The following is a log of my experience with a failed stapedectomy.
Three operations and five years of living with this mistake is logged within this document. Scrolling to the bottom you can read the end result and my recommendation for anyone considering this procedure.
Wed July 11th 2012... Ogden Utah
What’s your name?
Blah, blah, blah, blah…. Well we’re going to have you go to sleep now.
The next thing I remember is being very groggy in the operating room and hearing people talk to me, but I am barely able to respond. I am wheeled out into a recovery room where they still are trying to have me respond to simple questions and become more alert. My throat is hurting back deep on the left side, my head is very groggy and is spinning. I have no idea how long it is before I am able to take a little sip of water, someone tries to help me sit up but I can’t take the change in position and fall back over with the room spinning like crazy. It is making me feel very sick and I have been told all of the color leaves my face… so I just lay still, not moving my head at all. Eventually the spinning calms down and I am able to move more upright but very very very very very slowly!
I have a small cup of water, then, I think a small cup of chicken noodle soup. The warmth of the soup is very soothing on my sore throat.
My head does not hurt much but feels tight…. It is the bandages that are wrapped around my ear and a cap that keeps everything in place that makes for the squeeze, extra pressure on my head that is not terribly uncomfortable.
I do not remember how long it took me to come out it enough to have the water, juice and the soup.
I was sort of nauseous, and definitely dizzy. Eventually I was helped back into my street clothes and wheeled to checkout and then went back home for recovery.
I was eating very lightly, crackers I think, and cranberry juice. I was hungry but did not feel very good.
I threw up….. luckily it was mostly liquid and not yet acidic from being in my gut for a long period of time. I felt much better!
That night was spent upright in a recliner chair, sleep was here and there, I didn’t feel to good.
Thursday July 12th …. Mostly sleeping. Walking was uneven and crooked
Today is Friday the 13th of July, two days after the operation.
My head is still spinning quite a bit. I feel like I’ve been put on a barstool and spun around, my eyes feel a little loose in my head. Something kind of like the game where you put your head on a bat and spin until you can hardly stand then, take off running for a target. You cannot walk in a straight line.
Not too much pain, sometime a sharp crack or jab in the affected ear.
Mostly I am just tired and dizzy. Yesterday was worse and I slept most of the day, similar to today but without very good thought processes. Dry mouth and a metallic taste after the surgery.
The operation was uneventful as far as I can tell because I do not remember much of it. I must state that the hospital was the most efficient/modern that I have been in, or visited, excellent use of computer systems for tracking patients and check in etc. Plenty of rooms for patient recovery and seemed like quite a few operating rooms for surgeons with privileges.
The tinnitus in my left ear, which was operated on is probably two notes lower now than originally before the operation.
In my right ear… I’m not sure if the tinnitus is at a lesser volume or not? My head is just not normal at this time so further thoughts on that at a later date when my mind is working better.
All in all recovery is slowly coming along and I sleep quite a bit. I walk slightly sideways when I don’t mean to and am unsteady whenever I have to move my head in any direction at all.
During the night I woke up with a pretty serious bought of vertigo… it takes a lot of concentration to get over the spinning enough to be able to function and do anything. Misery!
The pills I have been given for the vertigo seam to work but there is a lead time for them to have an effect, so anticipate needing them on a schedule those first few nights.
Sat July 14th…. AM the tinnitus is not very loud in my left ear but while sitting here slightly tilted of head…. I almost fell down while typing that last sentence! I felt/heard a tiny little pop and became very dizzy and could not stay upright, even though I was already in a reclining position on the bed!! (Another round of vertigo!)
Sunday the 15th…. My mind is still a little behind by a second or so. Not too much pain in the ear but the medications I have been given are making me a little slower and dumber… though I am not taking much of them. I need to get my mind back into a quicktime response mode. This walking around half stupid sucks as well as the screwy balance thing where I can get thrown off by a very small slant to the sidewalk or path. Sitting still seems to be the best way for my mind/body to behave normal. But I must note that the fullness of the ear is no longer present so that is a good thing. Before the surgery I would try to pop/equalize my ear without any luck. Now it feels a little more normal without the constant feeling of fullness. But, I can feel the packing in the ear canal which is just a different kind of pressure in my ear.
I am waking up in the middle of the night being dizzy as well as having very funky dreams. For that I am taking a half of a pain pill before sleep, it seems like the nausea pill and the vertigo pill make me extra dumber. Oh, and the sound of blood flowing through the ear has gone away. Before the surgery there were times when I might bend over or stand up and I would hear what seemed to me like blood flowing through the veins inside my ears for a few seconds…. Hasn’t happened yet, even in the ear that was not operated on!
Tueday July 17th…. Went in to the Dr. for a follow up. The operation was on the 11th… I then had the major bandages on my head removed on the 13th and now on the 17th I go in for partial removal of gel packing that is in my ear. I was actually getting around fairly well on that day still sleeping a lot but feeling pretty good about moving about without particularly extra concentration on what I was doing. Slightly sideways walking.
At any rate that was before the doctor removed the gel packing from my ear. Almost immediately I began to get hot and nauseous, then I felt like I was going to fall over even though I was reclined on a seat with my head tilted back. The room was spinning wildly with even the slightest movement of my head, it was horrible. They helped me into a wheelchair and then wheeled me into a second room to recover from having the packing removed from my ear. The doctor broke an ammonium capsule to help me clear my head and someone gave me a shot in my butt for the vertigo. A horrible little experience as I look back on it now. I think it might have taken about an hour for me to recover enough to be able to walk outside to the car to leave.
(No I was not driving)
Sleep is what I seem to do most in this recovery period. I’ve decided to get off of the pills as they just make my head a jumble of slow moving thoughts and a loss of coherent patterns. I take only 1/2 of the pain pill during the night when I wake with an ache in the operated ear.
I think each day is a little better with my ability to concentrate coming back. Walking around is somewhat disconcerning because as I walk my eyesight bobs about a little with each of my steps. In other words my eyesight is blurred just a little when I walk due to the jarring pattern of my footsteps. If I really need to read a sign or pay particular attention to, say a car coming down the road at me in the crosswalk, I have to stop walking or moving and concentrate intensely on the problem that I am addressed with.
Thursday July 19th …
I fly back to Seattle. Doing much better, I hardly ever take any medication. The flight was pretty bumpy and the passenger sitting next to me might have thought I was just a little bit nuts. There were about five or six times during the flight where out of nowhere I would suddenly/quickly reach out and grab something to steady myself when my head would give me the sensation of tilting and spinning and beginning to fall. (Vertigo)
Friday the 20th … OK, mostly sleep, still feels like my mind is not in sync with my body.
Sunday July 22nd … Dizzy
Tuesday July 24th… OK Plus or minus. Even drove to the park and did a few errands.
Wednesday the 25th… Feeling pretty good during the late morning when I got up. I took my shower and got cleaned up. Cleaned the exterior of my ear with a cotton swab. I then went outside and was picking up garbage around the apts. But I was getting progressively dizzier and dizzier. After eight or ten minutes I couldn’t even walk straight… so it was back to bed for me. I tried looking up on the internet vertigo symptoms and recovery times for a stapedectomy, I found something called the “Epley maneuver”. A positional maneuver to clear calcification crystals out of your inner ear or something like that? I was just too dizzy to be able to be able to do it successfully, so mostly I slept all day and tried not to move my head!
Thursday July 26th – Saturday 28th….
Rested, walked about, but not to far. My head is still dizzy and the disconnect that I have with my eyes seems to have returned making any walkabouts very tiresome and I am in need of a nap afterwards. Needed to take a few of the vertigo pills several times but other than that I try not to medicate.
I know that everyone is going to be different on how they react to this surgery but let me warn you!
This is not as simple as it may look from reading about it on the internet!
It can mess you up! I thought maybe a week and I’d be back to normal, or at least doing normal things like walking straight! Almost three weeks later and I still cannot think straight or concentrate like I normally might. Typing this report I am making mistakes all over the place, then I have to go back later to correct the errors as I read through the text a second or third time or forth time. My vision is fine IF I am sitting perfectly still. But that is not how humans work, we are always moving our heads about to see in a different direction, even breathing makes your head move and any movement of my head makes me a little bit dizzy. I have a little bit of tinnitus in the operated ear…. It seems to have gone up in pitch. Every once in a while I feel a small pong or splonge in my ear and my senses go crazy….. immediate vertigo for just a second or so. This seems to mostly happen within a few hours of waking up.
I really need to do some of my work on the computer but it is almost impossible to concentrate and I’m afraid of screwing up work that I’ve already done.
