply #1 on: September 07, 2020, 10:24:02 am »
I'm afraid I don't have any advice for you.

I have just been diagnosed and am trying to determine my best option as well. Congratulations on your baby. I'd say as long as your doctor agrees, it might be better to wait until your mom can come help.

Greece Lover

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Re: Retrosigmoid or translab surgery
« Reply #2 on: September 08, 2020, 07:12:30 am »
Everything I've learned about these tumors would suggest that you're probably OK waiting.  Sorry you have to go through this. As you probably know, retrosig would probably give you some chance of saving your hearing (maybe 50/50?) but translab is a surgical approach with overall better outcomes, but guarantees you'll lose your hearing.  One of the weird things about these tumors is that we have these choices to make.
Congratulations on the baby, and good luck! You can get through this. We all do, and life can be great on the other side of treatment.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

golfguy49

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Re: Retrosigmoid or translab surgery
« Reply #3 on: September 10, 2020, 01:33:57 pm »
You have a pretty large tumor.  I had surgery back in January (retrolab) and I lost about 90% of my hearing in that ear, I still have tinnitus, and my balance is marginal.  At that time, my tumor was probably half the size of yours and 3 surgeons I consulted said I was borderline for any method other than translab.  The other thing I was concerned about with retrosigmoid was lingering headaches after surgery - it seems fairly common, they think due to dust from drilling during surgery which apparently is more like to leave some residual dust with the retrosigmoid method.  I did not want to be concerned with a lifetime of headaches, so I went retrolab and I came out with the result I kind of expected (now 7.5 months later).  Some days are better than others.  Getting a good night's sleep is critical to having a good day.

Good luck.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

Somi

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Re: Retrosigmoid or translab surgery
« Reply #4 on: September 15, 2020, 05:57:08 pm »
Thank you all for your replies ❤️
Actually I had visited dr Michael Schultz in Adelaide and he had advised me to do retrosigmoid and same time another surgeon,dr Nigel Biggs in Sydney,he had advised me to do translab.
That’s why I really get confused and I’m not able to make a decision.
17/02/2020 Diagnosed 28*22*18
03/08/2020 Second MRI,no change in tumour
12/11/2020 done surgery and reMoved all tumour
20% hearing saved,facial nerve saved,minor weakness on left side which is not visible

Somi

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Re: Retrosigmoid or translab surgery Australia
« Reply #5 on: November 14, 2020, 01:56:53 pm »
Hello everyone, I wanted to give some new information and that I finally had surgery.
Considering that I had consulted with many information and that I finally had surgery doctors and got different opinions, but in the end, after consulting with a good and neutral surgeon in another country, I decided to have retrosigoide surgery at Royal Adelaide Hospital.
The operation was completely successful and the whole tumor was removed.(28*22*17)
Dr. Stephen Santoreneos  and his team performed an operation that almost completely saved the facial nerve and 20% of the auditory nerve.
Today is the third day of my surgery and I am generally well and I will probably be discharged today or tomorrow
I just want to tell all my friends who unfortunately have this problem and have not had surgery yet and are enduring a lot of stress like me, that you can only hope and try to do your part, which is researching and finding a good surgeon, and God  It helps the rest of the way.
Be strong and thank you very much to all those who shared their opinions with me
17/02/2020 Diagnosed 28*22*18
03/08/2020 Second MRI,no change in tumour
12/11/2020 done surgery and reMoved all tumour
20% hearing saved,facial nerve saved,minor weakness on left side which is not visible

MarlaB

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Re: Retrosigmoid or translab surgery Australia
« Reply #6 on: November 15, 2020, 05:50:35 pm »
I am so glad it went well!! Now rest, recover and stay well!!

Marla B.

Somi

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Re: Retrosigmoid or translab surgery Australia
« Reply #7 on: November 16, 2020, 03:24:33 am »
Thank you very much dear Maria
Exactly I am just looking forward to the day when I can easily hug and kiss my daughter and return to normal life as soon as possible.Thanks
17/02/2020 Diagnosed 28*22*18
03/08/2020 Second MRI,no change in tumour
12/11/2020 done surgery and reMoved all tumour
20% hearing saved,facial nerve saved,minor weakness on left side which is not visible

Jordybutt

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Re: Retrosigmoid or translab surgery Australia
« Reply #8 on: November 02, 2022, 09:07:13 pm »
Hi,
I am also living in Adelaide Australia and have recently been diagnosed with a large tumour on the right side. I am waiting for an appointment with Dr Santosh Poonnoose at Calvary to find out more information about the size and recommendations. My ENT has suggested urgent removal. Sort of scared.
Diagnosed 3cm AN Right Side 31/10/2022
Retrosigmoid Approach 04/01/2023
13% Remaining

donjehle

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Re: Retrosigmoid or translab surgery Australia
« Reply #9 on: November 05, 2022, 01:32:52 pm »
Thank you for posting in the forums, Jordybutt.

I think almost all of us have experienced the fear and anxiety of being told that we have a brain tumor.  So, you have come to the right place with people who understand.

While we have a lot of similarities in our journeys, there are significant differences, too.  What works for one person might not always work for someone else.

But this diagnosis, as bad as it is, does not typically kill us.  It creates challenges for most of us, some more than others.  But the good news is that most of us are able to continue with life (perhaps with some new adaptations) and are able to appreciate living, maybe even appreciate life more than we did before.  I just want to encourage you that, as scary as it is, you will be okay.

Best wishes on your journey!
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.

Jordybutt

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Re: Retrosigmoid or translab surgery Australia
« Reply #10 on: November 05, 2022, 10:27:17 pm »
Thank you very much for your words of encouragement donjehle.
I’m not sure what else to say yet as I’m still waiting for my consult which is tomorrow. I will find out more then and see what the situation really is looking like. I can’t wait to not be so tired anymore.
Diagnosed 3cm AN Right Side 31/10/2022
Retrosigmoid Approach 04/01/2023
13% Remaining