What is an Acoustic Neuroma? It is sometimes referred to as a neurinoma or schwannoma. It is a benign tissue growth that arises on the eighth cranial nerve. The eighth cranial nerve is two separate nerves, one part associated with transmitting hearing and the other with sending balance information to the brain from the inner ear. These nerves lie adjacent to each other as they pass through the bony canal leading from the inner ear to the brain. This connective opening, called the internal auditory canal, is about one centimeter long, and it is here that the acoustic neuromas usually arise from the sheath surrounding the eighth nerve. The seventh, or facial nerve, which serves facial movement also passes through this canal, as do important blood vessels.
There are several surgical approaches which may be used to remove an acoustic tumor. My surgeon chose the Middle Fossa Approach. In this approach, the bone is opened above the ear and the bone overlying the tumor is removed. The middle fossa approach may be selected for small tumors with good hearing, which I still had. This approach is usually limited to tumors that extend out of the internal auditory canal no further than one centimeter toward the brainstem. Other techniques are used to treat acoustic tumors, one of those is the Gamma Knife option. This uses radiation to bombard the tumor to make it stop growing, or even shrink it. I considered this option, but could not live with a tumor in my head, even if it was not growing! So, I opted for surgery.
Now, the Diary:
Previous to September 1996:
I have had trouble hearing in crowded or noisy places for the last several years. My wife complained so much about my constant asking of "huh?" that I went to a Miracle Ear free hearing test in about 1990 or so. The test showed that I had slight high frequency hearing loss, in both ears, to be expected due to my job as a heavy duty engine mechanic, and my love for loud music. They told me that a hearing aid would not help at that time.
For the last 5 years or so, it was suspected, but never proved that I had off and on again sinus infections, which I attributed to my scuba diving. I would have severe headaches, go to the doctor, they would prescribe antibiotics and painkillers, and the pain would subside for a few months.
Experienced sudden hearing loss in left ear went to doctor who flushed the ear of wax, and told me it would be better soon.
October 1996: Went back to doctor, told him that hearing was still bad, and headaches were bad also. I had several severe attacks of vertigo. He prescribed antibiotics, and Dramamine, and said to come back if it didn't get better. Two weeks later, I went back. He referred me to an Eye-Ear-Nose-Throat doctor, who put me on more antibiotics, and prescribed Papavarine and Lipoflavonoids to increase circulation to the ear to clear the suspected virus.
Went back to EENT, he asked my health plan to schedule a MRI of my sinuses to check for infection and cause of pain. Had MRI, luckily I am not very claustrophobic. Was called the next day by the MRI center, they told me they made a mistake when doing the MRI and I needed to come in so they could redo it. At the time, I didn't realize that they didn't make a mistake, they found something (the tumor) on the MRI and wanted to take a second look. The second MRI was augmented by a Gallium IV to apparently outline the tumor. When I went to the EENT, he told me that I had an Acoustic Neuroma, and as tumors go, it was the best one to have. At that time, I thought I just had a bump on a nerve, *and*, with a little outpatient surgery, I would be cured. Boy was I in for a surprise!
Pointer shows location of tumor. MRI didn't scan well, tumor doesn't show up well.
The EENT tried to refer me to the House Ear Clinic, but my health plan in all its wisdom referred me to a staff neurologist who said "I don't know why they referred you to me, you need a neurosurgeon". I then was referred to a Dr. in Long Beach that is affiliated with the health plan. A friend who is an ICU nurse said that surgeon was one of the best in her opinion, so I relaxed a little.
I went to my first appointment with the neurosurgeon, who confirmed that I had an AN. He said that in rare cases, a viral infection will show up on a MRI appearing to be a tumor. So he had me wait three months and repeat the MRI. I started to investigate acoustic Neuroma, I went to the medical section of the book store and looked up all I could find. Several books gave graphic accounts of surgical procedures, one mentioned sub-occipital. So I looked up occipital, and found that it meant eye, and sub, which sounded like below or behind. So, I immediately assumed that they would have to remove my eye to get to this tumor!