Mon July 29th... The day was decent, thinking pretty well, a little tired but seems like things are improving?
Then during the early evening I was lying down on my back on the couch watching TV. The phone rang and I rolled over onto my right side to pick up the phone from the floor… immediately… horrible vertigo! Somehow I got back onto my back and just lay still until things felt better.
I did develop a pretty bad headache and needed to take pain and nausea pills.
Tue July 30… Slept late. Had a little trouble getting up… it just takes very slow movements to get upright. Did pretty much nothing for the rest of the day and then during the evening I needed to go out. I drove but it required extra concentration, the motion of the vehicle was kind of messing me up. I found it very hard to look sideways while moving forward and not become disoriented. I am definitely not liking these changes in my physical well being that I am experiencing from having this procedure done.
Wed Aug 1st… The morning started out with my being very dizzy.
I have a technique of getting up by very slowly rolling onto my back and then sliding upright with the use of pillows bunched up under my back and neck. At any rate got up rather late. Went out for lunch and then a short walk at the beach. It was a very nice day here in Seattle. I did have half a pill at lunch and was feeling pretty normal by the evening hour. An interesting development this morning was… that I was occasionally making myself have minor vertigo episodes by swallowing. I could actually become more dizzy just by swallowing?
Thur Aug 2nd… A little bit worse this morning. I even tried to sleep most of the night on my back to see if that might help with the morning waking up and being disoriented. Went for a short walk and the motion of my head while walking made things worse. I came home and took a nap. Lying on my left side, (same as the operated ear) I noticed that symptoms were at their worst and I would definitely get worse vertigo symptoms when I swallowed while lying on that left side. I’ll try to sleep on my right side tonight. The pressure in my ear seems to have been a little more than the day before when it was almost normal in the evening.
Fri 3rd… Last night I added a few extra eardrops at bed time and slept on my right side. Awoke with a little dizziness and my walking seemed slightly off balance. I am beginning to think that I might have an infection in the ear. I’ll try to be more observant of symptoms. Called the doctor again and he said that “I am just still recovering”.
During this morning and mid day my balance seemed to be off quite a bit. Some slight dizziness and no major vertigo episodes. Did need a nap this afternoon. By early evening I was feeling quite normal when compared to so many other of these recent days. I can hear muted sounds in the operated ear? (TV up very loud to a level of 100 compared with my past normal hearing level of 36) I have been able to hear slightly for a few days but it does not seem to be getting any better??
Sat Aug 4th… Once again I added an extra drop of ear solution before sleep and tried to sleep on that opposite side of my head so that the solution would stay in my ear. Woke up sort of OK but was off balance with just a little dizziness while walking. Today is going to be very hot so that might have an effect? Not to bad today, with no noticeable improvements. Later during the evening I noticed cracking noises in the ear, no pain, just unusual noises.
Sun Aug 5th…. It’s getting easier to get out of bed in the morning. I find that the dizziness is less and I am much quicker to get my bearings when I first wake. Motion of my head rotational side to side is not making me completely nauseous any more, just a little disoriented.
Most of today was a little disoriented, kind of like being just a little bit drunk. Definitely can associate this with movement of my head. Walking or whatever it is that you do moves your head and I get this drunk sort of feeling until I stop moving and then my head slowly clears up and I can think more normally, and concentrate and be somewhat as I used to be before the procedure.
Mon/Tue 6th/7th…. Mostly uneventful, a little bit unsteady on Monday… then by the end of the day on Tuesday I was feeling pretty normal. My head felt rather clear and I wasn’t so off center and tilted of balance.
Wed Aug 8th… Back to the partial feeling like I am half drunk. Unsteady in my walk and I need to concentrate harder on getting things done. Movement and motion is affecting me more today than yesterday.
Thur Aug 9th…. I really hate this! Anything I do that moves my head causes me to be off balance and a little dizzy. All I have been doing for a month is hang out doing nothing but sleep and then sleep some more. My body is not accustomed to not getting any exercise! Walking is not enough and walking is bad for me with this condition because when I walk my head moves about and I become more off balance and brain scrambled. Things are not going as I expected them to. I am beginning to think that there was a mistake made in the graft seal part of the procedure in my ear… as I am not getting better after a month of healing. My hearing in the ear is still very muted? But I am able hear some sounds that are very loud. I am worse in the morning after an evening of sleep, even though I have taken to propping myself up with pillows and blankets to try to stay somewhat upright during the night. I can also feel the vertigo effect when swallowing or yawning. Not all of the time but it is more than just occasional. Especially bothersome in the morning. Not sure what it is I should do?
Fri 10th…. Same situation in the morning, with some disorientation and dizziness while walking. Went to the beach and went for a short walk, I felt almost OK while reclining in the sun and not moving about but walking is motion and motion is not my friend these days. Even the car ride has an effect on my balance. Later in the day I washed and waxed the car. This led to a situation where I needed to go up three flights of stairs several times… I did so quite quickly and as smoothly as possible, which felt good in my legs. The first time I’ve done anything other than walk for a month. I tried to be very smooth in my ascent/descent while getting a little bit of a stretch going in my legs by taking three stairs at a time. Surprisingly I found no more discomfort in my head during the more rapid stair climbing than I did when just walking up the stairs.
I did feel somewhat better at the end of this day, more than I have in several days.
Mon Aug 13th… Though I went to sleep propped up, I awoke laying on my afflicted ear. Last night the pressure in that ear as I went to sleep felt relatively normal but this morning it seems to be kind of full. The tinnitus is still there but at a lower tone than was originally present. The unsteadiness in my walk is definitely still here and I can feel my head sort of spinning when I swallow. I have also noticed that the text I write is not up to par and I need to frequently go back and correct mistakes that I did not notice as I was writing the words. Indication that this is affecting my brain skills more than I was thinking it had. After about an hour sitting up in bed, the pressure in that ear feels better but the vertigo sensations are still just as bad as when I awoke.
I wrote a letter to the Dr. from Ogden telling him of my concerns that things were not right and how much worse the vertigo has become… I’ll just have to wait and recover.
Tue Aug14th… Talked with the doctor again yesterday and he seemed to have no real concerns with my progress, so I’ll just keep on. He did suggest a motion sickness drug Meclizine, I purchased some at Safeway 25mg tablets, and took two in the afternoon, then two before bed. I had the hardest time getting out of bed this morning! I had woken up, pressure in my ear was feeling fine, but I could hardly open my eyes, I eased myself into a more vertical position, to be more propped up, but it was very hard even to open my eyelids, they were just so very heavy. Today is a day of more than usual unsteadiness and loss of balance control. Pretty much just hanging out on the couch today with a couple of short walks. Note to self… meclizine is a very effective sleep aid! Hearing in my ear was not happening this morning but is back to being very muted by afternoon.
Sat Aug 18th… I really hate being like this! I still cannot walk straight, I still cannot think straight, I cannot exercise like I need to. And, I cannot work as I need to! Monday I think I need to go and get another opinion on how things should be going as to this recovery. Hearing in the ear remains muted. Pressure varies depending on… who knows what. Tinnitus is sometimes at a higher pitch at the end of the day. My sense of taste has still not completely recovered (everything tastes like rootbeer), and I cannot stand on one foot while closing my eyes without falling over. Usually I fall to the right. The operation was on the left, if that makes a difference. I feel best at the end of my day… after being upright all day. But most of the time I feel half stupid because of the effect of motion on my head making me feel like my head is spinning and it is very difficult to not have your head bob and sway as you walk etc. At any rate I hate it!
Tue Aug 21st…. Yesterday was not such a good day. All I did was drive to the shopping mall and then a drive few miles more to a health facility to try and find out some information for a recommendation of a doctor locally. When I got home I was going to try to do a little work on the computer but I was too worn out and took a nap, then just watched TV not wanting to do much more than sit and be a vegetable. There was a feeling of fullness in my ear. Last night I had sweats, not to bad that it drenched the sheets, but I thought I should start recording these occurrences as they might have some significance and I have not put this symptom down in this post/journal in the past. I also woke with a headache and some vertigo symptoms. Not bad but still not very much fun. I still have little surges sometimes when I swallow. I think that I had no real noticeable tinnitus this morning when I first got up, but I do hear it now? I’m not really sure so I’ll try to be more active in recording things immediately.
Wed Aug 22nd… I woke up this morning with a very dry mouth, slightly dizzy, very muted hearing, with light vertigo symptoms and a light headache. Should I yawn it gets worse. The tinnitus is present at a higher pitch, similar as my unoperated ear. And I am making many multiple mistakes in the short writings that precedes this sentence. Last night was relatively good as I went to bed, ear pressure was seemingly normal, although I really don’t know what normal is any more. This morning the pressure feels light. At times it feels like I have a light electrical current in my head, very light but a feeling similar to putting a nine volt battery on your tongue.
