Of Medical Importance
My Experience with an Acoustic Neuroma Brain Surgery

In May 1997 I had surgery for an Acoustic Neuroma. I kept this diary of my experience, but you can also see these links to information on acoustic neuromas.
Acoustic Neuroma Association at http://ANAusa.org/
and the University of Washington's page with an excellent explanation of Acoustic Neuroma's.
http://www.neurosurgery.washington.edu/clinical/acouneur/acouneur.html#Trans

For your convenience if you've read before and want to skip to an area, click on these links:
MRI - Surgery Day - Synopsis - One Year Later

August 2005 Update - I got a BAHA

My Acoustic Neuroma Journal

When I was diagnosed with an Acoustic Neuroma (hereafter called AN) I searched the Internet on that topic. Among other things, I found a web page by a guy who made a diary from diagnosis to the time he went back to work. That made me decide to keep a journal as well. With that in mind, I will go backwards in time and reconstruct the beginning. With the earlier dates, I have put in impressions at the time as well as what I now know in retrospect. By the way, a note that has nothing to do with AN; I am O+ blood type. I've found out before but never had it written down anyplace.

1995-1996

I'm not sure when I first noticed "white noise" in my right ear. I know now that was the first symptom, but at the time I thought I was hearing the fan from my computer tower which sits on the floor to the right of my chair. Even when it became constant, I didn't think to much about it since I've heard that tinnitus is common, and that not much can be done about it.

The phone that I use 99% of the time is a one-ear headset that I wear on my right ear. It has a volume control that I originally set at about 4, but gradually upped it to 9 (the max). Again, a clue that I didn't recognize. Sometimes I had it back down, many times it depended on who I was talking to. Now I know that was because the tones in peoples voices are different, and I could "hear" some, but not others.

Since operations on my foot in the period from 1978-1981, I've periodically had slight balance problems; usually when I've been on my feet to long, or I was barefoot. So the other clue I missed was balance problems. There was a time during 1992 that I had a several day period that when turning over in bed I experienced sharp vertigo - even went to ear doctor about it. He said I had an inner ear infection and prescribed antibiotics. I didn't believe I had an infection as I had no other symptoms of one, but he said that was possible. I now wonder if that was the beginning of the balance problems. That particular problem went away eventually, but I think it was about that time I started "side-stepping" occasionally. By that I mean that I would "start" to lose my balance, causing me to step somewhat sideways. I've already heard someone else use that same term.

During that time I would periodically feel like I had some wax build up in my ear, though that feeling came and went. And I would have bouts of deep down itching. Again I thought nothing about this as both feelings can be normal.

About the beginning of Jan 1997

My nighttime pattern is to go to bed at 11pm, then read for about an hour while listening a portion of that time to the news on TV. The TV is to the left of the bed, so only my left (good) ear "faces" it. One night I was too sleepy to do my usual reading, so laid on my left side facing the TV. I noticed the volume was low, so I raised my head to reach for the remote to turn the volume up. When I lifted my head, the volume changed. Went back down and the volume went down. Realized that wasn't right so sat up and faced the TV and covered one ear then the other. That was the first time I realized that I was not hearing as well out of my right ear.

By this time that "wax build up" feeling was very strong, so I concluded that the wax was built up enough that my hearing was affected. When I was a child, I had wax problems a lot; many times the doctor had to remove big wads of wax that were too stubborn for my mother to remove with the conventional hydrogen peroxide method. I was planning on making an appointment with my primary care physician (Dr Norman Johnson, Arcadia) sometime soon anyway (about something entirely different), so I decided to have him take the wax out at that time.

21 Feb 1997

Went to see Dr Johnson and, after telling him about my TV experience and the feeling of wax, asked him to remove wax. He looked in my ear and said there some wax, but nothing that would cause hearing loss. He removed a little bit of wax, then suggested an audiogram (fortunately he had the equipment). The scores in my left ear were normal 10s and 20s but the scores in my right ear were 40s. He gave me a referral to an audiologist for better testing. This was the first I knew that I had an actual hearing problem.

12 Mar 1997

The audiologist (Dr Lucy Shih, Arcadia) gave me a more extensive audiogram. This one gave me scores in the 40s and 50s. I told her about the white noise and the wax problems as a child. She asked about head injury (no) and about my balance. At first I said no, I didn't have any balance problems. Then I thought about it some more and that's when I started putting two and two together. After all this history Q & A, she said that it sounded like I had some nerve damage and that she was ordering an MRI to find out why. Though I didn't say it to anyone, I knew she was ordering it to see if there was a tumor. (Common sense since MRI is for seeing soft tissue, what other soft tissue would be causing nerve damage?).

