I've unfortunately joined the club

[JGinLA]

First I'd like to say this is a great website and I'm very happy to have found it, the people who devote their time to creating and maintining it are real saints. Thank You. Now my situation: I'm 51 years old and the sole provider for my family with my youngest of two kids in college. I've had tinnitus for several years which seemed to be getting worse so I finally discussed it with my personal physician at my check up last year. He sent me to an ENT who did a hearing test which showed I had moderate high frequency heairng loss in both ears with more in the left (5 - 10 db) but in the speech range I was normal in both ears and I scored 100% on speech intelligibility in both ears. Since my work involves listening to loud music and I have some outside interests which are also noisy she felt my symptoms didn't indicate a tumor but gave me the option to have an MRI just to be sure. I bought a book about tinnitus and spent some time studying up on it. A few months later I decided to go ahead with the MRI just to rule out the tumor and they found a 4mm AN on my left side. She referred me to the House Clinic because I live just north of LA and they are in my medical insurance network. House Clinic had me repeat the heairng test which was now one year after my previous test and have a balance test. The hearing test was the same as before, actually slightly better in the left ear, and the balance test was normal on both sides. So I've discussed it with my doctor, Dr. Brackmann who I see mentioned on this site, and we are going to repeat the MRI this weekend which will be 8 months since the first one that found the AN. I've read a lot on this site, plus the doctor gave me some articles to read, and since I feel fine and have good hearing and balance it seems that "watch and wait" makes a lot if sense. However Dr. Brackmann says my tumor is very operable and given the volatile nature of business and the economy I can never be sure how long I'll have my health insurance and whether the House Clinic will still be in my network and therefore an available option. I work for a loudspeaker design and manufacturing company and my favorite passions are bicycling, mountain climbing, sking and motorcycle touring so adversely affecting my hearing or balance are concerns for me. I'm not looking for medical advice and understand everybody's situation is unique but would appreciate hearing and learning from anyone who has been through a similar scenario.

Jeffery         

[Jim Scott]

Hi, Jeffery - and welcome.

Thanks for your generous words of appreciation for the ANA website and discussion forums.

I'm sorry you've been handed a diagnosis of an acoustic neuroma but you're in the very capable hands of Dr. Brackman and the HEI team.  Considering your AN is tiny (4mm) I  would suggest that you can observe it (via MRI scans) for possible growth for another six months to a year.  Of course, irradiation is also an option but as you recognize, we don't presume to know what procedure is right for you.  If observation indicates the tumor is growing, then you'll have to make a treatment decision.  If surgery is your choice, Dr. Brackman's advice about the possibility of you losing your health insurance or HEI being out of your network is accurate (if a bit self-serving).  However, I wouldn't hurry into such a serious surgery that could have a profound impact on your quality of life based only on financial issues and things that may never occur.  However, these are difficult decisions that, in the final analysis, only you can make.  You appear to be well-informed and quite rational and pragmatic so I'm confident you'll make sound choices.  We'll be here to help, inform and support, as you need us.    

Jim

[JGinLA]

Jim,

Thanks for the response I appreciate the feedback. I received my package and will be hooking up with the local LA support group. After reading your response I realized my post was poorly written and caused a misconception. The issue about the insurance coverage is totally my concern and wasn't raised by Dr. Brackmann, he has been absolutely great and very helpful. I get my medical insurance through my employer and every year they constrict the coverage a little more so it is a major concern of mine.

Thanks Again,
Jeffery

[FLsunshine]

There are a couple of us on this site with "tiny" tumors.  All in watch and wait.  I'm going on year 5 and its only been this last year that I've had symptoms escalate and almost become unmanageable although my MRI shows only 1mm growth in 4 years.  So location and symptoms are just as important as the size.  Tiny-mighty ones can cause more issues, don't know why though, than larger ones in some people like myself.

Hang in there.  Lucky for you (us) the small size gives you time to make a decision.  Do all your research and you'll know what action is best for you. This forum has the best people to provide you the emotional support you need.

[JGinLA]

Thanks for the response and encouragement. One issue I'm having, and trying to avoid, is sometimes I seem to be paranoid and associate things with the AN that aren't real. For example if my tinnitus gets louder all of a sudden or my ear gets plugged in an airplane I worry it's my AN symptoms getting worse. I'm interested in what you mean by your symptoms getting worse. If you don't mind my asking what types of symptoms are you having?

Thanks,
JG 

[Rivergirl]

Hi Jeff, some ANers cannot cope with knowing they have a brain tumor,however benign and they must have it removed and skip the watch and wait.  The trouble I see is that if the symptoms are not a problem, and the hearing & balance are fine then having surgery can risk injuring that.  House Ear Clinic has a wonderful reputation so whatever you decide with your Dr you will be in good hands.  AN's are funny.... to remove them you risk loosing some nerve function and to leave them you risk loosing nerve function.  Good luck in your decisions, keep us updated.

[kmoltenbrey]

Jeffery,

I too have been recently diagnosed with AN.  Every new symptom can cause a slight panic.  The little bugger seems to tweak the symptoms often, and so I try to adjust to my new normal.  There are days when my symptoms appear worse, but then the next day they are back to the ways they were.  This sight has been a god send.  When new symptoms appear, I need information, or I just need to see how others are dealing with ANs, I come here.  Our new family members here are always willing to help and I am thankful for them.


~Kathy

PS I went on a ten mile hike in the White Mountains last weekend, the first since I was diagnosed in the Spring.  I was nervous and frustrated at first, a bit wobbly on my feet, but then I found my footing.  It turned out to be awesome, and I found a little inner peace that day.   

[nftwoed]

Hi Jeff;

  Soon you will have a growth baseline. It is reasonably common for growth of NF-2 mediated ANs to slow in mid life.
  Your AN at 4 mm. is small and there is possibility you could get through life w/o treatment at all except for conservative management ( watch and wait ).
  Unfortunately, due to the unpredictable nature of surgical or non surgical events, you could lose all hearing by doing nothing, and some balance, or all balance and hearing that side with treatment.
  I believe Dr. Brackmann is one of the best and most experienced Neurotologists in the USA. After all, it is where you placed your hands ( health ) in and paid your dues.
  It seems inconceivable to me to not give this site, and most of all Dr. B and your heart, your undivided attention.