Fri Aug 24th… Mornings are definitely worse for my conditions as I begin to feel somewhat normal at the end of a day. The late evening is when my brain feels most free of the numbing effects of the dizziness. My doctor sent me an e-mail indicating that he was going to send me a prescription to try to alleviate some of my vertigo so I’ll report on that after trying the prescription. At any rate my balance is still off. It’s like when I go to tie my shoes and I fall over as I lose my balance… I am like that all of the time.
If there is a slope to the sidewalk, I might tend to end up walking down the slope even though I was meaning to just walk across it. The pulses of vertigo can come on with only a swallow, and almost always often accompanying a small burp.
This morning I tried a test of my hearing. Using an ear bud headset I listened to a song on the computer. I used the same ear bud, just switching ears for this test. Unoperated side… I can hear at volume 1 (keep in mind that this is even though I have some hearing loss in that ear) Operated side… at the maximum volume of 16, I can barely hear the song but cannot distinguish the words.
Sunday Aug 26th… Yesterday I received a prescription from the doctor to help with the vertigo symptoms. It is called Diphenidol It may have helped somewhat in alleviating the vertigo symptoms of a spinning room, but it does nothing for my lack of balance and falling over. Yesterday I also did what I would consider the first “work” since the operation. I helped a friend to build a shed door using a sheet of plywood and, 2x4’s for visual design and strengthening. The job was outside on a very nice day. I definitely feel that my mind was not up to par as I required extra concentration for simple calculations of the diagonal pieces and cutting angles. And!… my balance was not so good. Suprisingly when I bent down or squatted I would be most off balance??? Today is now the second day of this prescription use and I think it is helping a little. But, I still have a feeling of pressure in the ear, I still have tinnitus, and my balance is still off. Hearing is not any better. I also want to note that one of the ways I have tried to pay attention to the return of my hearing by snapping my fingers and how loud that noise is… interestingly enough is the fact that I can hear the snap loudest when my fingers are about four inches in front of my left eye. When I snap my fingers directly outside my left ear I can hardly hear the sound… this sound is perceived loudest when it originates in front of my face. Oh, and I’m not absolutely sure but when laying down my hearing gets worse.
Note… I have not felt the weird electrical sensations in my head today????
Tue Aug 28th… Today is not a good day!! This morning I had an appointment for a hearing test that I needed to have as I checked out other doctor recommendations. I think I have only faint lower tone hearing in the affected ear. The audiologist stopped the testing on my ear when she was going through the routine and I had a reaction to one of the sounds. It was like an immediate vertigo punch to the head. She, at that point told me I should see the doctor TODAY!! And she stated that she was concerned for permanent damage to the ear and my future hearing possibilities. I then made a copy of this log, my surgery report, and all of my hearing tests and took them to a well known Seattle physician that I had come to know about, from a news article… and having been told of him by another physician. In the coarse of doing this my head started to have the electrical sensations again, mostly in my left side and forward quadrant. I also became much more sensitive to movements of my head, becoming quite dizzy with small movements. I also developed a very bad headache. And, it felt as though there was something poking me in my ear? Not very painful but uncomfortable. As I am writing this I am fighting a nauseous feeling and the headache. I am trying to not move my head and just took a pain pill. I also put a foam plug in my ear as some sounds from the TV were making the tingling electrical sensation worse. I have for the last five hours just been lying here watching TV and hoping to get better.
We’ll see how the morning fares for me???
Wed Aug 29th… 6:00AM Not so good. I awoke with a huge headache and was feeling very cold even though I was under lots of blankets. When getting up and trying to walk, the vertigo was quite bad and my balance was terrible. Somehow I was able to make it to the kitchen and took a pain pill for the headache, then one of the Diphenidol for the vertigo, and went back to bed. Laying there shivering, I made a few calls to the doctor, my stepmother, and to a client. I needed to report my condition and I needed to cancel a job that was going to take place the next day. I’m sure I’ll be in no condition to do any work, especially if I have this vertigo and imbalance so bad today.
After about two and a half hours, I am feeling somewhat better and taken to writing this paragraph. I am just laying in bed propped up some and not moving about. I think everything I need is within arms reach and will make calls to schedule a doctors appointment locally as offices open for the day. The sounds in my ear are… tinnitus, and some other tones that are coming and going with variable volumes. Kind of like someone running through the radio dial, passing through the stations and static without stopping on any one source. It is now … about six hours since I first awoke. I have been laying here propped up so that my head is in a vertical position. I am now feeling well enough to go and take a shower. After the shower, I was cleaning my good ear with a Q-tip and went to dry the only outside of my operated ear with a Q-tip. I had placed a foam earplug in that ear so that water would not enter, nor sounds affect me as it seems I have become sensitive to some abrupt sounds. At any rate, about 3/4 of an inch above the ear canal I pressed the Q-tip to the outside of my ear, just where the fold starts to widen as it progresses to the ear canal, I pressed the Q-tip onto this area and got instant vertigo symptoms.
Thursday Aug 30th… Very bad and terrible news, it makes me become a little to emotional, and very sad.
I am told I will not likely have hearing in my ear again.
Several days ago, right after the hearing test I had dropped off copies of this log, my surgery report, and the hearing test at Swedish Hospital, for the well known Seattle doctor most experienced in these types of surgeries. His office called me for an immediate appointment, which I accepted, and thus this news.
He stated that I have no hearing in my operated ear, what I had perceived as hearing was just transmission of sound thru bone to my good ear. The snapping of my fingers that I had perceived as sound was actually my good ear hearing the sound. He scheduled me for the next available date for surgery…. Four days future as it is a long holiday weekend.
I feel terrible, and I am shocked that this has happened. This was supposed to be a pretty routine and simple procedure. What am I going to do?
Until the revision surgery I will be laying around and trying to not do much of anything. While talking with the doctor I think that I moved around too much while showing him what motions affected me most. The pressure in my ear is now quite full and I do not feel well at all. Nauseous and tired and dizzy and extremely disappointed.
Fri Aug 31st… Well, the hospital has been calling me with multiple confirmations of general information and for payment in order to be eligible for a prepay discount.
Today I’ve mostly been lying in bed trying hard not to move. The noises in my ear are similar to those of two months ago directly after the surgery. Tinnitus of a higher tone… constant. Melodic notes of two tones, maybe a G and a B. Pure notes, not sharp nor flat… these come and go and are infrequent as compared to the entire day. My ear feels full, I feel generally nauseous with some cognitive impairment. I am certainly more unsteady on my feet or maybe I should say off balance. And my voice sometimes resonates in the affected ear and it is uncomfortable. I’m trying to not move about too much so my ear hopefully does not get any worse than it is after the hearing test blowout.
Sunday Sept 2nd… God I hate this! I’ve been lying around all weekend trying to not move around so as to not aggravate my condition. My ear has a feeling of fullness, my brain isn’t working. Walking about, or just moving my head makes it feel like I’ve been drugged. A little stuffiness, And an electrical sort of feeling in my brain. Add to that I now have to put some horrid topical cream into my nose, just in case I carry a staff infection. Which I probably don’t but test results will not be back in time before my revision surgery… so I have to put this stuff up my nose just in case.
My head is just crap! Tried to play scrabble, but I could hardly remember how to spell any words with more than four letters. I still have tinnitus and a constant slight feeling of nausea. Sudden noises can trigger this electrical jolt thru my head, they don’t have to be loud noises, just staccato.
Right now it sucks to be me!
Thursday Sept 6th… The restorative operation was on the 4th of September, almost two months after the original procedure. This time it was at Swedish Medical in Seattle. Swedish is a very large complex of multiple buildings spread out over a wide area east of downtown. My doctor was Doug Backous, he is known as a top physician in this field and had scheduled me for surgery immediately upon seeing me last week. The buildings at Swedish are older and thus not specifically designed for today’s hospital environment. The halls are long and the recovery area is quite a distance from the operating rooms. Once you get into the operating room, it looks like they have much of the most modern equipment necessary to get thing done efficiently and quickly. There looks to be plenty of tools from which to choose for a surgery. So, at any rate I was in the operating room being prepared for surgery, trying to be observant and notice what was happening to me. The surgery was to be through my ear canal this time… I don’t know why but… the doctor knows what he’s doing so I assume it is the best route. I am out, but not to be put under completely, I do not remember anything about the surgery. Next thing I know, I am in recovery, sitting upright in a bed, with a blood pressure cuff and an oxygen sensor monitoring my vitals. I do not feel very well! Originally I am just nauseous, I take some water. Maybe as I had done last time I need to throw up before I’ll feel better. After awhile I take in a little broth, but now I’m getting vertigo. Any motion at all of my head and the room starts spinning. Not as violently as the prior surgery, and strangely in a pinwheel fashion instead of horizontally clockwise, but spinning just the same and it is quite nauseating. A few crackers, a small applesauce, some more ice water. About six hours later I finally needed to go to the bathroom and was helped to go. Afterwards, I was given a choice to go home or stay overnight. I had my ride come and pick me up.
