Author Topic: Whirlwind!! Not sure what the next steps should be.. but don't like waiting  (Read 2253 times)

Gwengal

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About a month ago I went to my family doc and she did several test came back and told me I had a tumor on my ear.  I really didn't understand but I wasn't to stressed out about it.  She sent me to Neurologist for my headaches I was having as well, all he told me that tumor was no big deal didn't give it a name said come back see him in year.  So at this point I was not worried.  (not a very good doc!)  Next my family doc told me to go to ENT.  This doc is someone I trust as he did several surgeries on one of daughter and my father.  The first thing he said is what have they told you.  I stated they said I had a tumor on my ear.  He said "It's not an ear tumor it's more of a brain tumor"   When he said those words I was in shock.   I couldn't believe what I was hearing!!  I was all alone so I didn't have anyone to help ask questions or to support me. ENT doc went into great details showed me pics and explained it.  I understand now it is a small tumor 4mm and I was lucky it showed up on the MRI.  I currently have no hearing damage (although my kids would say otherwise)  I'm going to see a specialist in Sept who my ENT recommends. 

I have been researching the web and when I found this website I felt very blessed!  I don't know what to expect my ENT said at your age you will have to deal with it in your life time.  I hate not knowing if I have to have surgery in 6 months, 6 years or 16 years.  It's the unknown that is scaring me just like I'm sure almost every AN patient feels. 

The main thing I'm struggling with is Vertigo and the ringing and sometime little bit of pain in the ear.  Also, I'm concerned about letting people know about it.  I don't want people to feel sorry for me or treat me different either.  I have a professional job as a Controller for large company and I'm concerned that people would feel I couldn't do my job.  If people don't know anything about AN just like I didn't know they might they Brain tumor how can she function at her job.

Another question Is it really brain tumor or is it an ear tumor?  How do others address this?

The part I feel bad about is my family.  Except for my husband I'm the one that holds family together and take care of my mom.  Even though I'm youngest of the sybling everyone counts on me....  I'm concerned and afraid!!  All keep thinking I just want it gone!!! I don't want to think about it!  If I'm watching and waiting that just makes me "freaked out" little.  I need to be patient but God knows that I'm not.  So I'm learning.... watching and waiting.

Thank you for letting me put my thoughts.

sgerrard

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It is never easy learning you have an AN.

Yours is quite small, so you do have time to learn more about it, and about treatment options. Besides surgery, there is also radiatioin to consider, and just watching and waiting.

The tumor is a benign growth on the VIII cranial nerve, which has branches for hearing and balance. Technically it is a skull base tumor, since it is not in the brain proper. Surgery usually involves both a neruosurgeon and a neurotologist, an ENT specializing in skull base surgery. So it is a cross between a brain thing and an ear thing.

I told my employer, and they are very supportive. I think in most cases patients can continue in their regular job, unless it is very physical, or they are unlucky enough to have some impairments that prevent it. I am a senior software developer, and so far no one seems to think it will affect my work. I would go ahead and spill the beans to those you feel comfortable telling, the support you will get is very helpful.

I know it is difficult to be patient, I have been diagnosed for 6 weeks now, and it seems much longer than that. But the outlook for the future is not bad, whether you watch and wait or get treatment. There are people on this site raising twins and doing all sorts of stuff after dealing with their AN. All is not lost.

Best wishes, Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

OTO

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Gwengal,

I told my peers and boss, but not my subordinates.  I'm a Branch Chief for a large government engineering office, and I felt I needed to tell someone at the office, because I was pretty manic for those first few months after the diagnosis.  Whenever I started climbing the cubicle walls, I just took some time off.  I felt I needed to let the bosses know what was going on.  Plus I found out that another engineer in the office had an AN surgically removed about 5 years ago, so I was able to discuss it with him.   Once I decided on surgery, and set the date, I told my staff so that we could make plans for my being away from the office for the extended period.   You'll find your co-workers will step up, and help you cope.   Everyone is very supportive, and can be a big comfort....   


 


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