3 Apr 1997

I had the MRI done at St Luke's Medical Center in Pasadena. Since I had never seen a head MRI, afterwards I asked the technician if I could see the pictures on the screen. He fast forwarded through a few of them, but not fast enough. Even to my layperson's eyes, I could see the tumor - a big white spot near my right ear without a corresponding spot near the left? Pretty obvious. This was a Thursday, and strangely, even though I "knew", I didn't call the doctor back for my follow-up appointment because I was just plain so busy I forgot.

click to enlarge

7 Apr 1997

About 8:30 Monday morning I was awakened by the phone. It was Dr Shih (herself, not a nurse). She wanted to know when I was going to come in for my follow-up. I think I surprised her when I stated, "I have a tumor don't I? I saw it on the MRI". So I kind of startled her into confirming it over the phone. I went in to see her at 10:45am, at which time she told me about AN, and that she was putting in the referral to USC Medical Center in Los Angeles to Dr M. and Dr G.

12 Apr 1997

I made an introductory post to the AN list <ana-info@neurosurgery.mgh.harvard.edu> with a subject line of "Just Diagnosed". Balance of today's entry is that introduction. I'm including it since it shows my attitude as of that date.

Diagnosed Apr 7th w/ 1.5x2.5cm AN at right ear. Already burned up the internet and gotten lots of info. Narrowed down to choosing between suboccipital and translabrynthe. Seems to be some good pros and cons of each of those. I'm 48 and have good hearing scores in left ear (10s & 20s) and scores of 40s & 50s in right ear. Thought of losing rest of right hearing doesn't bother me that much, so hearing preservation is not the primary reason to choose between two approaches, it's the other risk factors. However, I won't be able to afford any kind of hearing aid. My husband has Cigna so won't have expenses for surgery etc, but hearing aids are specifically excluded from insurance. I spend a lot of time on the phone but will just have to get used to wearing my headset on left ear instead of right.

I'm too stubborn to be scared of surgery, so have a good attitude. My philosophy is "I don't need good hearing to do genealogy". Now, if it was my eyes, I'd be screaming bloody murder! I've been tracing my family tree since 1978 and am totally addicted, so I gotta read those microfilms. Gonna try to set surgery date for first week of May since I don't have anything during May and most of June that "can't be postponed", and I can concentrate on recovery. Have something I want to go to the last weekend of June, and am determined to have my balance back enough to attend.

That's enough of an introduction for now.

23-28 Apr 1997

I had several email exchanges with Dr John House of House Ear Clinic,. (Portions edited and snipped)

Date: 4/23/97 2:20PM

Subject: Q about other doctors

Hope you don't think this is an intrusion to write you outside of the AN list. I've heard so many good things about your clinic, but don't know if I want to hassle HMO to go there. Just wanted your opinion of Dr [M] who will be doing my AN surgery? Dr [G] will be part of the team too and someone said that he is a colleague of yours. Am I in good hands? My appt w/Dr [M] is on Monday, and I hope to set up surgery for as early in May as possible. Thanks for your time, Kathryn

Date: 4/24/97 5:23PM

Subject: Re: Q about other doctors

Thanks for your note. Dr [M] is OK. He does not do nearly as many Acoustics as we do (we do 3 or 4/week and have been doing so for many years.

I am checking with our accounting dept as to why you can't come here. I agree with your decision regarding getting the tumor removed rather than radiated. If you have radiation it does not remove the tumor. It may or may not stop it from growing. Over the years we have seen many which started to grow again. In addition it is necessary to have MRI's every 6 mos or year forever or ??? we don't know how long they need to be followed. Removal of the tumor after radiation is a real challenge because of the scar tissue. If you have any questions you can call me. 213 483-9930

John W. House, MD House Ear Clinic Los Angeles

There was more email that for purposes of journal aren't pertinent as they had to do with the frustration of dealing with HPG and the referral battle.