I repeated the MRI, and the tumor was still there, actually increased in size a little. I went back to the neurosurgeon, who verified that it was larger, and told me that he did other types of brain surgery, not this type and said that I needed to go to the House Ear Clinic. This was the second time that I had heard this name, so I decided to push my health plan for this referral. On the original request from the EENT, he had written a doctor's name at the House Ear Clinic that I should ask for, so I did. At this time, I still thought that the surgery would be quite an experience, but I was not worried too much about it.
July 3, 1997:
I took my MRI's to the House Ear Clinic, and met with Dr. Brackman to discuss my case. He verified that I would need surgery, and mentioned Middle fossa approach and that he thought he could save my hearing. He said that my tumor was pretty small, and the surgery would be no problem. He handed me a little booklet called "a discussion of acoustic neuromas" for me to read. I didn't have time to read it then. I was sent to the surgery counselor, who said if I had any trouble with my health plan approving the surgery, that she would assist me in getting approval. She also gave me a flyer on the acoustic neuroma association, telling me it was a support group, and warning me that if I contacted them that there were people in the group who had surgeries many years ago before the current technology was available, and I shouldn't be discouraged by their horror stories, as the surgery is much better now. Boy, I wished I had paid attention to her warning!
July 4, 1997:
I woke up early, and started reading the booklet and literature that she gave me. The booklet scared the hell out of me! Talking about partial vs. total removal of the tumor, elevating the brain, disturbance of vital brain centers that control respiration, blood pressure, and heart functions. It said that if disturbance of these centers occurred, that often terminating the surgery will allow these functions to be restored! Once they are disturbed, however, they sometimes do not recover. That hit me like a brick! "Do not recover" means death, although it didn't say that explicitly.
I noticed the ANA had a web site, so I checked it out. They had a guest book, and asked if people would leave a message. So, I started reading the guestbook entries. My advice to anybody doing this, is to realize that the entries are from people who have had problems with the surgery, and the people who have had the surgery and had no problems don't even contact the support group, so you get a skewed view of the results. I was in a panic at this point, it was a holiday, so there was no one to call.
I registered for the mailing list of the ANA, and sent a message to the list detailing my fears. I then went to bed, but didn't sleep much. The headache that I had all day was so bad that I had to take a total of 4 Tylenol #3 tablets to dull it. I think the headaches are aggravated by stress.
July 5, 1997:
I got up real early, and logged onto the Internet, to find several encouraging messages from people who have had the surgery and had little or no complications. This cheered me a little. I then proceeded to download every piece of information I could find on the Internet about this disease, as well as several personal stories of peoples experiences with AN. This prompted me to start writing about my experiences today. I volunteer with the House Rabbit Society, an animal rescue group that rescues pet rabbits. I started cleaning the bunnies cages at about 7 a.m., had a really bad headache. The headache got worse, and an attack of vertigo left me laying down feeling like I was going to throw up. I took two Tylenol #3's, and a Motrin 800 mg. Within about an hour, the headache dulled enough and the nausea subsided. In the afternoon, I checked the mailing list again, and had one post from a person that had no problems with the surgery, and one post from a person who's father had an AN that turned out to be malignant, and has had several subsequent surgeries. Although the post said that he was one of only three recorded cases of malignancies, my panic is back. I have been reading reports of people who have had the surgery taken from a web site, and some sound like real horror stories. I just want to run away from all this, but I know that won't help.
July 6, 1997:
Didn't sleep much last night, arose at about 6 am and checked the email. More posts from people who survived the surgery and have recovered. I went to some friend's house to help them with a project, and that kept me busy for the morning. Went out to lunch, but had very bad headache, took more Tylenol #3, and an 800-mg Motrin. Made appointment with regular doctor for Monday to see if there isn't something else that will work with these headaches. Had panic attack in afternoon, after talking with a friend about the surgery and possible complications. It seems like talking about it makes the fear worse, not better. Decided to print out all the posts I received from people who had survived the surgery, and make a "hope" book to read when I feel panic. Went to bed early.
July 7, 1997: Monday
Called Rita, Dr. Brackman's nurse to ask questions about scheduling, and to ask about the appointment for a root canal that I have for July 21st. She said to get it done early or it may postpone the surgery even longer. Checked on disability insurance at work, got a short haircut in preparation for the surgery.