The trip home was not so pleasant over bumpy Seattle roads that were under construction, down a steep hill that required a stop at the bottom, a large delivery truck pulled out in front of us, which required a sudden application of the brakes, stopping a little abruptly. Rush hour traffic… but we made it. Upon getting home I started up the three flights of stairs to my apt. Almost to the top, I broke into a little sweat, “I’m not feeling so good” I said and reached for the plastic bag I had brought just in case. Sitting there on the last of the stairs in the hallway where the echoe’s were pretty loud I vomited the days intake of liquids, wrenching it out of my stomach, wringing out the very last drops with horrid moaning cry’s and gasps. When thinking back on it I wish someone had recorded the event as it could have been classic sounds to use on voiceover or for a gag tape. I think that most people would almost get sick just by listening to my retching sounds. At any rate I made it home and decided to spend as much time as possible in an upright position for the next few days.
Sept 5th and 6th… Lots of sleeping. I had made a recliner chair comfortable to sit in, close to the TV, close to medications, a damp towel for my forehead was there, and extra blankets were close to be placed under my feet, or behind my head, or whatever I needed. On that first night I did call a neighbor for help as I had become sick a second time and just needed help getting drinks and pills situated. Getting up the next day to use the bathroom was unsteady but without vertigo symptoms. Similarly on the second day following this surgery… I was unsteady on my feet but not because of vertigo. The medication that I was now taking was Clonazepam. So! Not much to report on those first two post operative days. Tinnitus seems to have subsided? But I still have hearing episodes of pure notes as if played from a xylophone. The pressure in my ear seems normal and there is not too much leakage of blood. The single cotton ball suffices to absorb this drainage. My ear is a little sore near the cartilage area just in front of the ear canal.
Friday Sept 7th… Last night I succumbed to sleeping prone on the couch. Maybe around 4:00AM. I finally just stumbled over to the couch and passed out. No less for wear and tear that I can tell?? I did sleep with my affected ear up. I am getting around a little easier, not so much stumbling about, my head is not quite as sensitive to directional changes, so I am able to look at where I am going more sincerely. I even went for an eight block walk… very slowly, and carefully. But I made it without getting overly fatigued. One thing that is so very nice is that I now have some of my mind back! I can sort of concentrate, and I can remember much better than I could before the remedial surgery! I am hoping for a positive outcome in the recovery of at least some of my hearing in that ear. Tonight I’ll sleep in my bed and report on the wake up procedure.
Wed Sept 12th… Each day I seem to feel a little better, I’m not sleeping quite so much these days and even wake at a normal time in the morning. I worked out in the yard a little over the last two days, picking up leaves and weeds, and fertilizing the plants. The pressure in my ear feels normal, although I cannot hear anything in he ear. I can/do however feel more normal in the respect that I no longer have that dead space/feeling in my head when crunching ice or taping on my front teeth. It used to be that I had no feeling or hearing of any kind on the affected side…. Complete silence, which was a very strange sensation to have half my head no longer resonating sounds, I wish I could remember when I noticed the beginning of this empty sensation of dead space. But I had somehow become used to it, the stark contrast in this sensation was very evident if I were to tap on my teeth. At any rate that dead zone may be coming back? Or at least it is transmitting sound waves to the opposite side of my head where I can pick them up in my good ear. The doctor has me taking a medication called Clonazepam twice a day??? For vertigo, which I am no longer having such a problem with. I’d like to stop taking the medications as they do affect my cognitive thinking abilities. I’m not quite the dumb ass that I was previously while the fistula was actively leaking from my inner ear, but I can say with certainty it has an effect on my thought processes. I will continue with the medication as it may help with the return/rebuilding of my sensorial hearing abilities.
So… the operation seems to have been a success and the oval window of my inner ear has been sealed. But I am waiting for the packing to be removed from my ear so as to find out if I have any hearing or not.
Fri Sept 14th… Today I had the packing removed from my ear canal and my visit with the doctor. I will now be deaf in my left ear. During the surgery it was discovered that I had no graft from the previous surgery around the prosthesis and all the fluid had leaked from my inner ear. I had a dry vestibule. The surgeon thus removed the prosthesis and sealed the oval window to my inner ear, helping to cure my vertigo, but I no longer can hear any sounds, nor, will I ever again hear a sound with that ear.
Sun Sept 16th… I don’t feel so good today. I’ve been trying to walk at least a couple of miles a day and yesterday I did some sweeping up of the dirt on the driveway, which wore me out pretty fast. But today I just feel kind of lousy, I am a bit more off balance than I have been in recent days and I have noticed there is now a noticeable shake in my hands. When writing with a pen and paper I need to go very slowly and carefully or it looks terrible.
Makes me wonder about my death and if this is the beginning of the end of my life.
I had hoped that I would recover enough to be able to do the activities I had previously. But I have to think about what I will do should I never have my balance back completely. Ride a bike, ski, climb a tree? I haven’t even trimmed the trees yet this year because my ability to do so has been compromised, I cannot do anything requiring physical exertion. What is happening inside my inner ear these days? I don’t know. Will I regenerate the fluid that has been lost? Will it be possible to perhaps someday have a machine perform micro surgery with 3D machined components to rebuild those inner ear bones? Tomorrow I will call the original doctor with regards to all of this and why the Utah hospital bill was twice what was quoted and a few other questions with regards to this whole situation. 7:30PM… took a nap this afternoon and then went for a four bock walk… Laying here on the couch my ear is beginning to have a sound that is getting louder and louder. Continuous sound like white noise. A little lower in tone than that I heard while having the hearing test, but it has gone from silent to a bit of a roar in the last 3/4 of an hour. Maybe if I sit upright it will subside? TV listening volume before surgery was 32, after surgery was about 60, now is at 70??? 8:00PM my ear has calmed down.
Mon Sept 17th… Last night the roaring in my ear returned and I could not sleep. I eventually got up and took a diazepam, don’t know if it helped but I did sleep after a while. Then this morning I awoke with the roaring back in the ear and I do not feel so well, kind of nauseous. Maybe I’ll ease up on the walking and see if that helps???
I called the Dr from Ogden this afternoon and I also talked with McKay Dee Hospital this afternoon . The Dr. said that he was sorry that this had happened and should I come back to Utah he would fit me with a quality hearing aid… at least I would then be able to hear much better in my remaining hearing ear. I think I should do it… for the cost of a plane ticket $300.00 I can at least get a premium hearing aid. And I want to talk with him personally as well. As for the hospital… they had quoted a price of $6000.00 with a 40% prepay discount. Which would have been $3600.00 total (just for the hospital portion), assuming no complications. This was the sum that was required to be prepaid before my surgery! You will also have the doctors fees and the anestheologist fee to pay as well!
They then actually charged me $9396.81 and gave me an uninsured discount of $2349.20 which came to an additional $3447.61 more that was due than they originally estimated… This is almost double what they had quoted! Evidently, this was because I came from out of state? I even applied for an income verification discount… which they refused to even consider because I came from out of state. So… let there be a lesson to all that go after me! Get all of your quotes and costs in writing!
Here, I had elected to do what was supposed to be a minor surgery. I was going to pay for it myself with some help from relatives. And the worst possible outcome has happened!
I went from being a very healthy vigorous individual with a slight hearing problem to someone who has spent the better part of the last two and a half months sleeping. When I haven’t been sleeping I have been walking around half stupid with vertigo and dizziness. I now no longer have the vertigo but I do not have my balance back yet, I cannot ride a bike, nor can I go jogging. And I cannot move my head without causing disequilibrium.
I tire easily… I seem to need quite a lot of sleep. Oh… and I have had to pay for everything a second time… for a second surgery to repair what was done in the first surgery that went so very wrong. AND I have lost all hearing in my left ear. What a country! I’ve made plans to revisit Utah in two weeks.