Date: 4/28/97 8:32PM

Subject: Today's appt w/Dr [M]

> Thank you for letting me know what has happened. Needless to say I am also very frustrated by these things. I have asked my people to find out why they turned you down. We do work for Huntington Provider group regularly. How big is your tumor? How is your hearing? Let me know how your appt. goes. <

1.5x2.5cm and my hearing scores are in the 40s-50s in right ear, normal 10s & 20s in left. The white noise is more bothersome than the lack of hearing. I hadn't even noticed the hearing loss til the first of the year. Dr [M] spent over an hour with me (one advantage of being the last patient of the day) and explained a lot. Much of it I had already learned from the 'net, but still, it reinforced that what I interpreted was accurate.

I was impressed with the way he explained things, but some things bothered me. Everything I've read so far says that the "team" is important the 'otologist, the 'surgeon, and the 'physiologist. Well, he and Dr G don't have a "regular" 'physiologist they work with. Dr M puts in the electrodes himself and they "hire" (his word) someone from a pool of them. All else considered, how important/not important is that factor? He understood my timing concerns and subject to Dr G's schedule and the operating room scheduling, didn't seem to think it would be a problem in having surgery before he leaves on the 12th, which is 2 days before my own "deadline".

In discussion and response to some of my questions - the approach would be retrosigmoid, he does 25-30 a year, about 60-40 retro vs trans. And his retro hearing preservation percentage is 40%. That seems a lot lower than what I remember reading about with House Ear (and others for that matter). The facial nerve percentage he gave me for 1.5-3.0 is 60%. What are your percentages etc? All the "numbers" differences bother me.

Today, before I went, I tried one more thing. I called Cigna Customer Service to find out my rights in choosing who I went to. The gal there talked further with HPG and found out that they turned me down only because they went with Dr Shih's first referral, that her second was labeled something to the effect of "patient request". The Cigna gal is going to find out more first thing in the am. By noontime I should know if that will be effective in getting the referral changed. I *did* tell Dr M about what I had been trying to do in going to your place. He asked if he could get the scheduling done by the time I call around noon, did I want to proceed so he could reserve? or was I going to still pursue going to House Ear? I told him I would let him know for sure when I call.

Regardless of which, he gave me the Rx for pre-op CXR, U/A, EKG, CBC, PT/PTT, and SMA12 and I'm sure Dr Johnson will be able to push those through right away. I feel confident that they will be done before the week is out. He said that the blood donation was a personal choice, that even if they went the bone plug route, they don't use the (something) glue that's made from the blood, and that very seldom are blood transfusions needed. If I do go with you guys, are there any other tests that should be added?

I guess bottom line, is that I have to wait til I see what Cigna comes up with when they talk further with HPG in the morning. Then, if they do come up with the referral "immediately", to see if you could schedule me for surgery prior to the 14th. My husband leaves town the aft of the 15th, I want to be out of ICU before he leaves so he can go with an easy mind. - Dave is squeamish about hospitals, his ex was a borderline hypochondriac, and I'm ok with him not being around for the long haul. Besides he'll only be gone thru the 19th. My mother will be my "keeper" while he's gone, and during the days for awhile after I get home.

Well, here's hoping you get this before you go to work in the am so that I have your reactions before I (hopefully) have to decide. I did tell him about my efforts to get the referral transferred to House Ear.

Date: 4/28/97 6:00PM

Subject: Re: Today's appt w/Dr [M]

> Dr M puts in the electrodes himself and they "hire" (his word) someone from a pool of them. All else considered, how important/not important is that factor?<

We have our own people who do all of the monitoring. I don't think that is a big problem. As for facial nerve results: 95% have a perfect or good facial nerve resulting the 1.5 cm tumor. I would have to see your MRI before I could comment on the possibility of preserving hearing [my note: he said on phone 70-90%]. When we have the best chance to preserve hearing we use the middle fossa approach. I doubt that Dr. [M] and [G] do this. My biggest concern is the surgeon leaving town 2 days after surgery....did I read that correctly? The 1st five days are critical and if a problem is going to occur it does so in the first few days. I would not want him leaving town during this critical period of time.

If you have any questions let me know.

John House, MD

28 Apr 1997

Appointment with Dr [M] - Found out that the posterior fossa and suboccipital are the same and that retrosigmoid is a modified subocciptal which never opens the mastoid. (Think I got that right). Most of what I found out at visit is covered about in my email to Dr House.

While at Dr Maceri's, I had a couple twitches in my right cheek. He was out of the room at the time, so I didn't think to mention it. Is this a new symptom or a coincidence? (Later found out it was a coincidence - it ceased happening other than comments in May 3^rd entry).

