Are there people in there 20/30's here with AN

[davebanninga]

Hi everyone,

Are there people on this board aged around 20-35 y.o  with a spontaneous AN.
I feel quite lonely at my age having this issue, i'm truly great-full for all of you sharing your experience and stories and i learn a lot from it its been a blessing finding this forum.

but i wonder if there is someone my age on this board.

I'm 29, and have a cystic AN sized 40mm i have yet to find someone my age and size, if there is any one out there contact me i would love to talk, i'm curious how you cope with things the average age is usually higher, also in my own circle of friends its usually their grandparents who have had a similar condition.

their experience is something i'm really grateful for, yet they are in a different stage of life dealing with other problems then a young adult might be dealing with, when it comes to friends and social life and work for instance.
i've also read treatment options differ with age, a young adult is more likely to be advised surgery.

Maybe there are people here that found out on a young age similar to mine, and are older now 40/50's how did your life change how did you go through young adulthood with this thing in your head.

What's the biggest size that came across this board, and if you had a big one how did you recover from surgery.

[donjehle]

You are correct, davbanninga, that the vast majority of AN patients are much older than you are.  However, there are those like yourself who post on the forums that they are in their twenties or thirties and were diagnosed with an acoustic neuroma.  Generally, the treatment plan for a young person could be different than that for those of us who are elderly.  That is something to speak to your specialist about.

A lot of the time, those who are younger will post their exact age (as you did), but some will do a general, "I'm in my twenties (or thirties)" post.  Let me share with you how to find those posts:

You have to go to the Home page of the forums (as the search will not work properly from this page).  Click on where it says, "Home" on the top left of this page.  Then on the right side will be a Search box.  Type in whatever you want to search for.  You can type in "twenties" for example, and it will list every post where someone used the word "twenties" in their post.  Some of those posts will have nothing to do with what you are looking for, so you will still have to scroll through them to make sure they are relevant.  You could even search for "29" just to see if there was anyone your same age.

Not all young people post on the forums.  Many more read what is posted, but never post anything themselves.  But, nonetheless, I have seen a number of young people over the last year who were in their twenties or thirties post messages about their experience here on the forum.  Searching for the different ages from 20-39 could be cumbersome, but you will discover that you are not alone.

I wish you all the best on this journey!
Don

[donjehle]

After I posted this, I went to the Home page and searched for "29", and the search results listed every "29" in the forums including dates that had the number 29 in them.  However, I did see a number of people who said they were 29 years old.  You might want to look at those posts and see what they had to say.

[davebanninga]

Thanks Don, i will try that!

[donjehle]

Hi davebanninga,

jordybutt is younger than you.  She is only 23.  But her story is like a lot of young people who are diagnosed with an acoustic neuroma.

Read her one post here:
https://www.anausa.org/smf/index.php?topic=25305.msg979783463#msg979783463

And then read her post today:
https://www.anausa.org/smf/index.php?topic=25334.0

She started out scared (liked the rest of us), but has really grown in her understanding of what needed to be done.  I think she is an inspiration to the rest of us!

[davebanninga]

Thanks for letting me know Don! much appreciated!

[Jill Marie]

Hi Dave,  I'm 65 and had a Facial Nerve Neuroma (Tumor) removed via translab 30 years ago.  My tumor was 1 x 0.5 x 0.5 cm.  I was told I had a large tumor.  Most of my hearing in my left ear was gone before surgery.  Jill

[bri-82]

Hi there. I was in my late 20s (2010-2011) when I was first diagnosed. At that time my tumor was over ~4.0 cm and also cystic. I visited with several experts and all said the same thing--when they find these tumors in young people they are typically very large. I saw three doctors for opinions: Washington Hospital Center, University of Maryland Medical Center, and Johns Hopkins. I've just turned 40. Two surgeries and two radiations--I just had a second radiation almost a year ago. Feeling lonely is totally expected and normal... and you will feel isolated from friends at times. I used to go running around my neighborhood at 2 am because I couldn't sleep from the anxiety. Your life may change, but that largely depends on the condition and what the doctors can do with you. If you'd like to talk more specifically please let me know. There are a few issues that I may be helpful with.

~BM

[donjehle]

Thanks, BM and Jill Marie, for sharing that!  It's very helpful for our community!

[Jordybutt]

Hi,

Someone shared your post with me as you’re also a young person with AN. I’ve seen you’ve responded to one of my other posts as well. I’m 23 and had retrosigmoid on 4th January for my 35mm. We found a CT from 2018 (I would have been 19 at the time) where the AN was present but only in the bone, so about the size of a pea. The rate of growth for this AN to be pea sized in 2018 to 35mm this year must have been fairly aggressive.

To be honest my only major concern was the hearing loss that I began noticing in May last year. As a young person, it was really difficult for me to cope with not being able to hold conversations in noisy settings (church, work, social events, etc).

It was only after the diagnosis that I also identified other symptoms that I had written off to “weird body things that just happen for no reason” such as balance issues where sometimes I’d stagger off to the AN side, needing subtitles to follow movies, and in the later stages brain fog, fatigue, and memory issues becoming the most troubling as they were severely impacting on my daily life.

From my understanding regarding tumour sizes, once the tumour surpasses 30mm or so, it is classified as large. Anything more than that is considered very large. I’m not sure of the largest I’ve found on this site but I do know it seems less common to me to find people with tumours that are considered large. I think this is because most people find the tumour/notice its effects before it gets to such a size. For some reason I barely noticed it and it was only at my behest that my doctor sent me to the ENT specialist who ordered the MRI which showed the AN.

My recovery from surgery is going really well. I’m on day 10 now, feeling really good. I’m happy to answer any questions you might have.

Cheers
Jordy