Wed Sept 19th… Today my head seems more disoriented? I got up and used the bathroom at about 8:00AM but then went back to sleep until 2:00PM. I’m still in bed now at 5:00PM with the roar thing happening in my ear. All that I’ve done today is lay here in bed as when I get up and walk around the apt, my head feels strangely muggy. The feeling goes away if I am not in motion, but with any movement of my head I feel a loss of clarity? The hearing in my ear for most of the day has just been a steady sound similar to that of a jet airplane at cruising altitude, a soft and constant muffled noise of jet engines. I’m not sure just how long the roar has been happening as I have been in and out of sleep.
Around 10:00PM took a diazepam ????
Thur Sept 20th… I feel a little better this morning after sleeping most of yesterday. I took a baby aspirin and diazepam this morning as a preventive measure. My head has been somewhat dizzy today but I feel much better than yesterday when my cognitive abilities were so poor. I am trying to take it easy and not do much walking… only around the apartment. Maybe I can finally start to do some work on the computer which I keep on postponing because I feel so brain dumb, lets call it a feeling of 1/4 drunk now, but still slow in my thought processes and very much off balance. Moving my head in any way brings on these symptoms which are not as bad as before but still of concern to me.
Fri 20th… Still sleeping till late morning. Last night I had night sweats.
In an effort to realize how I might be progressing I tried to walk heel to toe, upright in a straight line… I cannot do it. My balance is way off!
Tue Sept 25th… the last two nights I have had night sweats. Both mornings I’ve awaken feeling pretty OK but after getting up and moving about, my head gets that motion disorientation that messes with my mind. Still off balance.
Sun Sept 30th… Yesterday I had my first “job” since the operation. A client called with a small group that needed team and individual shots. Twenty kids, (a cheer team), seemed like the perfect chance to see how I was going to be able to handle working as I will be have to get back to working very soon. The job took about an hour and a half and I only fell over once during the shooting. I had an assistant, which normally I would not have needed. But, I wanted to be sure not to mess anything up. At any rate it went OK. I was a little bit tired afterwards but not to bad… very glad that I had an assistant.
This morning though has been a little more off balance than normal and my head is a little more fuzzy and scrambled. I have to concentrate harder to make everything work right.
I thought that during the last few days I was improving considerably in my balance and stability, which correlates directly with my cognitive improvements… but now not so much??
Mon Oct 1st… Flew into SLC midday and had an appointment to see the doctor at 2:30.
He looked into my ears and said that I had healed nicely from the second operation, he also indicated that what I was and have been referring to as dizziness was a positional vertigo (BPPV). But since I was not experiencing the wild spinning sensations with this dizziness… I personally did not really consider it vertigo. At any rate his office did order me a hearing aid, which would be delivered next day.
Tue Oct 2nd… Went in for the initial hearing aid fitting at 11:00. It took just over an hour to set me up and to program the earpiece. Octicon Agil with streamer and connect line. Afterwards we went to the hospital to discuss those extra charges and while there, went to the cafeteria for lunch. I had the hearing aid on and since there were so many people in the cafeteria talking and making noise, it made me nauseous and dizzy. Way to much noise going into my ear! Very tired at the end of the day with a bit of a headache, so I took a diphenidol and a Lortab.
Wed Oct 3rd…. I rested for most of the day and tried not to move about much. I am best able to concentrate and have minimal vertigo symptoms when I am being very still.
Sat Oct 6th…. Went up into the mountains for an overnight at a vacation cabin. The drive was bumpy and at times up to 11,000 ft elevation. Needless to say I was dizzy most of the way but recovered once we stopped moving and I was able to just sit still.
Mon Oct 8th… Had a second adjustment of the hearing aid, which I think went well. I was able to specify how I had come to feel about the different program settings and we took away some of the more confusing and unnecessary features of the unit. It may still be a little bit to strong in the higher tones? Later in the day I returned back to Seattle and I noticed an unusual thing… While chewing ice and staring at the airline seat so close in front of me, I heard the chewing only in my right ear which I expected, but I noticed a shift in my vision as I chewed! My vision shifts horizontally as I hear the crunching of ice. Little shifts that I can actually see as a sort of horizontal vibration while I crunch the ice. I’ll check to see if it happens while chewing regular food in the future.
Sat Oct 13th… Today was the first day that I really had to work very hard at what I do. This past week I intentionally set up my schedule so that the work would be light and not very stressful. Today wasn’t to bad, not really very busy, but it did wear me out and I went home afterwards and took a nap. That was after only five hours of work… we’ll see how I do in a few weeks when it really gets busy!
Symptoms at this time.
Positional Vertigo is still present with any movement of my head. My hands are shaky but not so bad. The swollenness feeling of my head is most bothersome as is the slight vision disconnect. My balance seems to be getting better. But I still tire very easily…. I need more exercise! And of coarse I have zero hearing in my left ear.
Wed Oct 17th… tonight my head is giving me fits. These last two days I have worked for about three hours each in the late afternoon. The job requires working with a lot of kids all at once, dealing with their parents, and getting them to settle down and have photos taken. I position each child for their individual photo and then take a team photo…. Which requires a lot of back and forth motion on my part. There is also a lot of noise going on while I am getting everything positioned.
So… while I am getting it done, the work is making me very tired and is making my ear have noises and tinnitus and the positional vertigo is worse than usual. If I were to have a job in the construction trades? I would be toast, There is no way I could function at a job where I needed to be extra physical. Nor could I perform well at a job requiring much critical thinking on my part. I am able to do the work that I do now… only because I have so much experience that I can almost do my photography jobs without thinking!
Mon Oct 22nd… Last week I worked Tuesday thru Thursday and it took thru the weekend for me to recover from the screaming ear, and the brain swell, and the extra dizziness. Tomorrow I will again have to work and thus I need to find a way to ease the symptoms brought on by the physical movements I do whilst shooting. I’ll try a diazepam before going out for the shoot and see if that helps keep my head calm.
Happy to report that the diazepam did work some... my head feels a little swollen and I have some ringing tinnitus in the ear, but at least I can function much better after working and I think I’ll be able to go to sleep this evening as well. Next week I have to work six days straight so I hope to control the symptoms similarly with the diazepam medication.
Sat Nov 3rd… Today was a busy day for me with lots of kids to shoot, lots of noise, and plenty of stuff happening. This last week I maintained pretty well by taking a diazepam before working each day and occasionally at night. Today however I could feel my head starting to scream after only a few hours working. The tinnitus was becoming louder and I could hear other noises happening in my ear. I took an additional pill and was able to control the symptoms enough to be able to work five hours of being busy. Afterwards I did go home and took a three hour nap, and then slept quite a bit on Sunday. Still off balance and cannot walk a straight line. Funny thing is that I seem to fall over more when I am squatting???? Maybe because when I am squatting I am moving my head in a certain motion that is most vertigo inducing? I still tend to call the vertigo…. Dizziness because I do not have the room spinning effects.
Wed Dec 5th… Well, not much has changed.
I seem to get by in my work, although I need help in situations I easily handled by myself prior to the operation. I still have the dizziness with any head motion, or movement, My eyesight seems to be slightly off when I move my head…. A lag time of sorts where it takes just a moment for my vision to clear and become distinct. When I move my head to much in a given period of time I get a swollen sensation in my head and the tinnitus starts to get louder and I get a “screaming ear”, at least that’s what I call it when my ear is loud with the tinnitus and a dull roar like a jet airline at cruising altitude.
I still tire easily with physical activity and need so much more sleep more than usual. My concentration is terrible after, or should I say during these episodes. My balance is not so good…. I would fail a “walk the line sobriety test” At any time! And my hands sometimes shakes like I have Parkinson’s disease? I don’t think I am getting worse but I don’t think I am getting any better either. Coming up is 14 days straight of work…. I have helpers to hopefully ease me through this schedule, but I think it will really knock me down.
What is truly horrible is that I know what I have lost. A part of my brain has died and will not come back. The “compensation” for the lost portion of my brain has been weird and unusual to feel as it occurs… as the electrical sensations accompany the rewiring of my brain are not anything I have experienced before.
The trouble understanding speech in a crowded room, not being able to multitask, balance issues….
There is no wound on the outside of my body to show how crazy my brain sometimes feels.
I sincerely wish I had lost a limb rather than this mind dumbing nerve and brain damage!
Wed Dec 26th… The 24th was a busy day for work and my ear was making things difficult. The ear was making noises and it was hard to concentrate and work by the end of the day. In this condition I become forgetful and sometimes cannot do everything I used to do for my work. I need someone to look out for me and watch for my mistakes… something I never had any problems with in the past before this operation. Most of the 25th I spent sleeping…. Recovering from the busy day on the 24th.