29 Apr 1997

Had a very restless night and have come to the conclusion that I will fight to go to House Ear Clinic. Told Dr [M]'s office of my decision and sent the following email to Dr John (Dr House is usually called Dr John to distinguish him from his father and uncle).

Date: 4/29/97 6:45 AM

Subject: Tossing and Turning All Night

Dr House,

You'll probably get this at the same time as the one where I described appt w/Dr [M]. I've been awake since 3:30 and finally got up at 5:00 (after going to sleep about 1:00). I've been tossing and turning and the biggest thing I can't get out of my mind is the numbers. Dr M said 25-30 a year and that about 40% of those are the retrosigmoid (I had it reversed in my earlier post.) That means about one a month compared to your 3-4 a week. I am impatiently waiting office hours to continue talking to Cigna and HPG to get them to change the referral to you.

2 May 1997

Since Tuesday, I've been on the phone with Cigna, HPG, and House a lot. Cigna is helping me (so far) about trying to get them to give me the referral to House. Found out something new - even if I get the referral, that doesn't mean I'll get the approval for the actual surgery. Although House is on contract with HPG, St Vincents Hospital, where they do their surgeries, is not a contract hospital. Will cross that bridge when the time comes.

Meanwhile, this afternoon was the big day for my hair. It's now the shortest it's ever been. Quite a change from the longest it's ever been. When I the measured the "tail", the majority of it was 18 inches with some strands up to 21 inches. My mother made a video of my hair getting cut. My new "do" and I took Dave to the Red Lobster for his birthday dinner.

3 May 1997

Yeah! Hurdle number one has been crossed. In today's mail I got the referral to House Ear. I'm so excited I can't get any work done - will really have to buckle down tomorrow to make up for it.

In the past week, I have had about 3 incidences of right cheek twitch, and several, very minor headaches. The headaches are in the vicinity of the neuroma and do not have the same "feel" as the stress headaches I've had in the past. However, with the stress I've been under, they could be stress headaches. It will be interesting to see if the twitching and headaches continue. (They didn't).

5 May 1997

Appt today with Dr John at 1:15 and officially became a patient. He surprised me when he said that it would be possible to do the surgery Tue afternoon (5/13) or Wed morning (5/14) which would still fit in with my schedule of being out of intensive care before my husband goes out of town, which also makes it early enough that I don't have to cancel or reschedule any clients or speaking engagements

After some discussion, it was decided that I will need to go with the translab approach after all. Since my AN completely fills the auditory canal, there's the possibility they wouldn't be able to get all of it out of the canal, leaving open the possibility of regrowth. With my history of regrowth (of Morton's neuroma in my foot), that's not a wise course of action. So, my hearing will have to be sacrificed. A major up side, of course, is that the facial nerve will be visible so less chance of problems there.

7 May 1997

Today I got my surgery authorization number and had the pre-op tests - not in that order. Tue the report and request for surgery authorization got sent to HPG and I had to sweat it waiting. Meanwhile I made the appt with my primary care doctor for the pre-op test. Problem - Getting the tests done on Fri might make the test results come in to late and Dr Johnson isn't in on Thu, so the only time I could get fit in was this morning at 11am (I couldn't eat past midnight so I was really hungry by the time I got home at 2:30). By 10:15 I still didn't have that magic number and I needed to leave by 10:30. So, I called again. The girl said she'd never heard of an instance of getting this far and having surgery turned down, so go ahead and get the tests done. I took her at her word and went for it. When I called this aft about 4:30, they did have the number - hooray!

9 May 1997

In the mail today, I got some more paperwork to fill out and bring in on Mon when I have the balance test done. Though I filled out a small medical history on Monday, this one is a lot more comprehensive -- 22 pages worth. I also got an RX for Physohex shampoo, the most expensive out-of-pocket item for this whole thing -- $25. I've only had 3 five dollar co-pays to pay, so the shampoo is more than the medical expense. I hate the thought of spending all that money for something that literally goes down the drain, but I understand the necessity of it. Now that I've won the battle of who/where to go for surgery, I can again be thankful for the financial aspect of an HMO, I sure wouldn't have been able to afford this under the 80/20 type insurance plan.

