Enough Slacking Off

I went to the gym today. I had been going 3-4 times a week up until April when my husband had to stop working out because of his shoulder.  But really, the truth is I wasn't working to hard at it and was just going through the motions. My body is feeling (and showing) it. I've felt sorry for myself and used my AN as an excuse.  NO MORE!  Today I returned to jogging on the treadmill and it felt great.  For the past 4 years I have been obsessed with Yosemite and I've decided a trip there is in my future.  As much as I would love to climb half dome, I think my fear of heights will cripple me once I reach the cables. Even so, getting to the cables will be amazing and that's what I'm shooting for, this AN may grow to a point where it affects my balance, I'm doing it while I still can.  First....gotta get my butt in shape!

6 Months and No Growth

The title says it all.  I went for my follow-up MRI in late July and the report came back showing no growth.  Of course, I needed to verify for myself so I got a copy of the disk and sure enough....  who needs a radiologist when you have a home computer.  No need for a doc either, I have WebMD.  Seriously though, seeing it for myself gives me so much more comfort.

I've recently found a cause to participate in.  I've formed a team for the Miles for Hope walk in St. Louis on September 30th.  To my surprise, I've already raised $615.  My goal was to raise $250.  Wow, what amazing support.

On the actual AN front, my husbands medical problems have placed my focus on him.  Now that I know that my tumor is stable, my tinitus seems to have calmed down as well, or maybe I'm just getting used to it.    I don't notice the hearing loss as much either,and sometimes I have to cover my good ear to see if my bad ear is still bad....it is.  The blessing in this is when my sons alarm clock goes off and he doesn't turn it off.  I can just roll over and ignore it.

Next MRI in one year.   Heck, its already been a month since the last one.

5 months

Its been 5 months since my MRI.  8 weeks ago I didn't see how I could make it the full 6 months, but here I am.    Truthfully, as life does, I was thrown a curveball of a different sort.  My husband suffered a pulmonary embolism following shoulder surgery and suddenly my tumor seemed insignificant.  Its been 6 weeks for him, and he has a way to go.  His recovery is much like that of someone recovering from AN surgery....fatigue is his biggest struggle.  We both realize how lucky we are at this moment, so I can wait one more month for my MRI.

It's Alive!

I saw Dr. B on Monday, 5/14.  My audiogram revealed that the steroids worked, my hearing has recovered to very close to my February levels.  This has really set me at ease and he suggested waiting till August still for the next MRI.   I'm good with that in light of the hearing results, its amazing how much better I feel when I know that my hearing issue is likely not AN related.

On a side note, but quite serious, my mind is on my husband who had shoulder surgery less than a week ago and just an hour after Dr. B cleared me was sent to the hospital with a pulmonary embolism.  Thanks to God and all who have been praying, he is recovering without further complications.  This obviously makes my AN a very insignificant detail at the moment.

Steroids

On 4/20/12 I went to bed feeling my hearing had diminished and that my tinnitus had worsened as well.  I woke up the following morning with drastic loss in hearing.  I had an audiogram that Monday and was prescribed oral prednisone.  After 14 days of steroids, I finished them up about a week ago.  I was able to regain some of my hearing, it peaked around day 6-8 and then started declining again.  The fullness feeling is back and the tinnitus is back just as strong. I've found that I am extremely sensitive to sounds.  Clanging dishes, car doors closing, the electric stapler on my desk, even the TV.   I've also been experiencing some headaches, though I can't say for sure they are related to my headache.
Last Saturday I attended the support group meeting for our local ANA chapter.  The timing was perfect, again, and the topic was hearing devices.  An audiologist explained how to read your hearing test report and went over all the different types of hearing aids.  This was extremely helpful in that if my hearing continues to get worse, I'm certain I will be looking into a hearing aid at some point.  She said that they don't like to put aids on persons with an active neuroma.  That hearing needs to be stable for 6 months.  Since costs are not typically covered by insurance and adjustments will be needed as hearing continues to decline.  To be honest, this is not what I wanted to hear, the thought of  just waiting for things to get as bad as they are gonna just seems awful.  Just waiting and not being able to do anything.
The last few days I've had plenty to keep my mind off things, my husband had shoulder surgery on 5/10, so I've got my hands full taking care of him and the house.  He is the laundry guy, but for the next few weeks I'll have to be the laundry gal.  My least favorite household task.
I see Dr. B again tomorrow.  I think I will ask if he can order another MRI.  It has only been 3 months since my last MRI, but with the increase in symptoms I find that I am thinking about my AN daily, several times a day and wondering if there has been growth.  What if I am in that rare group with rapid growth?   I don't know how I will make it 3 more months if he doesn't order one.  I do trust his opinion, though, so one way or another all will be okay.

