My Stapedectomy
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
WhatÕs your name?
Blah, blah, blah, blahÉ. Well weÕre
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 canÕt 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 faceÉ 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
tightÉ. 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 upÉ.. 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 didnÕt feel to good.
Thursday July 12th É.
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 IÕve 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 earÉ IÕm 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 donÕt 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 vertigoÉ 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 14thÉ. AM the tinnitus is not very loud in my
left ear but while sitting here slightly tilted of headÉ. 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 15thÉ. 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 dumberÉ 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 secondsÉ. HasnÕt happened yet, even in the ear
that was not operated on!
Tueday July 17thÉ.
Went in to the Dr. for a follow up. The operation was on the 11thÉ 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. IÕve 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 É
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 É
OK, mostly sleep, still feels like my mind is not in sync with my body.
Sunday July 22nd É
Dizzy
Tuesday July 24thÉ OK
Plus or minus. Even drove to the park and did a few errands.
Wednesday the 25thÉ
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 couldnÕt
even walk straightÉ 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 ÒEpley maneuverÓ.
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 28thÉ.
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 IÕd 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 earÉ. 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 crazyÉ.. 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 IÕm afraid of
screwing up work that IÕve 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 floorÉ immediatelyÉ 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 30É Slept late. Had a
little trouble getting upÉ 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 1stÉ 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 wasÉ that I was occasionally making myself
have minor vertigo episodes by swallowing. I could actually become more dizzy
just by swallowing?
Thur Aug 2ndÉ 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. IÕll 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 3rdÉ 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. IÕll try to be more observant of symptoms. Called the
doctor again and he said that ÒI am just still recoveringÓ.
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 4thÉ 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 5thÉ. ItÕs 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/7thÉ. Mostly uneventful, a little bit
unsteady on MondayÉ then by the
end of the day on Tuesday I was feeling pretty normal. My head felt rather
clear and I wasnÕt so off center and tilted of balance.
Wed Aug 8thÉ 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 9thÉ. 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 earÉ 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 10thÉ. 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
timesÉ I did so quite quickly and as smoothly as possible, which felt good in
my legs. The first time IÕve 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 13thÉ 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 becomeÉ IÕll just
have to wait and recover.
Tue Aug14thÉ Talked with the doctor again yesterday
and he seemed to have no real concerns with my progress, so IÕll 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 selfÉ 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 18thÉ 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
onÉ 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 dayÉ 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 21stÉ. 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? IÕm not really sure so IÕll
try to be more active in recording things immediately.
Wed Aug 22ndÉ 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 donÕt
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 24thÉ 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 IÕll report on that
after trying the prescription. At any rate my balance is still off. ItÕs like
when I go to tie my shoes and I fall over as I lose my balanceÉ 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 sideÉ I can
hear at volume 1 (keep in mind that this is even though I have some hearing
loss in that ear) Operated sideÉ at the maximum volume of 16, I can barely hear
the song but cannot distinguish the words.
Sunday Aug 26thÉ
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
ÒworkÓ since the operation. I helped a friend to build a shed door using a
sheet of plywood and, 2x4Õs 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!É 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 isÉ
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 soundÉ this sound is perceived loudest when it originates in
front of my face. Oh, and IÕm not absolutely sure but when laying down my
hearing gets worse.
NoteÉ I have not felt the weird
electrical sensations in my head today????
Tue Aug 28thÉ 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 articleÉ
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.
WeÕll see how the morning fares for
me???
Wed Aug 29thÉ 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. IÕm
sure IÕll 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 areÉ 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 É 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 30thÉ 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 surgeryÉ.
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 31stÉ 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 IÕve 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 toneÉ constant.
Melodic notes of two tones, maybe a G and a B. Pure notes, not sharp nor flatÉ
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. IÕm 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 2ndÉ God I
hate this! IÕve 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 isnÕt
working. Walking about, or just moving my head makes it feel like IÕve 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 donÕt but test results will not be back in time before my
revision surgeryÉ 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 donÕt have to
be loud noises, just staccato.
Right now it sucks to be me!
Thursday Sept 6thÉ 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 todayÕs 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 timeÉ I donÕt know why butÉ the doctor knows what heÕs 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 IÕll feel better. After awhile I take in a little broth, but now IÕm 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 trafficÉ 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, ÒIÕm not feeling so goodÓ 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 echoeÕs 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 cryÕs 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 6thÉ
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 surgeryÉ 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 7thÉ 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 walkÉ 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 IÕll sleep in my bed and report on the wake up procedure.
Wed Sept 12thÉ Each day I
seem to feel a little better, IÕm 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 sideÉ. 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. IÕd like to stop taking the medications as they do affect my
cognitive thinking abilities. IÕm 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.
SoÉ 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 14thÉ 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 16thÉ I donÕt feel so good today. IÕve 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 havenÕt
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 donÕt 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.
7:30PMÉ took a nap this afternoon and then went for a four bock walkÉ
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 17thÉ Last night
the roaring in my ear returned and I could not sleep. I eventually got up and
took a diazepam, donÕt 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 IÕll 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 aidÉ at least I would then be able to hear
much better in my remaining hearing ear. I think I should do itÉ 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 hospitalÉ 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 estimatedÉ 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 discountÉ which they refused to even consider because I came from
out of state. SoÉ 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 havenÕt 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 easilyÉ I seem to need quite
a lot of sleep. OhÉ and I have had to pay for everything a second timeÉ 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! IÕve made
plans to revisit Utah in two weeks.
Wed Sept 19thÉ 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. IÕm still in bed now at 5:00PM with the
roar thing happening in my ear. All that IÕve 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. IÕm 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 20thÉ 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 walkingÉ
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 20thÉ 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 lineÉ I cannot
do it. My balance is way off!