July 8, 1997 Tuesday
I went to work today, and stopped by the dentist office to request moving the appointment for the root canal up earlier. He told me to come in at 4:45 P.M.. TODAY. I had six injections of Novocaine, and he started work on it. At 7:45 P.M.., he gave up and told me that I would have to come back to have it finished. He was tired, and so was I. I was so disappointed, I do not want to go back for more injections and tooth drilling. I feel like I can't do this anymore. I want out of this life. I'm don't want to commit suicide, but I am beaten right now. I am going to take more Tylenol #3, some Motrin, and go to bed. I think things will look brighter in the morning, I hope.
Got two more messages of hope this evening.
July 9, 1997 Wednesday
Felt better this morning. Had to get up at 2 am and take more Motrin for the toothache (from the partial root canal). Not getting any list messages from the AN list, but got two more messages, one of hope and one from the person trying to get me to do radiation instead of surgery. Called Rita today, she faxed letter to me today, I faxed letter to my health plan so the committee could approve? the surgery. Won't find out until Friday afternoon if they approved it. The waiting is the worst part!
July 10, 1997 Thursday
Haven't heard anything about rest of root canal. Will go over to dentist office tomorrow to see when he can finish it. Thought I would never want to rush a root canal. Dentistry has always been extremely frightening to me, however this tumor puts a whole new spin on everything. Now, dentistry is no big deal. Virginia (my wife) is sick. I think she is worrying herself sick. I ordered new computer today, 266mhz Pentium pro, with all the bells and whistles. Will not be delivered until 7/31 or early August. Hope I have time to set it up before surgery.
July 11, 1997 Friday
Woke up at 4 am with terrible headache and tinnitis. Took aspirin. Am pretty scared this morning. Had nightmares about being arrested for no license plate on my truck? Don't know what that was all about. Went by dentist office, he said to come in tomorrow (Saturday) at 8 am.
July 12, 1997 Saturday
Showed up at dentist office at 8 am. He started work on my tooth again. At 11:15 am he said he was going to have to stop. Next visit he would start again. That is over 7 hours of root canal so far on one tooth. I was absolutely devastated when he said that. I told him that I couldn't do this again. It was just too much with this surgery hanging over my head. I started crying. He was very kind, as he is a personal friend as well as my dentist. He took his Saturday morning to help me with my tooth so I can have the surgery on time. I am very selfish, I didn't even think of the fact that he is doing this to help me on his own time. The tooth is very painful as I am writing this. Took quite a few Tylenol #3's, and it still hurts. Going to bed early, as soon as I feed the rabbits and check my email.
July 13, 1997 Sunday
Talked with friends about surgery, etc. Feel a little better today. Dentist promised he would call, but didn't.
July 14, 1997 Monday
Went to work today. Called insurance company again, no word on approval for surgery. No call from the dentist either
July 15, 1997
Called insurance company, no word. But I was assured that the person that had to review it actually was in today. Still no call from dentist.
July 16, 1997
Received a call from the health plan, Alice (my GP's nurse) said that she bugged the office, and got a verbal approval for surgery! I am going to send her a nice thank you card. I called Rita at HEC, and she scheduled surgery for July 29th! Finally! I have to go in at 8 am on July 28th, for tests all day. Then check into the hospital at 10 pm. Surgery to follow next morning. Sure hope I can get a little sleep that night! My wife scheduled her foot surgery for next Tuesday, the 22nd. She will be in OK shape to take care of me and the rabbits by the 29th.
Stopped by the dentist to make sure that the tooth is stable for surgery. He said no, its open, and must be closed before surgery. So, I am going in tomorrow night for canal filling and temporary capping. This is the root canal from hell. Already 7 hours of drilling, and more tomorrow night! He did say that I could just have the tooth extracted, but I don't want to give up all that work already! Maybe I am crazy. Rita told me that I could have no aspirin or aspirin related products after Friday the 18th. Hope this tooth doesn't hurt after his work on it. Things seem to be going fast now! Seems like not much time before surgery. I guess that is good. Less time to worry. Got my info in the mail from the ANA today. Read some of it, sounds scary.
