Australian - newly diagnosed and wanting to talk to others

[Lu Lu]

Hello fellow ANers

I have just been diagnosed with a small AN. Have no symptoms aside from tinitis in ear - but I have many symptoms on the other side of my face (which is how my AN was picked up after an MRI).

Have been advised to explore radiosurgery as a treatment option - and I just want to know if anyone "out there" who can allay some of my concerns - and talk to me about their experience of a translab surgical approach and anyone else who has had radiosurgery ?

have you come out with facial nerve fuction in tact, balance OK, and all senses functioning well.

I have a 1.7cm AN...heariing is still working reasonably well. I am 52 and professional. Need to continue to work after treatment.

Cheers
Lu Lu

[sgerrard]

Hi Lu Lu,

I had radiation a year ago - Cyberknife at Stanford. My AN was under 1 cm, but I think the results are similar for one in your size range. My hearing, which had already declined to about half normal, has stayed stable, and I did not have any facial issues. My balance is a little wobbly on turning corners, but no dizziness or vertigo. So far, the treatment has worked out well for me.

If you have an particular concerns about radiation, I would be happy to comment on them if I can.

Welcome to the forum. Is it summer down there? 

Steve

[leapyrtwins]

Hi, Lulu -

I'm 47, had retrosigmoid 16 months ago, and am also a professional who has to work - I have myself and two kids to support, at least until they're old enough to support me

My facial nerve function is intact, my balance is fine, and all my senses function perfectly with the exception of my hearing.

My surgery left me SSD (single-sided deaf), but if you are considering translab you'll most likely be facing that same issue.

I have a BAHA which does wonders for the SSD.

Welcome, and feel free to ask any questions you'd like 

Jan

[kimbo]

Hi Lu Lu

I am Aussie and I am newly diagnosed also, (read signature) with minimal symptoms.  I live in NSW and I am in W&W mode.  Radiosurgery was not recommended to me and at this stage I am just keeping on until I move onto the next stage.  I am under the care of a specialist in Sydney and am going to join the Victorian ANA as it appears quite active, offers support with lots of infomation and sends a monthly newsletter.

Kimbo

[HeadCase2]

Hi Lu Lu,
  Sorry to hear about your AN diagnosis, but welcome to the AN forum. 
  If you're trying to save hearing, translab normally sacrifices hearing on the AN side.  The other two surgical approaches, retrosigmoid/sub-occipital and middel fossa can save hearing.  It would not be a given that hearing would be saved, the larger the AN the less likely that hearing would not be affected.
  We have a few Australians on the site who may have good knowledge of treatment teams down under.  Send a personal note to Laz (user name larry).
Regards,
  Rob

[Omaschwannoma]

LuLu,

I had 1.5cm surgically removed with retrosigmoid approach to save my hearing.  Before surgery my face was showing signs of stress to the facial nerve with drooling, biting inside and lip, eye twitching, having difficulty holding a smile (it ached to do this) so I knew my facial was being compromised and chose to stop the "wait and watch" recommendation.  My facial nerve came out just fine only problem is eye twitching (occasionally) and teensy drool in corner of mouth. 

After my second surgery (transcanal labyrinthectomy) doctor said my facial nerve is prolapsed, but he did a great job once again and saved my nerve.  Only me and a doctor can notice a slight palsy. 

The most recent Symposium had doctors agreeing the larger the tumor the more difficult it becomes at saving the facial nerve.  Also, the doctor doesn't know if the tumor is more sticky than others so removing it from the facial nerve can be a challenge here even if tumor is small.  Given the difficulties patients encounter with facial paralysis, it doesn't make any sense to me to wait for symptoms or take a chance with "wait and watch" that the tumor isn't going to be a "sticky" one.  You can watch closely for symptoms of your facial nerve becoming compromised, but don't let the tumor become greater than 2cm. 

This is my opinion and not a recommendation. 

[mk]

Hi LuLu and welcome,

You found the right place to share experiences, and there are so many distinct stories here.

I had GK back in April. I  have been very fortunate, as I haven't had any issues afte treatment. I didn't miss a day of work (other than the week off that I had originally requested, although I didn't even need that) and have been very busy taking care of my very active 6 and 2 year olds.
That being said, there has been a recent postie who has had major issues post-GK, with constant vomiting, nausea etc. Shows that everyone responds differently, and that there are no guarantees with any type of treatment.
The important thing is to obtain as many opinons as possible, do your research and decide what type of treatment you feel more confortable with.

Marianna

[Sue]

Hi LuLu
Welcome to our little corner of the world.  Sorry you had to join us, but glad you found us.

I had radiosurgery, and my outcome is pretty good, but I'd already lost most of my hearing and I have facial numbness because the facial nerve is not happy.  GK did not make that any better or any worse, as far as I can tell.  Everything is pretty much the same, more or less.

