Post Diagnosis = Post Depression

It's been 2 weeks since I was diagnosed.  I'm feeling a little better today. The last 3 days were the roughest of all, I had a slight head cold which made me feel awful, but on top of that depression set in and I just couldn't get myself to get out of bed. I had every intention every morning to go to work, but when the time came I just couldn't do it. I lay in bed all day reading AN stories or researching doctors. Finally had enough of the self-pity and went to work today.

The first few hours were awful, still wanting to cry at the drop of a hat. I finally decided it was time that I tell my boss. I felt as if the lieing about appointments was going to catch up with me sometime, maybe it already was. What a weight that was lifted when I finally told her. She was understanding and supportive, said all the right things. I'm so glad to be working there, just hope they will be patient with me while I work through this.

I have an appointment with a 3rd doctor tomorrow. Wondering how he will view this. It's a small AN, only 5mm x 7mm. I can't understand why surgery is even being suggested. I'm determined to find answers.

It's Not Like It's Brain Surgery......

I see Dr. H for my second opinion today, John accompanies me on this trip as he did last week.  I love him for this.  He's a great husband and is being very supportive, even sent me flowers for Valentines day, the note is still tacked up in my cubicle. 

Dr. H comes in, he talks about AN's, treatment options etc.  By now I have read alot about the surgery.  It's brain surgery.  You are in ICU for a day, then moved to a regular room if no complications for a few more days.  Dr. H says I will be out of work about 6 weeks, but surgery is his recommendation.  I question radiation, he cautions that if radiation is unsuccesful that surgical removal is then more difficult.  I've read that post operative headaches are very common, Dr. H addresses this as well, he outs the bone plate back in, not every surgeon does this.  I leave this appointment stunned.  I know that i was warned he was quick to operate, but surely the size of my AN would be a factor, it wasn't.

I go home and crawl into bed for the next 3 days.  How can this be happening?  Why me?  Why now?  I've just started a new job, my husband is still recovering from a car accident, the are other issues with the health of my son.  I don't have time for this, can't it just go away?

Over the Hill, All Downhill from Here?

I turn 40 today,  I'm staying at a nice lodge about an hour and half from home with some friends that we go with every year on Presidents weekend.  I'm having fun, but looking around I wonder if things will ever be the same.  Here are these people, some close friends, some acquaintances going about their business as if nothing is different.   Only a few know of my situation, still I wonder how everyone can be having so much fun when I have this tumor in my head.  By now I've seen my MRI, the tumor is only 5mm x 7mm, about the size of a jelly belly jelly bean.  Yeah, its classified as small, and statistically likely to grow only 1-2 mm per year, but still.......a brain tumor.

This is not what I wanted for my 40th birthday.

Acoustic what?

For those finding my blog after being recently diagnosed, you've probably got the "what?"  down already, but it occurred to me that family or friends reading this may not know what it is, so here are the cliff notes.
An Acoustic Neuroma is a benign brain tumor, more appropriately a skull base tumor,  located on the 8th cranial nerve.  This bundle of nerves leading from the cochlea to the brain stem travels through the internal auditory canal.  Included in this bundle is also the balance nerve and the facial nerve.  Think of a piece of conduit running wires from the undrrground utility connections in your yard to your house.  Although the most frequent symptom is hearing loss, some patients also experience facial pain or weakness as well as balance issues.  Hearing loss is a symptom of the neuroma, but the neuroma is not an ear problem, the problem is purely a nerve problem, your brain does not receive the correct signals which result in a miscommunication or lack of communication with the brain.  Depending on the exact location of the tumor within the canal or extending outside of the canal into the cerobellapine angle the neuro if allowed to grow could press on the brain stem and cause difficulty with breathing and other basic functions.  It is rare for a tumor to grow this large before being diagnosed, particularly with today's advanced medical imaging, but still there are people who go undiagnosed and die from other reasons only to find a neuroma upon autopsy.  I addressed treatment options in a previous post. 
I just wanted to clarify, this is not an ear problem, it is a nerve/brain problem.

Ehhhhh, What's Up, Doc?

On Wednesday, February 15th, I see my first doc.  Dr. M.  I like him well enough, he is a nice enough guy, but he seems so young, I wonder if he is experienced enough.  He says he is around my age, looks at my chart and then says he is a month younger than I.  What.......I'm turning 40 in 3 days, how can this guy be experienced enough in such matters.....okay I'm in denial about just how old 40 really is.  His recommendation is watch and wait, and if needed later, Cyberknife, a form of fractionated radio surgery (radiation).  When I question how many radiated patients he has had that go on to later need surgery, he answers only one.  One out of 20......hmmm, this is a rare tumor, only one in 100,000 people will be diagnosed each year, but I was really hoping he had seen a few more patients.  Still, I like him.  I'll see Dr. H next week and then decide who I like best.