Find Out Who Your Friends Are

Besides the medical side of AN an diagnosis, there lies the emotional side.  They say that it is in the worst times that you find out who your best friends are.  Upon diagnosis, I chose to confide in a few friends and with that I found that some have distanced themselves, or perhaps they were never there for me anyway.  How hard would it be to pick up the phone just once to ask how I am doing, or how my husband is coping?


Then there is the other spectrum......a few have really stepped up and have made themselves even more a part of my life.  I remember the day I was driving to the support group meeting, just 2 days after diagnosis.  I called my friend Mary from my car and told her on was on my way there, the first thing out of her mouth was an offer to attend with me.  Right then and there, she was going to drop everything and go with me.  That's a true friend!    I often confide in a close family member, she listens to my complaining and always has a positive word or helpful suggestion.  I'm certain she has no idea how much I appreciate it, but I bet she thinks she does.  Sometimes I feel so bad for unloading my problems on her.  My new friend that gave me doctors recommendations......I met her only in September,  and already I know that she is there for me.  She sent me flowers on my birthday!  Then there's my workout buddy who has her own hearing issues: We stand side by side on the treadmills,  she on my right side so as to hear me with her good left ear and me to hear her with my good right ear.  How great that we can do that, good thing its not the left ear for both of us.  What incredible friends I have come to rely on in this process.   I love you all!

I Love Dr. B!

Did I mention that I love Dr. B?  I called his office when they opened this morning at 8:30am.  I explained my reduced hearing, the increased tinnitus and the sensitivity to noise.  They took down my info and called me back 10 minutes later.  Dr. B was out for the day, but they wanted me to come in for a hearing test, they would then fax him my results.  They got me in at 9am and my hearing tested even worse than I expected.  I now have reduced hearng at all fequencies and my speech recognition has dropped from 90% to 48%.  I struggled to even get it that high, there was a lot of guessing going on.  I left the office and was back to work by 9:30am.  Around 11am his office called back and said they had called in an RX for prednisone. The regimine is pretty high, 12 pills a day for the first week, then tapering off the 2nd week. 130 total.  All worth it if I have a chance at salvaging my hearing.

Late in the afternoon a new symptom has appeared.  A thumping, wooshing sound.  I can feel and hear my heartbeat in my ear.  With this I feel pressure as well.  I'm hoping the prednisone takes care of this as well.     Crossing my fingers and saying my prayers.

I've often seen the words "useful hearing" and "serviceable hearing" used when describing AN's.  Out of curiousity, I Googled that as well, searching for the scale that I previously found but did not feel was pertinent at the time.  Based on this, my hearing currently fits in the "Non-serviceable" category, but just by a point.  I'm hoping the steroids will boost me back to the serviceable range at a minimum.  Non-serviceable hearing means that in the case of a surgical removal the surgeon would most likely use an approach that would certainly sacrifice the patients hearing  (rendering the patient single sided deaf) in order to save the facial and balance nerves.


Here is what I found:  

Gardner Robertson Scale

• Grade I (good-excellent)
  • pure tone audiogram (dB) : 0-30
  • speech discrimination (%) : 70-100
• Grade II (serviceable)
  • pure tone audiogram (dB) : 31-50
  • speech discrimination (%) : 50-69
• Grade III (non-serviceable)
  • pure tone audiogram (dB) : 51-90
  • speech discrimination (%) : 5-49
• Grade IV (poor)
  • pure tone audiogram (dB) : 91-max
  • speech discrimination (%) : 1-4
• Grade V (none)
  • pure tone audiogram (dB) : not testable
  • speech discrimination (%) : 0
• If PTA and speech do not correlate, use lower class.

Symptoms Worsen

6 months didn't seem so far away, but I'm not even 2 1/2 in and I think about this AN every day.  Some AN'ers chose to name theirs, and I'm considering.  Andy seems like a good name, annoying ANdy.  Yeah, I think I like that.