July 17, 1997
Went in for root canal part 3, after an hour, the dentist said that the tooth would have to be removed. There wasn't enough left of it to save. I told him "Like Hell !!!!" I told him to patch it up for surgery and afterwards, he could remove it, fill it, or do anything he would like as long as it is after surgery. So he finished the root canal and capped it with stuff so it would be safe for the surgery.
July 18, 1997
Went to work, glad to have the root canal at least stabilized. Talked to Deanna at Dr. Brackman's office, they said to go to my GP's office to get some tests done. I had EKG, chest x-ray done.
July 19, 1997
Saturday. Went to St. Vincent's hospital to acquaint myself and my wife with the surroundings. Met a girl who's mother had surgery yesterday, and they wouldn't let her in to see her. Virginia and I got quite light headed thinking about all this.
July 20, 1997
Sunday. Cleaned up some of our paperwork and filed just in case. Had our wills signed by a couple of friends. Figure I better be prepared for the worst.
July 21, 1997
Monday. Had the day off, checked on cellular phones, bought one at Radio Shack. Wanted Virginia to have a cell phone in case of car trouble driving back and forth to the hospital. Checked on my new computer, it will not come until after I enter the hospital. Oh well. Went in 4:15 pm for physical exam.
July 22, 1997
Tuesday. Went to work in morning, had nothing to eat or drink for blood tests today. Took off work at 10:15 am, picked up Virginia, and went for blood tests and Virginia's foot surgery. Really makes me wonder how she could have a tumor in the nerve in her foot, and I have a tumor on the nerve in my head. REALLY bad headaches by 10 am with no meds. Blood tests didn't take long. Took Virginia to her doctor for surgery, stayed in the office and actually watched her surgery!. Saw her nerve tumor when they took it out. Don't know if this was a good idea, watching her surgery. Took her home, and headache dulled a little bit.
July 23, 1997
Wednesday. Woke up, took meds, headache went away. Read Melvin's story about his surgeries this morning. He had CSF leak, and two surgeries! His tumor was larger than mine. Hopefully my experience will be easier than his. I have the vague feeling that he is right, I should take time off before surgery. But, going to work this morning anyway. Tinnitis very bad this morning.
July 24, 1997
Thursday. Went to work, my position was given to another employee at 4 pm. Almost like retiring. Took home my personal stuff from work. Cleaned out my service truck. Some fear off and on during the day. My boss tried to cheer me up and help me to look at the positive side of this. It helped a little.
July 25, 1997
Friday. Went to work for half day in morning. Headache not to bad today. Took off at noon to take Virginia to doctor visit for her foot operation checkup. Panic attacks all morning. Took nap at 1 pm before Virginia's doctor appointment. Woke up several times with pain in chest, realized I was holding my breath! Apparently I am very scared. Took Virginia to doctor, that took my mind off of surgery for a little while. Updated this log in evening. Trying to think of all the stuff that needs to be done so I can be gone for a week or so, even though Virginia is going to be home each night. She probably will forget a few things, can't blame her, as she is frightened also. She has a feeling that everything is going to be ok. I kinda feel that way too, but I am still scared. Lots of talk on the AN list the last few days about side effects of the surgery. Real scary stuff. If I were smart, I would stop reading the list until after surgery. This tumor and upcoming surgery really makes you look at life differently. Really turns your value system upside down. Money is of very little importance anymore. The new computer that is coming is also no big deal anymore. Maybe I will be more excited after surgery. Sent my solar control system in for repairs a couple of weeks ago. The solar controller still is not back, so reinstallation and reactivation of the solar system will have to wait until mid August or later.
July 26, 1997
Saturday. Made last minute preparations so I can be gone a week. Got a handheld showerhead, and a shower seat so I can sit down in the shower if I am dizzy after I get home. Purchased a robe, and Virginia is going to get me slippers tomorrow. Mowed the yard, and charged up the camcorder batteries so Virginia can video me in the ICU. Hope they let her video me. Am very frightened today.