12 May 1997

Some good news - this morning I had my last pre-op test which was one for balance - the ENG (Electronystagmography, test of the balance mechanism). The test involves some special goggles that go over the eyes with an infrared camera in them. They measure the eye movement while water goes in the ears. The water makes a person dizzy and that's how they tell the amount of dizziness. I had absolutely NO balance sensation in my affected ear. That sounds like bad news, but it's really good news because it means I've already compensated for my balance, which in turn means one element of recovery will be faster. I also went across street to hospital and did most of the preliminary check-in procedures, including having notarized a Durable Power of Attorney for Health Care.

13 May 1997

Surgery day. We (Dave & Mother & I) arrived about 8am and took care of balance of paperwork, then went to temporary room for awhile. That part was just a bore, nothing to do but talk and watch tv til time for surgery. Surprised to find that the whole wing (½ of 6^th floor) was for ANs and other ear/brain related things. Finally, about 12:30pm they took me in for shaving the area where incision was to be made and doing last minute preps. There were delays because the anesthesiologist had an emergency to take care of before me, but finally about 2pm surgery started. I think I must have been put out about 1:30pm, because that's about the last time I remember seeing the time.

There is no recovery room per se, you go straight from operating room to ICU. Dr John later told me that surgery was about 3 hours, though it was about 5:30 before Dave & Mother were allowed to see me. I do remember hearing Dave's and Mother's voices asking how I felt - of course they wanted to hear me say something so they could know first hand that it was safe to go home.

I was a little nauseous and vomited a some blood, but that was perfectly normal drainage. I remember being asked to smile and yeah! I could! - no facial nerve damage. I don't remember too much about rest of evening or next morning other than the few times vomiting blood.

14-19 May 1997 (in hospital)

Progressively felt better, had liquids and progressed to regular food. Dave was ok enough with my progress that he felt comfortable chauffeuring his sister to Vegas as planned. That worked out real well since it kept his mind occupied with things other than worrying how I was doing. He faithfully called every day I was in hospital, but it also left me with time to recover without being concerned if I was awake when he was there. Mother's such a good Mom that it didn't matter if I was awake when she was there or not. Thursday I made the change from ICU to a room (all rooms there are private ones).

Fri eve, the 16^th, around 7pm or so, I ended up with a migraine. Friend Richard M. had visited and he left about that time. I was starting the headache about the time he left, which is why I can manage to pinpoint when he was there. Anyway, at first I just thought it was a normal headache. As the evening progressed, it got worse and I eventually ended up sleeping with a washcloth and extra pain shots. Around midnight I think I realized just what a migraine was. I'd never had one before, and from descriptions I've read, I had a mild one - I'd hate a full blown one. By morning the pain was worse than ever and they sent me in for a CT scan, took blood, and gave me a spinal tap. I was in such pain that the lumbar puncture was nothing! Really, it wasn't as bad as I've envisioned. The injection to numb me was the hard part, but I was so bruised from shots, it was easy to get past.

I actually felt the migraine start to get better when they took the cerebral spinal fluid - the actual relief from pressure. They took 3 vials (about 3 tablespoons). The fluid was light yellow, about the color of healthy urine. I'm told that it's supposed to be clear like water, that the yellow indicates some blood. So, the blood was the culprit and things went better from that point. This had all caused high blood pressure as well so I was also put on high blood pressure medicine. I was also given some strong pain medication so I could sleep while the migraine went away. Sister Kay, and nephews Jeremy and David came about that time and had a good laugh as I started slurring my words as the medication took effect.

Saturday, after the spinal tap, the headache diminished to a more normal recovery type headache; and by Sunday it was totally gone. When Dr Stephan (internist responsible for hospital care) came for his morning visit on Monday he signed me for a late checkout so I could decide on "after lunch" or "after dinner", but by lunch time I was ready to go home so I didn't wait for dinner. I got home a little before 2pm.

23-23 May 1997

One thing that I started noticing in hospital, but am becoming more aware of: my taste is "off" and my TMJ is different. Nasty mouth a lot. Slowly getting most of my taste sensations back but salty tastes are still difficult (I love salt and miss the taste). Realize it's going to be awhile before I'm strong enough to cook so I called my pastor to request some casseroles etc for about a week. Mother had bought a few things meanwhile. The TMJ, which I've had for several years is back to the way it was. Over the last year or so, I'd had a new "click" in my upper right jaw. It seems to be gone all of a sudden - maybe that was the tumor, and not TMJ? In any case, my jaw is sore - like I'm been chewing stale gum for awhile - and I can't open my mouth as wide, though that's improving.