Thur Jan 3rd… it has now been six months since the original operation. I am trying to get normal things done, such as raking leaves, planting bulbs, paperwork, all kinds of stuff that needs to be attended to. Any physical task makes my head feel tingly, swollen, and numb. Crouched upon my knees digging into the ground with a bulb trowel causes my head symptoms to worsen. Vigorous raking… same outcome. Walking is manageable but I need to stop moving when I have to acutely see something. It is not at all pleasant and I do not know if it is permanent? I still tire easily, I think because of the vision disconnect and blurriness. I tend to be mostly OK when I am being very still and not moving about in any way. I guess it is something I am forever going to have to live with and thus will be restricted in what tasks I might accomplish in the future. It is hard to imagine that this simple ear operation has changed my life so dramatically.
My advice to those considering a stapedectomy…. Get a stapedotomy instead.
It’s the same operation performed with a lazer…. So the technique is much more precise!
Plus the doctor is more likely to be younger and have a steady operating hand.
Fri Jan 11th… This morning I’m actually feeling pretty normal as I lay here in bed. The week has been rather lazy and I haven’t done much more than walk about. I’ve done a few chores at a low level of difficulty or physical output. This week however has been a little scrambled though, as to how my head has felt. It has been just a little off all week, a little numb/stupid/swollen feeling has persisted all week. And now this morning I feel pretty good and it is evident that it is a more normal feeling than I’ve had in quite a while. I did take a pill last night in the early evening so I need to evaluate the correlation as to if I might have similar circumstance should I not take a pill for a considerable length of time and then have similar results? Stay tuned.
Thur Jan 17th…. The last two days have been a bit more dizzy than usual, I don’t know why? My ear feels somewhat full and stuffy, there is high pressure over the region, a correlation? Balance is off and the roar in my ear is persistent.
Fri Feb 1st …. I have over the past several days, had to prepare an apartment for renting. Not very physically hard work but… busy work… cleaning the windows, filling nail holes, touch up paint, and overall cleaning of the unit. During this time, my ability to function normally has been limited to maybe four hours at a time. After working for several hours I’m experiencing headaches and become very fatigued. I rest/nap for several hours and am then able to work for another short period of time. My head has the swollen numb feeling after pretty much any physical exertion and is extremely tiring.
It has now been a year since the original surgery. Sometimes I feel like things are getting better and sometimes I feel just terrible. Mostly, if I just do not do any kind of physical activity I am OK. As soon as I start to walk around or work hard with the kids, my head starts to get dumb and my mind becomes scrambled and I have dizziness and become fatigued. Sometimes just being in a stressful situation will set it off. As when I was filming a dance recital and my cell phone went off. While attempting to continue filming, I was also trying to get to my phone and shut it down. My head went totally crazy and I was toast for the rest of the day with my ear screaming and making weird noises.
Are things getting better? I really don’t know.
I still would rather lose a limb than be in this condition!
Mon Sept 9th… 2013 (A year after the 2nd restorative operation)
Things are not getting better, nor are they getting worse. I am just getting accustomed to how my brain is now operating. I know that motion of my head is what makes me dizzy (BPPV). I know I cannot think very well at the End of the day… that my mind is most clear in the Mornings.
Mornings are before I start to move about and my head symptoms begin to worsen my cognitive abilities. Movement of my head is still not quite in sync with my eyesight. And I have lost my balance. Only because I have eyesight am I able to walk in a normal fashion.
I don’t think people around me know when I am having these difficulties and… I am certainly not going to show it!
My daughter and I went to Costa Rica this summer, a trip that was postponed from last year due to the surgery. I had only one truly bad episode where my ear went crazy. It was most likely brought about because we were in a location where we needed to be vigilant concerning our surroundings. I had just brought out my camera for the first time and I was taking photos in the capital city, San Jose. Trying to watch our backs, take photos, walk with purpose, and… get the shots I wanted… while there were so many people about, and in places that at times were very crowded. I guess it was just too much… my ear started to scream, making noises and tones. I developed a huge headache and then a fever. I was laid out for almost a day, not able to do anything, with the headache lasting for several days.
At any rate I still tire because of the dizziness and need my naps.
My hands sometimes shake really bad like I have Parkinson’s disease.
I found I can ride a bike but have learned it is difficult to start with an up hill lie.
My brain becomes numb when the exertion is too much… the electrical sensations come back.
This is also what happens when I attempt to carry to much weight. My brain goes numb? And my mind becomes scrambled.
Everything just takes a lot longer to get done.
And, yes I still would rather have lost a limb than have lost this part of my mind!
Monday April 7th …2014.
Has it really been so long since I last put my thoughts to paper?
Things have not gotten much better. I so very much want to start exercising, but when I move about to vigorously my brain becomes numbed and my head feels swollen. And… any motion of my head makes for a slight visual disconnect.
It’s my opinion that this is what makes me so fatigued.
I still sleep much more than I did before the operation. And after getting up in the morning and moving about… my cognitive abilities are impaired by my brains inability to think clearly.
If I had to describe it… it would be analogous to having a flowing stream of water being my brainwaves and thought processes.
First thing in the morning before moving about… the water of this stream flows unobstructed and natural.
Then when I start to move about…. The acceleration of my head in space causes a blockage of my brainwaves. The thoughts still get through but they are blocked and slowed down, sometime severely. As if you were to block the flow of water in this small stream with a board and the water had to find a new way around the board and then again begin flowing. I guess that is why I often find myself lying on my bed or on the couch. Stopping the motion of my head, allows me to recover slightly and my brain to function more normally than when I move about and have this blockage of cognitive abilities.
I guess I am ready to post this journal.
In three months it will have been two years since the first operation and while I have doubts as to completely recovering normal brain functions, maybe with time I will continue to heal?
One of the reasons to post is to possibly learn from others experiences.
Can anyone out there tell me if I get an operation to completely sever the balance nerves in my operated bad ear…. Will my brain completely “compensate” with the other side taking over these lost functions? Or will that help at all? In other words… is there some way to get over the dizziness that accompanies the motion of my head?
I think that I would call it “normal” although deaf in one ear…. If I could just move about in time and space without my brain becoming a scrambled mess.
I find it hardest to deal with my brain not functioning as I know it should. And I have spent entirely to much time sleeping these last two years in order to settle my brain down in order be able to think reasonably well.
Contact me at:
Monday May 5th …2014.
These past few weeks I have been working quite a lot. I guess this has taken a toll on me as my ear gave me a fit yesterday…. All of the weird noises, splonges, and tones.
I am now resting and feel horrible.
At least my ear gives me warning as to when I am going to be incapacitated and I have come to learn recovery is generally sleep and rest for a day or so.
Sunday March 1st…. 2015
Oh No! I was on a plane flight from Seattle to Florida and as we were descending to land in Florida, the plane started a turn to the left, I was looking out of the window and without warning I got an attack of Vertigo! Crazy spinning of my vision for about 30 seconds… I think. I just concentrated on the seat in front of me and tried not to see anything else. After a time I was OK, but I have no idea how plane flights will affect me in the future? Maybe this was brought about because it was so much time in the air (nonstop from Seattle) and the pressure changes as we descended coincided at the same time as the plane rolled to the left and descended quite rapidly thru a downdraft from a cloud?
(There was no reoccurrence of the vertigo on the flight back.)
Friday July 10th …2015.
Today I went to the doctor for what I anticipated was going to be a chemical labrynthectomy… instead he has recommended a possible repair operation in a few months time. And until then… possibly more physical therapy. I was really hoping to get the ear killed at this appointment. I am so tired of being like this. Every movement of my head leads to a brain scramble and while I am becoming accustomed to being this way, I am tired of being like this. The eyesight disconnect with movement of my head is still very fatiguing and I generally find that I can last about 4 hours before I need a nap to recover and get back to a more normal state of mind. That being said, the harder I work or move about the more fatigued I become. I have found that I can make my eyesight jog to the side by pressing on my ear and releasing. Even worse is if I create a suction in my ear with my finger and then pop my finger out of the ear. This creates much, much worse movement of my vision without having moved my head at all.
So…. What to do? I still have loss of balance, concentration and thought processes.
Oh…. And I have an almost constant light headache, just something I take two advil for every morning and again many afternoons.
I don’t know… I just would like to have my brain back to working normally without this brain scramble that I get from movement of my head.
August 20th…. 2015
My back went out?
Interesting connections between my back and my ear.