July 27, 1997
Sunday. Seems like a really bad dream. I think it will come out ok, but I still have fear. No really bad posts on the AN list lately. I read my "hope book" (some of the emails of encouragement that I have received, I printed out and stapled together). I also read some literature on acceptance that I have had for years. Friends are coming over this morning to chat for a little while. A string of earthquakes in So. California happened last night. Oboy. Something else to worry about. Earthquake during surgery? Chances are pretty small. But like one of the Star Wars movies said "Never tell me the odds!". The solar controller came yesterday, so I bolted it to the wall, knowing that I would not be able to lift it after surgery. Figured I could hook it up after surgery when I felt better.
July 28, 1997
Monday. Went to House Ear Clinic for tests. Hearing tests, hearing nerve tests, and facial nerve tests. The facial nerve test was the worst. Shocks applied to cheeks to measure facial nerve movement. They came up with strange readings, so they did it twice. Met with Dr. Brackman, then with Dr. Hitselberger. Both told me not to worry. We went home at about 2 pm. Then went to check into hospital at 8 pm. I was placed in a room, and given a gown. Virginia left at about 10 pm. They gave me a sleeping pill, then another one at about 11:30 pm. I slept for about 3 hours. Then I spent the rest of the time praying for protection. Sometime in the middle of the night I felt a calm come over me, I can't explain it, just finally the paranoia calmed down.
July 29, 1997
Tuesday. At 5:30 am they gave me a shot of something to relax me. At 6 am they had me take off all other clothing except the gown. The nurse put thrombo socks on my legs to reduce the chance of blood clots. At 6:30 they brought up the gurney to take me to surgery. As I was being transferred to the gurney, Virginia showed up with her mother. I said goodbye in the hall, she was crying. I must have been feeling the shot, because I told her not to worry. They wheeled me down a couple of halls and through some doors. The surgical nurse introduced herself, and said she would be shaving my head. I told her to make sure to shave off all body hair where they would be putting tape, as I hate having hair pulled out with tape. So she shaved a large portion of my stomach where they would take the fat to pack the incision in my head. The anesthesiologist introduced himself, and put an IV in my hand. After shaving my head, the nurse started gluing some plastic pieces around the area where they would operate. Another person was attaching electrodes to my face, and my chest. Then I remember being taken into the operating room, and they asked me to move onto the operating table. The next recollection was of being wheeled on a gurney into an elevator, but I don't remember being taken out of the elevator. The next recollection was of lots of cold white clouds in front of my eyes, then they would go away and I could see fuzzy peoples outlines, then more clouds, etc. Also felt cool water running from my nose down my face. I thought it must be a CSF leak. I found out later that it was an oxygen mask, the clouds were oxygen when I exhaled, then went away each time I inhaled. The cool water was condensation from my breath in the cold oxygen mask. I saw my wife's face, she was crying, I said my head hurt. That was the mother of all headaches! I don't remember much else about the rest of Tuesday.
July 30, 1997
Wednesday. Oxygen mask was taken off sometime before I realized it was Wednesday. I had orange Jell-O for breakfast. Butterscotch pudding and orange sherbet for lunch. My head hurt a lot. They would give me an injection of a synthetic morphine, but it didn't take away the headache. Just dulled it down, and made me sleep. Then I would wake up, and they would give me another shot. I was hungry, so ate all the food they gave me. The nurse tried to help me fill out the food menu for tomorrow, but I couldn't think. So she just filled it out for me. The worst part of Wednesday was the removal of the nasal-gastric tube. Very painful, but only for about 10 seconds. They had inflatable cuffs on my legs that would inflate and squeeze my legs for about 30 seconds, then release. The cuffs did this every 5 minutes or so all the time I was in the ICU.
July 30, 1997
Thursday. Another day in the ICU. They took off some tubes each time they came in. Another day of shots. In the afternoon, they took out the IV and the catheter. The removal of the catheter was not as bad as I had imagined. When they deflated it, it just kinda slipped out. The worst part was that they had taped it in place on my leg on top of all the hair. I removed the tape myself, they were pulling it off too slow. I just yanked off all the tape (and all the hair). I was then transferred to a regular room in the afternoon.
August 1, 1997
Friday. Still bad headaches, more shots, and started giving vicodin pills. Vicodin helped a little. Tried Fiornal, and some shot for migraine headaches, but neither worked. Had a lot of visitors on Friday. They took off the bandages this morning. Got my first look at my head when I got up to urinate. The incision was closed with staples, and the incision is a large question mark shape. Too bad it isn't Halloween, I would look great as a monster at a party!