Education and Support

The next few days are spent on the internet, man is this thing scary!  I find a wealth of information at www.anausa.org.  I sign up for the forums, I request literature, I find a support group that will be meeting in just 2 days.  I am on this thing like white upon rice. I call and make appointments with Dr. H and one of the two that my friend recommended.  I read up on treatment options: Watch and wait, radiation and surgery; symptoms:  hearing loss, tinnitus (ringing in the ears), balance issues, facial weakness; side effects of treatments:  hearing loss (many time complete hearing loss on the affected side), facial paralysis, fatigue, headaches, balance issues.  Each treatment, or lack thereof, has its own issues and many are common in all options.  I learn that I will very likely lose my hearing gradually as a result of treatment or deterioration prior to treatment.  Right now my symptoms are only slight hearing loss and mild tinnitus.  I'm learning as much as i can so I can ask intelligent questions.

The support group was very helpful, just 2 days after diagnosis I am meeting others with Acoustic Neuromas (AN's).  Three have had surgery, one in watch and wait and another newly diagnosed and still exploring her options, like I am.  I leave the group feeling good, the woman in watch and wait has been so for many years, her AN hasn't grown, though her hearing has been compromised.  She wears a hearing aid, as do two others.  One woman is single sided deaf and considering a type of hearing aid that will transmit sound wirelessly from her bad ear to her good ear.  Two of the women who have had surgery show some facial weakness, one worse than the other, but not nearly as bad as I  expected.  It is here that i hear the word benign brain tumor.  I stumbled upon it once but then dismissed it.  Now im faced with it again and told that if you have to have a brain tumor this is the one you want.  Still, I leave feeling better, seeing that life does go on.

Let Me Introduce You to My Little Friend

Nearly a week has passed and I haven't heard from the ENT, I'm a bit angry thinking I have just spent over $700 on this test and i don't even get a courtesy call with a negative result.  I call the ENT and leave an answer on his machine.  Within about 10 minutes the ENT calls me he has just reviewed my MRI, I later get a 2nd call when they retrieve my voicemail. Seems he was calling me prior to having received my call, I'm not so mad anymore. 

" I've reviewed your ENT and there is a growth on your auditory nerve called a Vestibular Schwannoma.  This is beyond our expertise so we are referring you to Dr. H".  Stunned, I don't even know what to ask. "We will send your records to him, you should call him for an appointment.  We consider you to be out of our care at this time since this is something that a specialist should treat, but feel free to call us if you need assistance......" or something like that, I'm not following very well. I also hear the words benign tumor and unilateral hearing loss.  My head is spinning.  I ask just one question...Can you spell that for me?  I'm then given the spelling as well as another name, the more common.....Acoustic Neuroma. 

I'm at work during this phone call.  I have no idea what I have just heard nor do I know how to react.  I hang up, sit at my desk and wonder if I should cry.  I take my phone to the bathroom and start Googling Acoustic Neuroma. I call my husband, John, and tell him over the phone just as i found out.  This probably was a bad idea but I'm not thinking straight.    I recall a conversation with my new friend on the evening of my MRI, when I found out she worked for an ENT.  I text her..."MRI says I have a growth on my auditory nerve, what do you know about Dr. H?"  She replies back "I'll call you tonight".  Back in my office I have about 3 more hours to finish out the day, I consider going home but what would I say. 

At home that evening I call my friend.  She tells me I have options and gives me the name of 2 other doctors.  She warns me that Dr. H is likely to recommend surgery and that although he is a good surgeon, he has a reputation of being quick to operate. I call several family members and share the news.  I cry a little, I cry a lot, then I turn to what I know best.....the internet.

Expensive Nap

Over the next week I debate having the MRI.  This is not a cheap test, I have not met my deductible for the year, perhaps I should see another ENT.  I mention it to a friend who had a prostetic implant for hearing loss several years ago and I get the name of her ENT.  Work is hectic, and I don't have time to deal with yet another appointment.   I have the MRI.  I leave there and post on Facebook how I just wasted my time and money on a pointless test, but at least I got a nap out of it.....yes, you can sleep through an MRI.