ANdy has given me a fit this weekend.  I've already been experiencing hearing loss and mild tinnitus.   These worsened this weekend, so much so that I'll be calling Dr. B tomorrow.  Last night around 11pm while sitting around a campfire I realized that my hearing was reduced dramatically.  If my speech discrimination was at a 90% earlier in the day, I'm probably around 50-60% now.  If I cover my good ear, I can still hear sound, but can't make out words.  I tested this in the car while listening to the radio on the way back from our camping trip, but found that since I already knew the words to the songs I could "hear" them just fine.  Switching to an unfamiliar station showed the true extent of the loss.

My tinnitus is going crazy as well.  I came home and napped, but found it hard to fall asleep, I may have to consider running a fan or something at night to mask the sound.  The odd part is that if I layed perfectly still, it was better, but the slightest movement, particularly moving my head, would set off sounds similar to the test patterns on the TV late at night, or the whistling of a storm through my ears.  They are very sensitive and almost hurt when a hear particular sounds such as a car door closing or someone dropping something.
We went to my son's raquetball banquet tonight, which was held in the high school cafeteria.  It was so hard to make out what was being said at times.  Before the  banquet actually started, the chatter of everyone talking was the strangest I had seen, lips moving, but just a roar of sound.  I could make out the conversation of the people behind me and off to the right.....does that woman ever shut up?........but I couldn't hear a word of the conversation on my left.  I was nearly in tears when I left there.  I knew my hearing would worsen, I thought it would be gradual.  This seems so sudden.  Better check with Dr. B to make sure it's not something else; rather, in hopes that it is.

Remember that 6 month thing?  It's so similar to a pregnancy, it goes so fast for everyone but the expectant parents, notably the mother.  She just wants the thing over.

On a plus side, Barnes Hospital is installing a new Proton Therapy machine which could be used to treat this thing.  Similar to the cyberknife, but the depth of the radiation is also controlled, whereas with cyberknife you have an entry and an exit.  Previously a Proton machine would require a building the size of a football field and cost over $100 million to build, this new machine fits into the same size area as traditional radiation.  Interesting tidbit....a Proton travels 300,000 miles before entering the body.  Barnes expects to start treating patients in the fall with their new machine. I'll look into it more if necessary.

Third Times A Charm

For my third opinion I saw Dr. B.  He was a keeper, he immediately put me at ease and told me he did not feel I needed surgery.  As a surgeon, that's how he makes his money, but also as a surgeon he likes to make peoples lives better.  AN surgery is rough, recovery can be hard and the lasting effects (headaches, dizziness, facial weakness, not to mention continued hearing loss) are often worse than the symptoms that lead to the AN's diagnoses in the first place.  He trained with doctors at Hous Clinic, the leading surgery center in the US for AN treatment, but no believes that surgery is always the best answer.  In the case of my small AN he recommends watch and wait, and later radiation if treatment is required.  This philosophy mirrors mine so Ive chosen Dr. B to follow my vpcare and will repeat the MRI in August.  6 months doesn't seem so far away.

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.

Pre-Diagnosis, The Calm Before The Storm

On January 27, 2012 I saw an ENT after many months of suffering mild hearing loss in my left ear.  The problem actually started around April 2011 when I suddenly suffered hearing loss in both ears due to a cold or allergies.  I googled "sudden hearing loss" and found several sites suggesting that it be treated as an emergency, so as to start a course of steroids immediately which may reverse the hearing loss.

I made a trip to the urgent care center where they advised I could do just as well on a decongestant and recommended over the counter Claratin and to follow up with my primary care doc if no relief.  Two weeks later, slightly better but still not normal I did just that.

My primary doc disagreed with the urgernt care doc. He said the correct treatment would be an antihistimine, he prescobrf Nasonex.  This seemed to do the trick.

Fast forward 6 months....October 2011, my hearing loss is back, I had another mild cold, after a few weeks I decide to call my primary and get more Nasonex, they call it in for me.   Several weeks go by, then several months, my hearing isn't much better.  I know I haven't been using the Nasonex religiously, only once day most days sometimes not at all.  I decide its time to get serious and whip this thing.  I start using it twice a day as directed around the middle of December, still no improvement.  Its become somewhat of a joke at work, how I hear the wrong words or say huh? Or what? All the time.  Late January, still no improvement, I finally call an ENT.

The ENT checks my hearing as well as my speech discrimination and says that my hearing is not "that bad".  I probably had a virus, and unfortunately we've missed the window for treatment with steroids.  The hearing I have is probably the best I'm going to have.  I ask a few other now meaningless questions and he can tell I'm a little upset.  Though not crying, I'm sure I have some tears welling up.  How could I have waited so long?  He decides to order an MRI.  I leave with an appointment the following week.