August 2, 1997
Saturday. Same as Friday. Went for a walk around the nurses station, very dizzy, but able to move ok. Had many visitors today. Finally had to fake sleeping to have them leave. Visitors are very welcome, but somewhat tiring. Was able to select tomorrow's food menu myself. The doctors came in each day to check my progress. They seemed very upset about the headaches. Hearing went away in the left ear altogether today, but they think it will come back.
August 3, 1997
Sunday. Hoping all day to get released today, but because of the headaches they kept me until Monday. I visited a little with one of the other AN patients for a little while during one of my walks. I started walking more around the sixth floor of the hospital.
August 4, 1997
Monday. Went home at about 12 noon. The ride home was a real experience. Luckily I have straps to hold on to in my 4x4 truck. I held on tight for the entire 1 1/4 hour ride home. It was a recording breaking heat day in Los Angeles, over 101 degrees. When I got home, I walked into the house, and barely made it to my recliner in the living room. As I sat down, my vision started narrowing like I was going to pass out. I sat in the chair the rest of the day. Headaches were still really bad, but controlled with Motrin, Tylenol with Codeine, and Feverfew, a herb remedy I read about on the AN list. Slept only about 1 hour all night. Started crying in the afternoon, for no reason. Only my right eye cries, the left stays dry. Must be some slight facial paralysis, but I can still smile. My wife says my dimple on the left side is gone.
August 5, 1997
Tuesday. Felt ok in the morning, so I went to visit some friends for an hour. Then I went to my work to show them my incision and staples. Then came home, and set up my new computer. Worked with the computer for about 3 hours, then went out to lunch. Then went shopping for computer scanners at two different stores. At the second store, I realized I should go home. When I got home, my temperature was at 100.4 degrees. So I called the doctor, and he said I would have to take it a little easier than I was. I thought if I just ignored this whole thing I could get on with my life. I realize now that I have to take it a lot easier for awhile. My temp came down below 100 degrees in the evening finally.
Have had problems sleeping, seem to wake up every two hours or so with a nightmare. Have to stay awake for an hour or so otherwise the nightmare comes right back. Asked on the AN list about the nightmares, and many people had the same experience. A few people said that elavil helped with the nightmares. They also said the nightmares were caused by the steroids given while in the hospital.
August 6, 1997
Wednesday. Took it real easy all day. Didn't go anywhere, the only thing that I did was update this log, which I hadn't done since July 28th. This is the first day that the headache has actually almost gone away. What a relief!! I was starting to worry that I would have to deal with these headaches forever. Started crying again this morning. Don't know why, just real sad. Emotions are not as controlled as they were before surgery. Still no hearing in the left ear at all. If that is all I have to give up, I can deal with that.
August 7, 1997
Thursday. Felt a little better today. Went with wife to her doctor to have her stitches removed from her foot. (from the removal of a tumor in her foot) All went well with her.
August 8, 1997
Friday. Starting to notice facial paralysis. Left side of face feels numb, and the eye won't close when blinking. Met with friends in morning.
August 9, 1997
Saturday. Facial paralysis is getting worse. Left eye is dry. Went to meeting with friends in morning. Drove my car for the first time on normal streets. Went shopping for parts for solar system after that. Rested.
August 10, 1997
Sunday. Encountered problem with left eye today. Eye burns when putting in re-wetting drops. Bought tube of Lacri-Lube to put in eye at night. Helped some. Going to doctor tomorrow.
August 11, 1997
Monday. Had doctor appointment at House Ear Clinic. They removed staples, and said I was doing fine. They prescribed elavil for the sleeping problem. I thought removal of staples would be uncomfortable. It was no big deal, almost couldn't feel him taking them out. Went to visit my mom later in the morning. Needed to rest most of the day.
August 12, 1997
Tuesday. Slept through most of the night! No nightmares! Went to visit friends. Finished installing repaired solar panel controller so batteries could start recharging. Rested the remainder of the day.
August 13, 1997
Wednesday. Having problems with dry eye. Called doctor to see if something can be done. Appointment for 8 am tomorrow. Went to electronics store to purchase a scanner for my computer.