Tue Sept 25thÉ the last two nights I have had
night sweats. Both mornings IÕve 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 30thÉ Yesterday
I had my first ÒjobÓ 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 badÉ 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 improvementsÉ
but now not so much??
Mon Oct 1stÉ 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 dizzinessÉ 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 2ndÉ 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 3rdÉ. 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 6thÉ. 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 8thÉ 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 thingÉ 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. IÕll check to see if it happens while chewing regular food in the
future.
Sat Oct 13thÉ 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 wasnÕt 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 workÉ weÕll 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
easilyÉ. I need more exercise! And of coarse I have zero hearing in my left
ear.
Wed Oct 17thÉ 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 photoÉ.
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.
SoÉ 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
nowÉ only because I have so much experience that I can almost do my photography
jobs without thinking!
Mon Oct 22ndÉ 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. IÕll 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 IÕll 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 3rdÉ 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 vertigoÉ. Dizziness because I
do not have the room spinning effects.
Wed Dec 5thÉ 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 headÉ. 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 Òscreaming earÓ, at
least thatÕs 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
goodÉ. I would fail a Òwalk the line sobriety testÓ At any time! And my hands
sometimes shakes like I have ParkinsonÕs disease? I donÕt think I am getting
worse but I donÕt think I am getting any better either. Coming up is 14 days
straight of workÉ. 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
ÒcompensationÓ for the lost portion of my brain has been weird and unusual to
feel as it occursÉ 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 issuesÉ.
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 26thÉ 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 mistakesÉ
something I never had any problems with in the past before this operation. Most
of the 25th I spent sleepingÉ. Recovering from the busy day on the
24th.
Thur Jan 3rdÉ 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 rakingÉ 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
stapedectomyÉ. Get a stapedotomy instead.
ItÕs the same operation performed
with a lazerÉ. So the technique is much more precise!
Plus the doctor is more likely to be
younger and have a steady operating hand.
Fri Jan 11thÉ This
morning IÕm actually feeling pretty normal as I lay here in bed. The week has
been rather lazy and I havenÕt done much more than walk about. IÕve 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 IÕve 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 17thÉ. The last
two days have been a bit more dizzy than usual, I donÕt 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 É. I have over the past several days, had
to prepare an apartment for renting. Not very physically hard work butÉ busy
workÉ 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 IÕm 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.
July 2013É
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 donÕt know.
I still would rather lose a limb
than be in this condition!
Mon Sept 9thÉ 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 dayÉ 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 donÕt think people around me know
when I am having these difficulties andÉ 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,
andÉ get the shots I wantedÉ while there were so many people about,
and in places that at times were very crowded. I guess it was just too muchÉ 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 ParkinsonÕs 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 muchÉ 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 É2014.
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. AndÉ any motion of my head makes for a slight visual disconnect.
ItÕs 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 aboutÉ my
cognitive abilities are impaired by my brains inability to think clearly.
If I had to describe itÉ it would be
analogous to having a flowing stream of water being my brainwaves and thought
processes.
First thing in the morning before
moving aboutÉ the water of this stream flows unobstructed and natural.
Then when I start to move aboutÉ.
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
earÉ. Will my brain completely ÒcompensateÓ with the other side taking over
these lost functions? Or will that help at all? In other wordsÉ is there some
way to get over the dizziness that accompanies the motion of my head?
I think that I would call it
ÒnormalÓ although deaf in one earÉ. 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:
stapedectomy@johngaltproductions.com
Monday May 5th É2014.
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 yesterdayÉ. 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 1stÉ. 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 secondsÉ 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 É2015.
Today I went to the doctor for what
I anticipated was going to be a chemical labrynthectomyÉ
instead he has recommended a possible repair operation in a few months time.
And until thenÉ 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.
SoÉ. What to do? I still have loss of balance,
concentration and thought processes.
OhÉ. And I have an almost constant
light headache, just something I take two advil for every morning and again
many afternoons.
I donÕt knowÉ 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 20thÉ. 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 steepÉ. 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.
SoÉ. 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 sameÉ..
muscle spasms. Back to the point thoughÉ. At the end of the four days that I
was laying around and not moving aboutÉ. 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 exerciseÕs 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
WellÉ 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 visionÉ.. 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 headÉ.. 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 yesÉ.. 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.
OKÉ. 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 headÉ. 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 couldnÕt 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 stableÉ. 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 thingÉ. No more night sweats! I was just accustomed to having somewhat frequent night sweats. I slept with a towel by my pillowÉ. 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. SoÉ. More stable tinnitus, no more night sweats, lessening of my brain scrambleÉ still dizzy when moving about and still have disequilibrium most all of the time at this point. OhÉ 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 headÉ. Is not so bad with the disconnect of syncing my movements.
IÕm 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 wellÉ. 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 mindÉ. 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.
January 2017
Progress report:
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 Òbrain scrambleÓ 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 toÉ 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 milesÉ. 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.
SoÉ. 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 lipÉ 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.
September 2017
Things have not changed, for the
betterÉ or the worse. I get by
just fine and I donÕt 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 environmentÕs 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 stapedectomyÉ DONÕT 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 dizzynessÉ. 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
insanityÉ. 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 attacksÉ. 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.
SoÉ how severe was my fistula?
Initially, IÕm going to guess that mine was pretty
large. IÕm 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 thenÉ. The worse vertigo
yetÉ 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 ÒI needed to give it time to healÓ. 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 beingÉ Ò have something done immediatelyÓ.
My recommendations are thus based on this
experienceÉ 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 ÒsevereