New with 3.8 cm AN

[Alicia678]

Hi everyone

My name is Alicia, Im 24 and I was diagnosed with a large (3.8cm) AN a few weeks ago. Ironically enough I'm a nurse and had my MRI in the hospital I work at. I looked up the scan the next day at work (a sunday) and found a mass. Good thing I work on an oncology floor with lots of doctors who have seen lots of different tumors and they were able to help me find a neurosurgeon that day before having the "official" results.  I have absolutely no hearing symptoms or hearing loss on my auditory test. The ENT that is doing part of my surgery said "with a tumor that large it is very unheard of to have no hearing loss" My question is has anyone else been in this situation? This is a great website and source of support!

[kmancini]

Hi my name is Karen.  I am 53 yrs. old.  I had a little hearing loss for a couple of years.  Then about a year ago the hearing got worse so I went to an ENT doctor.  Thank God I went there instead of my primary doctor.  They found a 1.5 cm tumor.  I had no other symptons.  I had surgery 4-8-08. I had complications ever since.  Had 2 lumbar drains and 4 surgeries for csf leaks.  Hoping this last one works.  I just found this site also.  Love it knowing other people are in same situation.  I have no hearing in that ear.  Had BAHA implant last week.  Hope everything works out for you.

Karen

[leapyrtwins]

Hi Alicia and welcome.  I'm sorry you have an AN, but not sorry you found us.  This is a great place to be if you have an AN.

To answer your question, not everyone diagnosed with an AN has the same symptoms.  There are definitely commonalities among us, but everyone has a somewhat different experience.  You'll find the same thing goes post op.

There are lots of stories on this forum of patients with numerous symptoms and very small ANS, and conversely there are patients with large ANs and very few symptoms.  Sounds like you fall into the latter category.  Size of an AN doesn't seem to have as much to do with symptoms as location does.

You note you don't have any hearing issues, but do you have other issues that led to your diagnosis?  What was it that made your doctor order an MRI?  I'm curious because sometimes patients go for years without being diagnosed.  Others realize they have a "problem" but are misdiagnosed for a long time.

Where and when are you having your surgery?  We have an AN Calendar where we like to note these things.

Karen -  hi to you also.  I responded to another of your posts yesterday.

Jan

[sgerrard]

Hi Alicia,

I hope you don't mind, I made a new topic out of your post, using the magic wand they give to moderators. That way more people will see it.

We certainly have some members with ANs in the 4 cm plus range. Many of them did not notice any symptoms until it was quite large. Once they do get symptoms, hearing loss is often one of them, but not always. The AN starts in the internal auditory canal, where it can impact the hearing nerve, but then grows out of that into the area at the base of the skull. The additional growth outside the canal generally doesn't impact the hearing nerve, so size is not really the factor for hearing loss.

Welcome to the forum, please feel free to make yourself at home.

Steve

[Omaschwannoma]

It just goes to show you we're all different, our schwannomas are different and how we react to them are different. 

Sort of hard for doctors to put us in "boxes" when it comes to answering all our questions reagarding hearing loss, treatments, healing, and side effect.

Makes us "special"!  Thankfully though the majority of these stinkers are benign! 

Glad you made yourself known Alicia and hope you find peace being here among friends. 

[MAlegant]

Hi Alicia,
I had no hearing loss at all (and still have good hearing post-op).  In fact, my symptoms were a short bout of trigeminal neuralgia.  My tumor was pretty large as well.  I am sending you all my good wishes.
Marci

[mimoore]

Welcome Alicia,
I too had no hearing loss. I had a full feeling in my ear, kind of like when you fly and need to swallow and it clears. Well my was like that always. I also could not explain what I later learned to be numbness but I felt like I could not breath through my left nostril. Pressure on the 5th CN. I went misdiagnosed for 10 yrs. Then just last year parts of my face and tongue went numb and I started to slightly lose my balance in situation it was never a problem before. I went to two different ENTs and was on a wait list to see a neurologist (10 months). I thought this is nuts and went to emerg and they started the ball rolling. A little frustating to say the least. Anyway here I am and here you are, ask tons of questions.
Take care and keep us posted.
Michelle

[Pembo]

Alicia, My tumor was 4 cm and I had very minimal hearing loss in fact I thought my cordless phone was going bad. The doctor was quite surprised at my great hearing test results. What symptoms led you to an MRI?

[Alicia678]

Thank you so much everyone! My AN was picked up on my regular eye exam because they found some jerky eye movements (nystagmus). Im a naturally clumsy person but I had been off balance for awhile and having lots of headaches with vomiting. I always attributed the dizziness and headaches to my birth control. I have switched several times thinking that was making me sick. I also have a very slight sensation loss in my face. Things make sense now though. I would occasionally drool (gross!) and occasionally a hard time swallowing.  The doctors assure me I will lose 100% of my hearing in my right ear with surgery. I have accepted this now but still I cant imagine not having all hearing in 11 days. My surgery is Nov 21. I cant thank you all enough for your support!

[sgerrard]

It sure sounds like you have been having symptoms, just not hearing loss. I'm glad they found it when they did!

I put your date on the AN Calendar (see link below), so we can all wish you well when the day arrives. We also like to know where you are having it, who is your doctor, and what kind of surgery you are having. We can't help it, we just want to know everything.

Best wishes!

Steve

[msmaggie]

Hi Alicia,

Your medical background will be a blessing to you as you navigate through this.  Most of my husband's buddies in college became drs., and I know for a fact that I have talked to them more in the last few months than he has!  You sound like you have had a fair amount of symptoms to deal with.  Everyone has  stories to tell here on the forum, so if you need any answers, just speak up!  Welcome to the club, but sorry about the price of admission.

Maggie

[Kaybo]

Alicia~
Just wanted to join in on the welcome - sorry you are here, but this is a great place to be if you have an AN!!

K   

[leapyrtwins]

Alicia -

being SSD (single-sided deaf) isn't as bad as it might seem.

Lots of AN patients adjust just fine and if you don't there are options like the TransEar or the BAHA.

Jan

[wendysig]

Alicia
Welcome and sorry you have to be here.  As many have said, it's a great place to be if you have an AN. I think you'll find our group a good source of information and comfort and occasionally hilarilty -- that helps break the tension around here.

Best wishes,
Wendy

[Alicia678]

Dr. David Semenoff is my neurosurgeon and Dr. Steven Parnes is my ENT. The surgery is at Albany Medical Center (Albany NY) Im not really sure which way they're going to do the surgery. Dr. Semenoff wants to go translab and Dr Parnes wants to go retrosigmoid. I know the pros and cons to both. I guess whichever way will least affect the trigeminal nerve would be the way I would want. The way I look at it is you cant see deafness, you can see a bells palsy. That sounds so vain doesnt it!