Newly diagnosed

[SPX600]

Hello All,

Newly diagnosed and have benefited by reading the content on this forum.

I was clued into something being wrong when at 35 years old, the hearing in my left ear became almost non-existent. I'd be laying in bed and if my right ear was against the pillow, the tv would basically be inaudible. I wrote it off as hearing loss due to noise exposure. I then started to get ringing in the ears. I also wrote that off as being associated with the noise exposure, and as part of the hearing loss. I've also, in the past, dealt with some mild balance issues, but those went away. Other symptoms that I had included pain behind one eye (left, same side as the AN), and headaches of varying intensity.

When I discussed these symptoms with my doctor, he immediately sent me to an ENT and also ordered a brain MRI, and the diagnosis came shortly thereafter. As odd as it may seem, I always knew I'd have a brain tumor at some point. I remember 5+ years ago having frequent headaches and telling a friend "my luck, it's probably a brain tumor!" Just somewhere in my gut, I knew this would happen. Strange, huh?

From my reading online, some of my symptoms (headache, and eye pain specifically) seem a bit unusual with AN. Has anyone else on this forum experienced such symptoms? I am curious if it's perhaps related to age of the AN, size of it, or??

As I wait for my surgery date, I'm surprisingly as peace with everything. I feel confident that I will be fine, and while this means the possible end of one career (airline pilot for American), I feel good that other doors will open and I'll be just fine through life.

[ColleenS]

Hi there! My story is very similar to yours - if I was laying on my good ear, I could not hear the alarm - even if I was awake. By the time I went to check on things I had 10-20% of my hearing left. So anyway, I also have occasional eye pain/pressure and twitching. Seems like something is in my eye, but behind my eye. I also have occasional double vision/foggy vision, but it is temporary.  I have had it checked out by my optometrist and all seems fine. So I guess it is just another one of those AN things that will go away when the tumor does 

[SPX600]

Thank you for taking the time to reply.

[djsunshine21]

I have had headaches too. And recently my eye has felt dry--just the one eye. You know it's frustrating to feel like you're crazy for experiencing these things and then realize you aren't!

[ANSydney]

Dry eye is certainly a potential symptom of AN.

[Patti]

I have frequent pain behind the eye.  The doctor (who i am in the process of leaving) has nothing to say about it.  I also have dry eye and no corneal sensation.  Sometimes the angle of sunlight causes a sharp pain.  Due for an MRI so I will see what's going on.

[Shah_jl]

Hello! I am 38 and was recently diagnosed with AN Dec 2016. I was just getting ready to make my first post, but figured I'd respond to you. My AN is 14 mm. I was diagnosed after having a MRI because of my frequent headaches. But they call it an incidental finding. They say that headaches aren't a symptom. Well I'd like for them to give me another reason.

[KeepSmiling]

It is good you are at peace. We wish you well with your procedure and recovery.

[SPX600]

Hello! I am 38 and was recently diagnosed with AN Dec 2016. I was just getting ready to make my first post, but figured I'd respond to you. My AN is 14 mm. I was diagnosed after having a MRI because of my frequent headaches. But they call it an incidental finding. They say that headaches aren't a symptom. Well I'd like for them to give me another reason.

Seems that a lot of AN patients have headaches, but doctors say it's unrelated. Guess that it doesn't much matter, anyhow.

[ReginaE]

Hello All,

Newly diagnosed and have benefited by reading the content on this forum.

I was clued into something being wrong when at 35 years old, the hearing in my left ear became almost non-existent. I'd be laying in bed and if my right ear was against the pillow, the tv would basically be inaudible. I wrote it off as hearing loss due to noise exposure. I then started to get ringing in the ears. I also wrote that off as being associated with the noise exposure, and as part of the hearing loss. I've also, in the past, dealt with some mild balance issues, but those went away. Other symptoms that I had included pain behind one eye (left, same side as the AN), and headaches of varying intensity.

When I discussed these symptoms with my doctor, he immediately sent me to an ENT and also ordered a brain MRI, and the diagnosis came shortly thereafter. As odd as it may seem, I always knew I'd have a brain tumor at some point. I remember 5+ years ago having frequent headaches and telling a friend "my luck, it's probably a brain tumor!" Just somewhere in my gut, I knew this would happen. Strange, huh?

From my reading online, some of my symptoms (headache, and eye pain specifically) seem a bit unusual with AN. Has anyone else on this forum experienced such symptoms? I am curious if it's perhaps related to age of the AN, size of it, or??

As I wait for my surgery date, I'm surprisingly as peace with everything. I feel confident that I will be fine, and while this means the possible end of one career (airline pilot for American), I feel good that other doors will open and I'll be just fine through life.

About  2 years ago, I had eye pain so bad in my left eye that at times it was blurry, I also felt like something was pushing on my eyeball from behind it .  I went to an eye specialist and explained my symptoms.  He gave me a lot of eye tests and came up with nothing to support the pain.  He had another doctor in his practice look at me.  She sent me for a cat scan.  The scan showed nothing behind the left eyeball.  Both doctors were baffled.  I told them that if I was stressed out the eye hurt more.  They told me to use eye drops to keep the eye moist as it was dry.   At this point I also had dizziness when I rolled over in bed on my left side.  My General Physician sent me for a MRI at which point the AN was discovered.  The AN was 1 CM.  I had another eye appointment after my AN was diagonised and when I told my eye doc about the AN and it was on the left side, he had a strange look on his face.  To this day, my eye still hurts and to look at me, my left eye looks bigger than the right.   Seems like all my issues are on my left side and I feel are directly related to the AN. 

[Willbur]

Size of AN?

[ReginaE]

Hi Willbur,

My AN is 9.4 x 5.7 x 5.0 mm on the left side. 

[Abetpds]

Hello, Just found this post.  I too am new and was diagnosed with a 2.7cm AN on my left side on 3/28/2017.  Essentially no hearing in the left ear.  Scheduled to see a neurosurgeon on April 21 2017. The ENT said that it is getting close to the brain stem but since I am 68 years old, the surgeon needs to decide what to do. Is there anyone else in that age bracket and what has your experience been with surgery for this large a tumor?  All the research I've done  does not recommend radiation for this large a tumor.  Also not sure who are the best doctors I should see and the best hospitals since I think this will be risky for my age group. 
Would like some inputs from others on how well their surgeries went and who their doctors were. I live in Augusta GA.
Thank You.
Regina

[ANSydney]

Hello Regina. Welcome to the forum. 2.7 cm is not too large for radiosurgery http://bmjopen.bmj.com/content/3/2/e001345 (click PDF in top right corner).

There is no rush and you may want to have another scan in 6 months to find out its growth profile.

[Abetpds]

Thanks Sydney,
Wow that was comforting.  I was sure that it was too large. At my age, they would probably consider that then.  My concern now is where do I go for the best diagnosis and treatment. I live in Augusta GA, and was told that Keck Hospital in CA is the best, but thats so far away. I am sure we have some good ones in the south or NE. Will  continue doing research in this area.  How are you doing Sydney?  I am so glad I found this forum.
Regina