Author Topic: Newly Diagnosed AN, 23yo Female South Australia  (Read 239 times)

Jordybutt

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Newly Diagnosed AN, 23yo Female South Australia
« on: November 07, 2022, 12:07:14 am »
Hi there
Putting this post out there for anyone who is new to the process as well, like me. Bonus points if you live in my state. I guess, I’m also just using this as a bit of a journal to sort of let this out to those who may understand.
Last week the ENT told me the results from my recent MRI with contrast showed a large acoustic neuroma on the right side. Which explains my hearing loss, balance issues, and facial numbness.
Today I had my first consult with my neurosurgeon who was really great. I feel very confident in him.

Tumour information:
The tumour is 3cm. It is pushing against the brain stem, strangling the vestibular cochlear (hearing) nerve, and starting to press the facial nerve. It will need surgical removal via retromastoid/retrosigmoid approach.
The neurosurgeon I saw today will be the same one who does the surgery.
I will have the surgery in probably January.
There are some risks to the surgery 90% chance hearing damage, and 30-40% chance facial nerve damage. There are ways to monitor the facial nerve during the surgery. As for hearing, it’s hard to say. Likely to leave smaller parts of tumour so as to preserve the nerves. And then regularly monitor the remaining pieces. As it is benign, there is no risk of it spreading. It will be a long surgery 6-10 hours, I’ll be in hospital for 3-5 days following and take 6 weeks recovery at home. There are other classic risks as for any surgery such as infection, bleeding, fluid.
In the following week or so I will be confirming dates and planning logistics for the surgery.

I am the most concerned about facial paralysis, being a young woman, this would be devastating for me. I also hope that I am able to return to my regular exercise (which keeps me sane) within a good time and not experience too much hassle around this.  I guess I really just want this tumour gone and for my life to go back to normal.

I am only young and I was never expecting something like this. I am hopeful for a good recovery and for this all to be behind me.

If anyone has tips, suggestions, or questions, I am happy to take them.

Please I also ask any of you who are willing to put me in your prayers, as I really need strength and temperance to manage this process.

I was also going to upload a photo I took of the MRI result which shows the tumour clearly but I can’t work out how, if anyone could let me know I will attach it.


Jordy
Diagnosed 3cm AN Right Side 31/10/2022

donjehle

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Re: Newly Diagnosed AN, 23yo Female South Australia
« Reply #1 on: November 07, 2022, 10:20:22 am »
Hi Jordy!

First of all, let me say that I am glad to include you in my prayers.  While I have not been instantaneously healed from my hearing loss, I have received a lot of benefit from others praying for me.  You may be amazed at the courage and strength you receive as we pray for you.

Secondly, as you discovered, acoustic neuromas can strike anyone at any age.  While it is often older people who "join the club" (as they say), there are a number of young people who come to the forums seeking hope and encouragement.  That is why your post is so important.  Other young men and young women will read what you say here as they are given the same bad news as you were.  So, I hope that you will continue to post and share your continued journey.  For everyone who posts a response, there are a few hundred people who will read what you say, but never post anything back.  So, never think that your story is not impacting someone else's life.

It is very tragic that you are having to go through this at your age.  However, there are women (and men) who have posted here that having an acoustic neuroma ended up being a blessing in their lives rather than a curse.  It might be difficult for you to see that now so soon after receiving the news from your MRI.  But, if you look hard enough, you might be able to discern the silver linings in the clouds.

The best news is that you are still alive, and it is very rare that someone would die from an acoustic neuroma (unless left untreated).  We can rejoice that we do not have a different kind of brain tumor which could be fatal.  Secondly, this diagnosis can make us pause and reflect upon what is really important in life.  It can also help us to appreciate the blessings we DO have.  I did not REALLY appreciate the ability to hear until I lost my hearing in my AN ear.  Now, I really value the sounds I can hear from my good ear.  I did not appreciate the ability to walk until my balance was thrown off, and I kept falling and needed a cane to walk.  Fortunately, with vestibular therapy, I was able to walk again.  But it is not something I take for granted today.  And I learned how important vision is in balance as well as our sense of touch.  Life takes on a new meaning after an acoustic neuroma diagnosis.

I realize how important your facial nerves are and how you don't want facial paralysis, especially as a young woman.  And yet, there are many women of varying ages on these forums who have lost their ability to fully control their facial movements.  I truly admire them and their courage to press on from day to day despite what they have experienced.  And a few have shared with me how they learned what was really important was who they were as a person and not simply their outward appearance.  Too often people place way too much importance on our outward appearance instead of who people are in the inside.

I say all of this to say, Jordy, that we care for you and want the very best for you.  Some of us will be praying that your surgery goes very well.  But even beyond the surgery, my hope is that you will become the best person you can be through it all.

