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!
Thursday, April 26, 2012
Monday, April 23, 2012
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:
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.
Sunday, April 22, 2012
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.
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.
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