I never had severe balance issues, so other than some minor problems, that hasn't been a big concern for me either.

Hopefully your treatment and recovery will be smooth sailing! 

Hang in there.  We have several lovely people from Down Under on here. 

Sue in Vancouver WA USA

[wendysig]

HI Lulu,
Welcome to this forum.  As others have said, I'm sorry to know you have an ANt, but am glad you found us.    This group is a wonderful source of information, compassion, support and hilarity.  Please feel free to ask any and all questions and vent when you need to.  I am 55, had translab 10 weeks ago and am doing geat.  My facial nerve is fine, I had a minor problem with the eye on my AN side but it resolved within the first month.  My only problem is my balance and even that is not really terrible, more of an invonvenience.  I am currently walking with a cane, but hope to soon give it up. I had been going vor vestibular rehabilitation (retrains your brain to take balance function information from your good ear)  I get a little wonky headed (slightly disorientted, somewhat more  off balance, and sometimes mildly nauseous) when I am in a crowd -- no extreme dizziness or vertigo.  Of course, since I had translab I lost my hearing in  my AN ear.  I am planning to have surgery for a BAHA (bone anchored hearing aid) implant in January and will hopefully be hearing somewhere close to normal by sometime in April.   All in all, I feel I have had a wonderful outcome and I am definitely sure this was the right choice for me.   Only you can decide which form of treatment is right for you, everyone makes their decisions on treatment for their own reasons.  My advice is research ANs and their treatment, have several consultations with both radiation oncologists and neurotolotgists and make an informed decision.  I wish you luck in your research and decision making process.  We will be here to support you in whatever ways we can.

Best wishes,
Wendy

[Syl]

Welcome, Lu Lu

I had retrosig surgery in June. Originally, I had chosen translab because it didn't look like chances of saving my hearing were in my favor. But, I changed my mind one week before surgery. Both my facial and hearing nerves were spared because I was lucky to have a tumor that peeled right off the nerve, minimizing damage to my face and hearing.

If you are looking to save your hearing with surgery, please understand that the tranlab approach sacrifices your hearing in your AN ear. The surgical approaches that are attempts at saving your hearing are retrosigmoid and middle fossa, but they do generally pose a higher risk to the facial nerve.

After two months of medical leave, I returned to work. It's been just under 4 months since my surgery, and life is getting back to normal.

Syl

[MAlegant]

Hi Lulu and welcome,
Look at my signature to see the details.  I had retrosigmoid (to save hearing, which they did!) and at 3 months post op am back to work full-time with just a few issues that don't stop me from living my life.
Good luck to you, please post again.
Best,
Marci

[Lu Lu]

Thank you all for sharing your stories with me ... it is a great comfort.

The amazing thing is I am showing very few symptoms on the AN side apart from fullness in the ear and tinitis. I did have 5 days of vomiting a year ago which we have now identified as being caused from the tumour...

I guess each one of us is different... which somehow makes the choice even harder to make. Has anyone been concerend or read any reports on Radiosurgery causing other tumours in the area receiving  radiation ??

[msmaggie]

Hi Ren,

I was told by seveal drs. that radiosurgery will cause a decrease in hearing w/in 3-5 years.  Since the surgery can cause an immediate decrease in hearing, that may or may not be something you would worry about.  The people who have had radiosurgery seem to be really happy w/their choice, as do the people who chose surgery.  It is all up to you and the recommendation of your dr.  And deciding is usually the hardest part!  Do a lot of reasearch.  Check out the cyberkife forum.  Lots of good info there.

Good luck!

Maggie

[msmaggie]

Sorry Lu Lu !  I addressed the post to you, but put Ren's name.. Must be brain damage!  LOL

Maggie

[ppearl214]

Hi Ren,

I was told by seveal drs. that radiosurgery will cause a decrease in hearing w/in 3-5 years.  Since the surgery can cause an immediate decrease in hearing, that may or may not be something you would worry about.  The people who have had radiosurgery seem to be really happy w/their choice, as do the people who chose surgery.  It is all up to you and the recommendation of your dr.  And deciding is usually the hardest part!  Do a lot of reasearch.  Check out the cyberkife forum.  Lots of good info there.

Good luck!

Maggie

hey Maggie! Good to see you! Thanks for sharing this!  I'm not sure which dr's you are noting that are saying "that radiosurgery will cause a decrease in hearing w/in 3-5 years".   Yes, there are many that have endured hearing loss post-radio treatments, but there are many (such as myself) that have maintained or had slight diminishment of hearing in their AN ears.  I don't have the stats on it (basically, "fractionating" a radio-treatment is what is noted to help with hearing preservation) and your suggestion of the CK Patient Support board (note: new web address:  www.cyberknife.com) is a good one where Drs Medbery and Spunberg may have the exact stats of hearing preservation.

Again, great to see you!
Phyl