So, about two weeks before my back pain, I had decided to start getting exercise and get my body back into shape. I began by riding my bike from Ballard to Shilshoe Marina and back again. This route take me down hill to the Puget Sound and then back by a hill that is a steady uphill push for a mile or a mile and a half. Nothing to extreme and I became tired in the lungs but not so much in my legs as I followed this route several times on alternating days. I was aware that my eyesight was blurred on these rides as the road is bumpy and I needed to turn my head to watch for obstacles and hazards while riding. I am also deaf in the ear that normally would hear approaching cars, so that is another challenge.
I did this route, I think four times. Then I switched it up and did a longer route that included a longer hill that was not as steep…. Just a longer push into the pedals of the up hill portion. The route was from Ballard to Gas Works Park, a short rest there and then the long up hill, thru Wallingford, up to Woodland Park and afterwards a nice downhill coast back to Ballard. I did this route three of four times.
So…. The connection to my ear difficulties. Apparently I over did the exercise, my legs while not tired, became spasmed, and this led to spasms in my lower back. Terrible back pain! Sharp and jabbing! My only relief was to lay on my back and not move about.
So I spent four days at home (mostly) laying on my back. When I went to the doctor, he indicated that it was muscle spasms in my back that was the source of my pain. I had thought it was a pinched nerve? I then went to a chiropractor and his diagnosis was the same….. muscle spasms. Back to the point though…. At the end of the four days that I was laying around and not moving about…. My head felt the best that it had in years!
I was almost to a normal feeling in my head and able to think straight and my thought retention was good and my comprehension was pretty good. My brain scramble was going away by the lack of movement of my head over this period of time. Yeah!
So I am optimistic that something can be done to relieve my conditions.
It should also be noted that all of the symptoms of brain scramble and loss of cognitive abilities has returned now that I have been moving about again. The more I move about, the more I lose the ability to think straight. The exercise’s that I have been given to help my vestibular system recover are not helping. They only worsen the symptoms and I am more fatigued by having done them.
My operation for a semicircular canal blocking? Is scheduled for the end of October.
Sept. 8th 2015
Well… This is not good. I have woke in the middle of the night with vertigo, Laying in bed my vision is spinning from the right towards the left over and over and over again.
This episode is slower than previous episodes and it slowly diminished over time and as I got up and began moving about.
Sept 11th 2015
I had an appointment with rehabilitation today and there were some interesting developments. She tested for nstagmus with the Hall Pike maneuver? Nothing. I of coarse have difficulty with balance walking heel to toe, and my balance is off whenever I close my eyes. But concerning my vision….. Since my original operation, I perceive a slight delay/shift in my vision as I move about in daily activities, which can be very fatiguing. The therapist asked me to read an eyesight chart with no motion of my head….. I did OK. But then she waggled my head back and forth rapidly and asked me to read the same chart. I could read slightly smaller lettering??????? It was as if I were looking at a chart with a strobe light and the lettering came into focus between the blur of the edges of the same letters?
Then, she asked me to bounce on a trampoline. I expected my head to have problems with the motion, but there was no real brain scramble associated with this motion.
Straight up and down I seem to be fine with. Left to right movement of my head and even tilting of my head as if answering yes….. both produce a brain scramble that I have to concentrate thru in order to function at the task at hand.
Oct 2nd 2015
This day I had another operation to fix my ear. I was informed after I came out of surgery that the surgery was a success? I guess we will find out soon enough.
So as far as I can tell things were so much better than the last two operations! As I awoke in recovery I felt myself lying there slightly propped up, no real discomfort and no vertigo this time! My throat was fine, my ear was sore, not much bandaging of the ear that I could tell. So for me this was a vast improvement from both of my prior surgeries where I had either serious horrid vertigo (1st time), or mild to moderate vertigo (2nd time). One thing I might state is that during a pre-op check up. I was asked the question of whether I tended to get sick after surgery. I of coarse replied that after both of the prior surgeries I threw up. I was informed that the sickness was due to a gas sensitivity, and during this operation, I was given more IV sedation and less gas sedation to help alleviate my barfing.
OK…. So I felt much better directly after the operation, how about later after a couple of days?
The operation was a Friday, mostly for the next several days I lounged about and did not much of anything. My head seemed to feel better? I was still discombobulated and dizzy with any motion/movement of my head…. But, I think that the brain scramble is lessened and I think that my vision disconnect is lessened? Its hard to tell, but I am less fatigued after normal moving about. Before this third operation it was normal for me to only be able to take three or four hours of movement, after this bit of movement and activity I would need a nap in order to recover from the fatigue. It seemed like I could sleep at any time day or night, just from completely normal activities. My brain would feel scrambled and it was hard for me think after any movements I might make, I couldn’t think straight, my memory was horrible and there was varying noises in my affected ear.
Almost immediately after this operation, I seemed to be able to have more concentration, my brain did not have the degree of scramble as before, and the tinnitus is now more stable…. A very high pitched whine like that of a jet engine, accompanied by a lower toned wshhhhhh, which sometimes pulses with the flow of blood through my veins.
I have been taking it very easy and there have been no ear attacks as of yet.
Another thing…. No more night sweats! I was just accustomed to having somewhat frequent night sweats. I slept with a towel by my pillow…. I had no definitive correlation as to this being caused by my ear but now that I no longer am having them I think that the ear was the cause. The night sweats were frequent, mostly sweating from my chest, and upper body. Infrequently I would have major drenching episodes where it seemed as if I had a glass of water poured onto me. During those episodes I would soak the towel and the sheets and the pillows and I would need to change sides of the bed on which I slept to let the other side dry. So…. More stable tinnitus, no more night sweats, lessening of my brain scramble… still dizzy when moving about and still have disequilibrium most all of the time at this point. Oh… no taste of rootbeer associated with this operation!
Oct 13th 2015
Today is the first day that I have been back to work. I was kind of busy with the kids and the back and forth between working of the two photo areas. I have now heard more weird noises in my operated ear and I am tired and not wanting much to continue, but I have to work on thru this day.
By the end of the day 9:00AM – 7:00PM I am ready to go home and rest, I have a small headache and am quite tired. By the time I drove home I am feeling a little bit better, I take two advil, have dinner and am working just a little bit on the computer. I feel much better than I might have prior to this third surgery, my brain seems to be working more freely, without getting jammed and although I am tired, I am not so fatigued that I need to sleep for a few hours to recover. Nice!
Oct 18th 2015
This last week I worked six days and I have been able to get through this week much easier than I might have before this third operation. My mind is not so blocked and my vision while blurred with motion of my head…. Is not so bad with the disconnect of syncing my movements.
I’m going to definitely have to ask the doctor about this. How is it that a fistula can make your brain disconnect the sync between your head motion and how you perceive that motion in real time? As well…. How can a fistula make it almost impossible to think and impair memory? It may seem crazy, but up to this point I was looking at how much more I could take, how much worse my condition needed to be before I thought it was time to try to swim to China.
It was something that was always on my mind…. At what point do you say good bye?
The human mind is a tool that we use to build on the experiences we have and we make decisions to change our lives based on the empirical knowledge we have built into our minds and databases. One man learns from another and carries that knowledge to another level, building one block of knowledge on top of another block of knowledge. Without the capacity to learn are we no longer human? My capacity to learn has been severely restricted for the past three years. And as such I was feeling the need to decide how long I could go with no changes in my condition or if a worsening of my condition and my cognitive disabilities might eventually make life unacceptable.
Now, I feel that I can think again, there are words that I could not remember that are coming back into my vocabulary. I feel so much better at the end of the day, and throughout the day as well. Turning my head back and forth a few times does not put me into needing a nap to recover. Yes I am dizzy. Yes, my vision is not quite right. Yes, my balance is all screwed up. Yes, I am limited in my physical capabilities. Yes, my hands still shake. But! I feel so much better in the sense that there is hope for me to THINK again!
It was this inability to think (and remember) that really messed me up the most with this experience.
Things are a little better for me now that another year has passed.
But! At the same time things are really about the same as January of last year.
My eyes are not generally in sync with my brain and I have a vision blur when I move my head. It no longer causes the “brain scramble” as I called it, but it is still very fatiguing and if I am being very active, I need sleep periods to recover from the accompanying fatigue and let my brain normalize again after activity. Being inactive and still and quiet is best for my cognitive workflow where I have to think about problems and use my brain to solve them.
My balance is still out of whack. I practice different balance techniques, and I have put myself into different balance critical situations where I have learned some boundaries of my abilities. I generally have to take things slow and carefully because I have been known to… just fall over without any warning. Even when my eyes are open and I can process the event in real time, I have fallen into a wall, or just lost my balance without warning. Usually it is when I am carrying something and I might be out of center balance, or I am tired from being too active. Or it is pitch black out.