24 May 1997

Made two ventures out today. In morning Mother took me over to the park by the Rose Bowl, and we watched the Frisbee (dogs) championships for about an hour. Too tired to stay for more of it, but the temperature was nice for being "out". In the afternoon I felt a little bit of a runny nose. Since that was a symptom I was supposed to watch out for I called the doctor on call. I was fine, he said that if were cerebral spinal fluid, I would know - it drips like a faucet.

In the evening we went to a wedding at church. The reception was at another location. I didn't want to detract attention from the wedding couple and the tiredness made it easy to resist the temptation. It was a very nice wedding and I was glad to be able to make that part.

25 May 1997

This morning I went to church (but not Sunday School). After getting home, I made my first driving venture and went to the store to get milk. Mother rode with me to "make sure" I could drive ok. Since I prefer to turn my head while backing out, versus using the mirrors, that part was hard, but the driving itself was fine.

General health -- I'm feeling better day by day, but I see what the AN list people mean when they say that I will be tired for a few months. I'm stubborn enough to push the envelope, but I can sure tell when I'm doing to much. I asked for prayer for patience to get through that time.

Review -- On the incision, healing is going well. Mother took off steri-strips this week. (There are NO external stiches!) I still feel like there's adhesive there, but finally realized I wasn't feeling adhesive, I was feeling the fat "melt". (They used abdominal fat to pack the area where the mastoid bone was).

There are no more ear bones; since they weren't needed anymore I donated them for research. The way I understand, the hearing and balance nerves were taken to make sure they got all the tumor.

The facial nerve stayed intact and I had no temporary facial paralysis, though there is a very slight slurring of my words - that will hopefully improve.

On the strength, it will take time.

On the hearing, tinnitus has some changes. Most of the time it is the same as before -- sounds like "white noise" or the computer fan. When it's quieter, it sounds more like a babbling brook (poetic version), or the toilet running (realistic). Have also been noticing a brassiness of sounds, mainly music. Many musical sounds have a reverberation quality like the reverberation of a the bells in a bell choir. It's somewhat annoying. But the worst is that music doesn't sound right. I remember reading a similar statement on the list but it really hit me this morning listening to the choir: I won't be able to appreciate music as much. That made me cry.

On the hearing of voices, there's definitely a difference, and it will take time to adjust, but time will have to tell whether there will be quality or if it will be bad enough to fight the insurance company for a CROS hearing aid.

The most meaningful correspondence has been a 3 page letter from an acquaintance from years ago. When I was more active with the Los Angeles Live Steamers there was a gal from Arizona who came for lots of the major events. Though we knew each other well on surface, the nature of our mutual interest wasn't the type to know each other in a deep way. And we haven't seen each other for many years. A mutual friend told her about the surgery and the coming loss of hearing and she wrote 3 pages of encouragement. If I wasn't already upbeat about the whole process, that very thoughtful letter would have definitely started a change of attitude. "Babe" sure exemplifies the true meaning of friendship -- time and distance don't mean a thing!

26 May 1997 (Memorial Day)

Got more adventurous today. Brother Ken came over around 10:30 and I kibitzed while he put together a computer. Then, about 12:30, we went to sister Karen's for hamburgers etc. Got home about 4, then about 4:30 Dave and I went to the Live Steamers to ride trains and see friend Babe previously referred to. I was really tired when we got back about 7:30 but it was worth it.

27 May 1997

Dr appt today. Dr House told me I have no restrictions except what my body puts on me. And that I'm to come back in two months. I asked about a CROS hearing aid but the bottom line is that the hassle of wearing and upkeep, not to mention fighting to get the insurance company to approve it will far outweigh the 10%-15% hearing increase I would get. So, I'm going to concentrate my efforts on compensating the best I can with my remaining ear.

This is my last regular entry. I may or may not have further updates for changes of importance.

31 Jul 1997

Here's my synopsis (written Jul 25^th) for telling Dr John at my last follow-up . I consider myself 98%. My remaining symptoms:

Ear-neck still get a "stretched" feeling. It is more annoying than painful. Most of the time I can "tune it out", but on average of once a day (some more, some less) I take Ascriptin for it.

Back right quadrant of my tongue has a slight numbness (at least that's what I guess it is). Anyway, it affects texture of dry items (but not taste). For example, when I eat popcorn, it feels like I have a little bit of sawdust in there too, so that it feels extra dry.