August 14, 1997
Thursday. Visited friends in the morning early. Went to doctor to see if something can be done about the dry eye. He referred me to an opthamologist. Then went to the in-laws house about 30 miles away for a few hours. Went to the opthamologist's appointment at 2:15 pm. At about 3:30, became very dizzy and sick. They put me in a place where I could lie down for awhile. Finally saw the opthamologist, who just gave me some over the counter eye drops. Had the same result as others. Eye burns with drops. Only relief is from Lacri-lube .
August 15, 1997
Friday. Felt better this morning. Going to go with my wife to her doctor appointment for her foot, just to get out of the house for a little while. Then came home to rest.
August 16, 1997
Saturday. Went to visit sister and her husband at my mother's house. Adopted out Ernie the bunny to Jeff and Sandi Gwinn in the afternoon. My energy level seems to be improving!
August 17, 1997
Sunday. Had friends over to visit in the morning. Went to a meeting at 10 am. Moved Houdini the bunny into Cadbury the bunny's room. They are not getting along yet. Might have to move Houdini back to his area in the garage overnight.
Moved Houdini back to the garage, Cadbury didn't like him at all.
August 18, 1997
Monday. Virginia (my wife) went back to work today. This is the first day I am on my own since the surgery. Went to a meeting in the morning, then went out to breakfast. Drove my car, and did quite well. The big problem is when I turn my head to look behind me, when I want to change lanes, and turn my head back forward. Mel described it as being in a fishing dingy, I can't think of a better description for it! Came home to take a nap afterwards. Set up my new scanner in the afternoon.
August 19, 1997
Tuesday. Went to a meeting again in the morning. It is a full moon, and the drivers on the road really are crazy! A person pulled out right in front of me, I had to change lanes fast. Scared me a little, but I recovered control ok. Went out to breakfast. Came home and took a nap. Cleaned up the house a little, and rearranged some of the clutter. Scanned pictures and sent them to my sister. Starting to feel better and better. I am sleeping through the night now, with no nightmares!
August 20, 1997
Wednesday. Went to a meeting in the morning, and then came home and took a short nap. Went for a walk around my neighborhood, probably walked about a half mile! I was pretty tired after this walk, but it felt good that I can actually walk without hanging on to someone or something. I am really starting to notice improvement now!
August 28, 1997
One week later. Improvement is much more noticeable now. I have been driving for the last week, and walking regularly. I no longer need a nap during the day, and can sleep through the night without problems. I still sleep in a semi-sitting position, as lying prone seems to increase the pressure in my head, and causes headaches. Otherwise, the headaches are gone, and I have no need for painkillers anymore. I cannot wait to be able to sleep lying prone so I can sleep on my sides as well as my back. The dizziness is much improved, and is getting better all the time. I am so grateful to everyone who helped in my recovery.
September 15, 1997
Energy is almost back to normal, and no headaches! I read something about some people having onset of headaches months after the surgery! Hopefully not going to happen to me. Have been sleeping prone for about a week now, and no ill effects. Dizzyness seems to come and go, usually I can tell how the day is going to go when I get up in the morning. If I get up real dizzy, that seems to be how the day goes. Its not totally disableing, just very disconcerting and requires me to take extra care in my movements. Doctor appointment on the 17th, and I have a list of questions to ask him. Otherwise, I haven't returned to work yet, its kind of like being retired! I like it!
September 27th, 1997
Just returned from a trip to our property in Northern California. Mowed about three acres, and then started cutting more roads with my bulldozer in the hillside on our property. The bulldozer started making strange sounds, so I spent two days removing the engine looking for a problem. Doing this was a bit much, but I was successful in removing the engine. Sometimes the operation seems like just a bad dream, but then I feel the numb side of my head and realize it was real. The drive was 10 hours each way from our home in Southern California to the property. It was very tiring.