My limit on walking distances is about three miles…. After about three miles I find I need to sit down and close my eyes and rest for about 15 minutes or so. Walking is very jarring to my eyesight.
So…. At this time (2017), I no longer feel like I am being hit in the head with a 2x4 every time I move my head.
Now it is more like just having a fat lip… sort of numb. Not fun, but much more manageable.
The headaches that I was having a year ago, that were low grade almost constant headaches, are now not as persistent, especially if I am not being active and moving about very much. My daily dose of advil drops dramatically if I am not active.
I am still trying to get more fit these days, but it is hard to do when the weather is cold and rainy or freezing outside. I lift weights some and try to do minor indoor body exercises.
Things have not changed, for the better… or the worse. I get by just fine and I don’t think people realize how difficult it is for me to perform many normal activities because I am very deliberate with my motions and I concentrate on my performance of the tasks at hand. My vision is what keeps me from falling over and walking sideways.
It is also difficult for me to be in groups of people in noisy situations as I cannot hear everything, nor process all of the sounds very well. I sometimes will just walk away from that situation instead of acting like I hear everything that is being said around me. I am very good at anticipating what will be said, even reading lips to an extent, and can thus interpolate between words to fill in the sentences. But in very busy environment’s it is just easier to take a break and come back at things when there is less going on.
My recommendation for anyone thinking of getting a stapedectomy… DON’T DO IT!
Get a STAPEDOTOMY instead. There is no reason for a physician to remove this tiny little footplate in your inner ear, when he/she can drill a small hole into that footplate with a laser and accomplish a more efficient and less damaging outcome. If you do have this operation and experience vertigo or persistent dizzyness…. STOP EVERTHING, get evaluated for a fistula and get it repaired as soon as possible!
To Doctors everywhere:
To those that might have an interest, especially physicians that perform ear surgeries:
Living with a fistula for three years has given me an experience that has been not very pleasant, although to most observers of my life, and to those who I have worked with, it was mostly an unknown and unseen inner ear condition that I just dealt with. It is this learning experience of those years living with a fistula that I hope to convey at least to some degree of vicarious projection for those reading these notes.
The most unpleasant symptom of an active fistula for me was VERTIGO! Vertigo is horribly debilitating. Truly, I think it could be the first stage of human insanity…. When a severe episode came about, the room would be spinning wildly, I would become nauseous and my head would break out in a sweat. During these extreme vertigo attacks…. there is nothing one can do but lay there and suffer. Any movement or motion of my head, even the slightest movement, would make the spinning worsen and prolong the vertigo attack. Overcoming these severe vertigo attacks just takes time and attempting at complete motionless inactivity.
Comfort to those experiencing vertigo might be offered with blankets if one becomes chilled. Better relief for those suffering, might be a soft ice pack or wet towel offered for the forehead and to cool the face. Prop the head so that when the patient relaxes, their head will remain in a stable and stationary position and not move at all.
So… how severe was my fistula?
Initially, I’m going to guess that mine was pretty large. I’m thinking that after my initial stapedectomy surgery I had a fairly large fistula as evidenced by the severe vertigo I experienced in attempting to sit up in the recovery room at the hospital. I think that this fistula possibly worsened during those next few days and then may have been enlarged even more when the doctor removed the bandages and packing from my ear. At that time, I felt the suction of him removing the packing and then…. The worse vertigo yet… lasting for quite some time and requiring an injection of some medication from the doctor to help with the symptoms.
I lived with this fistula condition as it worsened, until it was almost completely unbearable. My original doctor who was some distance removed from me after the first ten days, simply stated to me, week after week, that “I needed to give it time to heal”. After seven weeks with no improvements and even more additional and worsening symptoms I lost confidence in his advice and sought out other opinions, which ended up being… “ have something done immediately”.
My recommendations are thus based on this experience… Fix the fistula as soon as possible!
I think it is pretty universal knowledge that vertigo can be a primary symptom of a fistula. Thus, if a patient has any vertigo symptoms immediately after a stapedectomy surgery, there is a problem. On two occasions, Directly after my first two surgeries, I experienced vertigo symptoms. The first time was what I would describe as “severe”. Beginning to move into an upright position in the recovery room and not being able to. Experiencing the spinning of the room. Not being able to move or do anything for some period of time. This I associated with a major fistula.
The second surgery which was a restorative surgery to fix the fistula that was the result of the first surgery, was immediately followed with minor vertigo symptoms in the recovery room. This time the spinning of the room was manageable and I was able to push thru it and did not have the complete loss of control of my senses. This I associate with a minor fistula, which I then lived with for several years.
The doctor thought he had repaired my oval window fistula, but he was not completely successful. AND, there was a second fistula location which he had not anticipated… in the round window… which was damaged either due to lack of fluid in my inner ear for this seven week extended period of time, or had possibly been damaged during the first surgery.
At any rate, after this second surgery I was left with what I would call a minor fistula, which caused me a great deal of grief to live with. But the symptoms of this “minor fistula” were somewhat manageable. The worst of the symptoms for me was a “Brain Scramble”
Whereby any motion of my head caused me to lose the ability to concentrate and think straight. When confronted by sometimes simple thinking tasks, I wasn’t able to think very well, nor come up with a correct answer until I physically stopped moving my head. Then after some moments I could think again, my thoughts would begin to flow normally, as they would have done before any of this happened to me.
So while vertigo can be caused by an active fistula, another “tell” of an active fistula might be this “brain scramble” and the inability to think straight.
Then there is unsteady tinnitus. I have experienced, that in my case, after the fistula was actually successfully repaired (third operation), my tinnitus became steady in tone. Before this successful repair, my tinnitus was varying in pitch and tone depending on my level of physical activity. Not even close to ever being a steady tone. Activity and movement sometimes even caused what I call an “ear attack” where my ear would basically warn me that I was being too active and moving about too much. My ear would on these occasions begin to make varying tones and noises, which would generally end with my developing a fever and needing to sleep to recover from my exertions.
A third “tell” of an active fistula might be visual eyesight disconnect.
During my active fistula periods… when turning my head and visualizing on a subject…. There was a small lag time between the time I stopped moving my head and the time my vision caught up to the subject and I could see it clearly. Of coarse, this is not only a strange sensation and it takes some getting used to, but it is also quite fatiguing and I would need frequent naps to bring myself back into a normal condition so that I could function as needed for my work.
And a forth “tell”, is vertigo when flying. During the years that I had this fistula, flying was sometimes a problem. At the end of the flights that were somewhat longer in length, when I had been in the air for more than several hours…. I experienced vertigo when descending for the landing. Small episodes. But the first time it happened to me I was alarmed and concerned that I might be forever completely incapacitated. Pressure changes when the plane is coming in to land, when you see the other passengers clearing their ears…. Might cause a vertigo episode.
So…. Can you live with a fistula?
Obviously the answer is yes, at least you can function with a minor fistula. Should you? No, probably not!
Even though I lived with an active fistula for several years, things are so much better for me now that I have my fistula repaired.
I can once again think more normally and I no longer have the vision disconnect.
I no longer sleep for 12 to16 hours of the day. (With an active fistula, I was always napping or sleeping to recover from the fatigue of having my brain being so discombobulated).
I do still have some residual blurring of my sight with motion of my head, but it is manageable. And I am also living with a loss of balance due to the trauma done to my inner ear by not having fluid in it for an extended period of time which was caused by the complete loss of all of the initial graft of the first surgery and resulting dry vestibule. Thus, I have come to be vigilant and careful when I am in any sort of situation where should I fall I might cause injury to myself or others.
So the questions to ask of patients when you suspect a disabling fistula…
Do you ever have Vertigo?
Does your tinnitus vary or change with head movements, or physical exertions?
Does movement of your head cause cognitive disabilities? Does it affect your ability to think?
Do you sleep excessive amounts? 12 to16 hours a day?
Yes to those questions should indicate restorative surgery is necessary.
Oh, and do you really want your patients projectile vomiting after surgery? This can’t be very good for the inner ear and those tiny grafts that you just put in place? Should doctors use IV sedation vs gas for stapes surgery? Then, there is no chance of dislodging your handiwork from the vomiting right after surgery.
Would it be better to use IV sedation???
And… have your patients keep a log and write things down as they experience their changing symptoms! It is almost impossible to remember things accurately when you have a fistula. Sometimes I couldn’t remember anything just after walking out of a meeting. Later I might remember everything that was discussed, maybe weeks later. And sometimes I would remember just parts of what was discussed.
If you write it down right after it happens, then it is accurately recorded.
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