Pre-Treatment Options > Pre-Treatment Options

Just Diagnosed - Managing Symptoms

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mac84:
There WILL be days when you'll forget all about it. Promise!

 ;D

notaclone13:
I think you will feel better after you visit the otologist this week.  Unfortunately, I found out about my AN when I picked up a copy of my MRI to bring to my doctor's appt. scheduled for the next day.  I read the path report myself and thoroughly freaked out. I don't even remember driving home.  Luckily, when I visited the specialist the next day his positive attitude very much put me at ease. He reminded me that it was a benign tumor, would likely grow slowly and was still small and thus treatable by Cyberknife.  Once I was out of my "panic mode" I began to feel better and am quite sure you will too.  Luckily you are in Boston and near several fantastic doctors and treatment centers for acoustic neuromas.  Should you need treatment you have good options.  Please check back after your appointment and let us know how it went.

Gtmochi:
Hi KristenWS,

Ooh - the diagnosis is like a punch in the stomach, right? Or getting hit by a truck. Or something violent and random for sure. But, like MA and mac84 have said, it will get better! And there will be days when you forget all about it!

For a few days after diagnosis I was pretty inconsolable. I found out on a Friday morning from my then ENT and had to suffer through the weekend without speaking to a specialist (actually, I fully looked at my own MRI the Thursday night before, and knew what I saw was an AN, but was praying that maybe as a non-medical person I was wrong!). There was only Google for comfort. I was literally crying hysterically in my husband’s arms (dear man!) all weekend long. That Monday I had a doctor’s appointment, then another that Tuesday - that made a HUGE difference in my mindset. I am sure it will help you too! After that, I entered a phase of  alternately mourning and fearing the future. I really thought I’d never feel like a normal human again. But I did! And so will you!

Previous to diagnosis, I only had tinnitus, slight facial sensation, and slight hearing loss (I was unaware until tested). The moment I found out I had an AN, it was like a symptom bomb went off. During that first month or so, my symptoms were totally heightened, and I gave myself tension headaches from worrying all the time and not sleeping well because I was worried.  But once I settled, so did the symptoms.  What really got me through (and continues to help me on days when I am just not feeling it) is to go through the motions of being normal.  I tell myself to just keep swimming. The more I force myself to move and go and do and fight, the better I feel. But man, is it hard. I am sorry you are having this experience.

Know that all will be well! You will find that once you get over the shock and sadness and begin finding your treatment path, you will be just the same as before. One of the doctors I met with, Dr. Slattery at the House Clinic, told me that for someone who has a choice (surgery or radiation or watch and wait) the most important thing is to choose one that your heart is happy with, because then you can move forward with a sense of peace. And he was right...though I didn't believe him at the time!

Jessica

KristenWS:
To you all, I cannot thank you enough for taking the time out to write back to me, share your experiences and to help allieviate some of my anxiety.  I had a terrible day today and spent most of the night hysterically crying with my husband who is holding up the best that he can when also trying to deal with his own emotions and experience.  I just still can't believe that this has happened and just want someone to "fix" me so like you say, the first step is to get with the doctors and get a plan.  Hard to wrap your head around how significantly your life is going to change and that you will never feel like you once were but you have all given me hope and for that I cannot thank you enough.  I will be sure to report back after the appointment on Thursday and again, thank you.  It is a comfort knowing I am not alone. 

CHD63:
Hi KristenWS and welcome to this forum, where you already know you can find much support.

To this day, I can still remember in great detail my extreme fear and anxiety upon hearing the unexpected diagnosis of an acoustic neuroma.  Within a couple of days, I moved into the frantic research phase and talked with a number of AN patients before making my decision on treatment.  If you have not already done so, please contact the ANA and send for the free informational package.  It contains a wealth of accurate information, which should be reassuring for you.

It is so important to talk and/or have opinions of medical professionals with vast experience in treating acoustic neuroma.  Fortunately you live in an area where you can find experienced AN physicians to get more than one opinion.

As for size, your AN is still in the small category, but the specific location is equally important.  Many large tumors cause relatively few symptoms, while small ones can cause debilitating symptoms.  A good AN doctor will help you sort out whether it is advisable to wait and watch or not.

I would urge you to be very careful not to dwell on the worst case scenarios.  Many of us have had treatment and then gone on with our lives.  Some of us have had to make adjustments related to hearing loss, but there are so many options for that, as well.

Take a deep breath and try to relax while you walk through this process.  We are here for you.  Best wishes.

Clarice

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