We are behind you and are rooting for you!
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: Newly Diagnosed AN, 23yo Female South Australia
« Reply #2 on: November 11, 2022, 02:01:55 am »
Hi Jordy!

First of all, let me say that I am glad to include you in my prayers.  While I have not been instantaneously healed from my hearing loss, I have received a lot of benefit from others praying for me.  You may be amazed at the courage and strength you receive as we pray for you.

Secondly, as you discovered, acoustic neuromas can strike anyone at any age.  While it is often older people who "join the club" (as they say), there are a number of young people who come to the forums seeking hope and encouragement.  That is why your post is so important.  Other young men and young women will read what you say here as they are given the same bad news as you were.  So, I hope that you will continue to post and share your continued journey.  For everyone who posts a response, there are a few hundred people who will read what you say, but never post anything back.  So, never think that your story is not impacting someone else's life.

It is very tragic that you are having to go through this at your age.  However, there are women (and men) who have posted here that having an acoustic neuroma ended up being a blessing in their lives rather than a curse.  It might be difficult for you to see that now so soon after receiving the news from your MRI.  But, if you look hard enough, you might be able to discern the silver linings in the clouds.

The best news is that you are still alive, and it is very rare that someone would die from an acoustic neuroma (unless left untreated).  We can rejoice that we do not have a different kind of brain tumor which could be fatal.  Secondly, this diagnosis can make us pause and reflect upon what is really important in life.  It can also help us to appreciate the blessings we DO have.  I did not REALLY appreciate the ability to hear until I lost my hearing in my AN ear.  Now, I really value the sounds I can hear from my good ear.  I did not appreciate the ability to walk until my balance was thrown off, and I kept falling and needed a cane to walk.  Fortunately, with vestibular therapy, I was able to walk again.  But it is not something I take for granted today.  And I learned how important vision is in balance as well as our sense of touch.  Life takes on a new meaning after an acoustic neuroma diagnosis.

I realize how important your facial nerves are and how you don't want facial paralysis, especially as a young woman.  And yet, there are many women of varying ages on these forums who have lost their ability to fully control their facial movements.  I truly admire them and their courage to press on from day to day despite what they have experienced.  And a few have shared with me how they learned what was really important was who they were as a person and not simply their outward appearance.  Too often people place way too much importance on our outward appearance instead of who people are in the inside.

I say all of this to say, Jordy, that we care for you and want the very best for you.  Some of us will be praying that your surgery goes very well.  But even beyond the surgery, my hope is that you will become the best person you can be through it all.

We are behind you and are rooting for you!
Don
Don,
I am not sure how to “reply” to your comment specifically, so I hope I have done this right.  ;D

Wow, firstly I must say that you really have such an eloquent way of writing and it has conveyed your kindness and compassion so wonderfully. Thank you from the bottom of my heart for your support to an anonymous stranger in need such as myself.

I also thank you for your prayers and well wishes, I really do feel spiritually strengthened just knowing that you and others have me in your prayers whilst I go through this challenging time. I have felt some clearance in the past few days, from my anxiety and depression about this, and I do think it has been because of Jesus. I have prayed and prayed for strength and so here I am. Feeling a bit better.

I understand what you’re saying about allowing the AN to change my perspective and count my blessings because of it. Already I have experienced some adjustments to my values, priorities, and way of thinking since this diagnosis just 2 weeks ago. I think in general this will be a valuable learning experience and it will make me more grateful and aware of the basic things in life, as I have started to already.

I do feel in my heart that everything will turn out okay. I just have some nerves still surrounding the surgery. I’ve never had any surgery ever before, so for my first surgery to be inside my skull, it’s quite intimidating.

Thank you so much again for your support. I will be posting progress on this forum and also an AN Australia page that I’ve found to be overwhelmingly supportive.


Hear from you soon,
Jordy

Diagnosed 3cm AN Right Side 31/10/2022

donjehle

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Re: Newly Diagnosed AN, 23yo Female South Australia
« Reply #3 on: November 12, 2022, 06:45:23 pm »
Hi Jordy!

It's natural to have some anxiety before any surgery, even if you have had many procedures before.  And that is especially true when you are allowing someone to treat your brain.  It's very scary!  So, that's very normal for you to feel the way you do.  And it's okay.

I'm looking forward to your future posts to see how the Lord has blessed you!

Best wishes!
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.

SP

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Re: Newly Diagnosed AN, 23yo Female South Australia
« Reply #4 on: November 22, 2022, 03:30:22 am »
Hi Jordy,

An AN is such a big health issue to deal with at all ages. I believe the human body has amazing capacity to heal and I'm thinking of you and wish and pray for the best of health outcomes for you.

all my positive energy to you,

Stella x

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)

 


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