October 27th, 1997
Had a setback over the last weekend, went to step over a short fence, caught my foot and fell onto the fence. Fell real hard, and bruised myself up pretty good. This scared me, I do not know whether this was balance related, or just one of those things that happen. Since then, I have been noticing some balance problems. I also have a vague feeling that something is not quite right, but it could just be a cracked rib, and lots of bruises. And pulled muscles from trying to keep from falling. I picked up my hearing aid two weeks ago, and today I am going back for a checkup on how the aid is doing. It seems like after I have had it on for about 4 hours, it drives me nuts and I have to remove it. Then, after a short time, not hearing drives me nuts also, and I put it back in. They said it would take some getting used to, and they were right! Everything sounds like it is in a tin can with the hearing aid on.
November 21, 1997
Have been back to work for three weeks now, and I am having basically no problems since my employer has modified my work duties to allow me to attain age 50 so I can retire. Last Saturday, I awoke to the sound of running water. Checking around, I found that I had a pipe burst under the concrete slab foundation of the house! And my wife invited all the relatives to Thanksgiving dinner!
I am back to near normal as far as I can tell. I still have a little unsteadiness occasionally, but nothing major. I am pretty satisfied with my outcome. I am getting used to the hearing aid, I actually forgot I had it on and jumped into the shower with it on the other day. I am starting to get back feeling in the side of my head where the incision was also.
February 22, 1998
Sorry it took so long to update this log. I have since decided to retire from work in May, and have been very busy moving to Northern California. The only effects I notice from the surgery now are a diminished energy level compared to before the surgery, and an occasional unsteadiness sometimes. The energy level is getting better, and I hope one day to return to my normal "manic" lifestyle.
I went to get a haircut the other day, as the side of my head is no longer sore like it was when I first noticed return of feeling in my scalp. I did experience post surgery depression for a month or so in December. But it lifted, and I was able to tolerate it because I found out that it was normal after reading discussions on the AN mailing list. I was able to help another AN patient (that I met on the mailing list) through her surgery, which was a great reward to me. When I visited her in the hospital, I became very grateful for my recovery. She is doing fine also.
Great news! For the most part, I have returned to my "manic" lifestyle! My only real symptom left is a diminished hearing in my left ear and some unsteadiness in my balance. I understand this is because the tumor reduced blood flow to the inner ear, and damaged the nerves. This past two weeks, we moved 700 miles north to Northern California, (two trips of personal belongings, eight pet bunnies and two cats), installed 900 square feet of Pergo flooring in our new house, painted both our new house and the old one, mowed 3 acres twice, installed a new fence at our rental property, etc. I am really blessed to have made such a good recovery from my surgery.
Life is really great! I finished a 16' by 40' addition to my barn to mount my solar system. Its supposed to rain here tonight, then again thursday, then again saturday. I am ready for the rain, I could use the rest. I am finding that my hearing in my left ear improves when I do not use the hearing aid. I imagine that the brain looks harder for signals when they are fainter. Having compromised hearing in one side has been a challenge, I imagine how difficult it must be for those who lose all of the hearing on the AN side.
Have resumed ocean diving! Since I am living now in the Pacific Northwest, Abalone dinners are a real treat! Diving has presented almost no problems from the surgery. Also I purchased a boat, and I was concerned that the motion of the ocean would cause me to be unsteady on deck. That has proved to be an unwarranted concern. Apparently the unsteadiness from the operation (removal of the balance nerve) has allowed me to become accustomed to the movement of the boat without getting seasick. Gratitude is a major factor in my life now. Its really good to be able to experience all that nature offers.
I recently figured out that I should have taken a disability retirement instead of early retirement at age 50 from my job. I can no longer do the type of work I used to do due to the loss of the balance center on the AN side. I think my pride caused me to not admit that I may have some disability from the tumor. But reality is sinking in.
I just had my 5 year MRI check for tumor regrowth and it is clear, no tumor! The whole AN experience just seems like a really bad dream now. I am having a great time fishing, crabbing, and working in my new workshop. Life is really good. My hearing has improved, not back to normal pre-tumor, but not too bad anymore. Still have the tinnitus, always will I guess.
Note: I will continue to update this log, with my progress when there is significant improvement to report. If you have questions, or just want to talk about Acoustic Neuromas, email me.
Bob Taylor (firstname.lastname@example.org) (remove the nospam from the email address, I put it in there to stop the internet robots from harvesting my email address for spam)
Back to the AN story page
Back to Bob's home page