The saliva in my mouth is weird. It tastes slightly metallic. Almost like there is a little bit of blood mixed in. Ever since I got all my taste back, I have continued to have this sensation. It's not unpleasant, but not pleasant either. I'll occasionally suck some hard candy when it gets particularly annoying.

I still occasionally side-step into door jams etc, but I assume that will be permanent. It's no different than the last couple years, and doesn't bother me any except for the bruises I sometimes get on my arms.

Ask about feeling (by touch) in scar. Is that short hairs growing out or scabs?

Tinnitus is back to normal white noise, with no more water running sound. The brassy sound of music is also gone. I do notice the lack of stereo, but have to live with that, and not being able to know "where" a sound is coming from.

6 Feb 1998

As I'm preparing this page for the Internet, I thought I would also give another update. I no longer have the taste disturbances. The tongue numbness and metallic taste of my saliva have disappeared so gradually that it is hard to say when I noticed that it was "gone". No change in balance issues, or the tinnitus. I have noticed that there is very short term memory loss. Everyone has times when they will go from one room to another and can't remember why, but those incidents seem to have tripled in my case. I also have problems with occasional words being "lost". From what I've read on the AN list, this kind of memory problem seems to be normal for brain surgeries of this type.

The "stretched" feeling is still around. I went to Dr John about a month ago, and he injected a steroid in the grand occipital nerve. That helped some around the top of the ear, but the face side still feels stretched. Worse when stressed or cold.

Mother's Day 1998

"Counting My Blessings One Year Later"

Wednesday is an anniversary of sorts. May 13th last year is when I had brain surgery to remove an acoustic neuroma. I have a lot to be thankful for even though I lost the hearing in one ear.

The first blessing is the fact that it was discovered in the first place. Though not uncommon, it's estimated that only 3% a year are diagnosed, which is why they can be quite large when discovered, as mine was.

The next blessing was also before surgery, because I was well versed in doing research on the Internet. By web searching, I found the best doctors in the country for the job were right here in LA. Plus I had the blessing of having insurance that would cover the entire cost of close to $50,000.

After surgery, my blessings continued as soon as I woke up and was able to smile. Many patients have facial nerve problems that take from months to many years to heal. Though I have some very minor nerve problems in the area around my ear, it is surface nerves, not my facial nerve, and is more of an annoyance than painful, with aspirin therapy solving the problem.

Mother's Day wouldn't be complete without mentioning the blessing of my mother keeping reign on me doing to much to soon. She did a ton of stuff to help me during the first of weeks.

Loss of hearing in one ear was only a problem for a few months while I got used to it. The blessing involved there is that I have normal hearing in the good ear. There are AN patients who have to factor in hearing issues when their better hearing ear is also the side of the tumor.

One of my faults has also been a blessing. You all know that I'm kinda hyper, to put it mildly. I just pushed to get better because I had to much to do to sit around feeling sorry for myself.

Another blessing involves the example my sister Kerry set many years ago when she was diagnosed with epilepsy, and that she carried on when finding out that her child would be born with spina bifida. She accepted these things as facts of life and has always been an example from whom others could learn - teaching her daughter to be the same way.

I had seen other AN patients experiences on the Internet which prompted me to keep my own diary. Faith in God was never credited as being part of the healing experience so I decided to learn how to make a web page so others could read my journal.

Having my journal on the web has turned out to be a blessing to at least two people that I know of. I have my web page address in the signature file that gets automatically added to my email or when I post messages to various genealogy news groups and mailing lists. Genealogists tend to get curious and check to see if you have the names you are researching posted on your web site, so many have seen my journal. Two complete strangers have sent me messages that reading about my experience has made them go to a specialist to get checked, as they had the same three symptoms. Like me, they didn't know that having hearing loss, combined with tinnitus and balance problems is a key diagnostic clue leading to an MRI for diagnosis of the tumor.

I believe that God used the example I had in Kerry, my hyperness fault, my knowledge of the web, and gave me a positive surgical experience so that others could learn from me. For the 20 years I've been into genealogy, I've often said that if the Lord would leave me good eyes so I could read microfilm, I wouldn't mind what else that got thrown at me. I may have a bad back, bad feet, and hearing problems, but I still have the blessing of being able to see well enough to do my research and I have excellent general health. So, one year later, I have many things to be thankful for.

August 2005 - BAHA, Yes!