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.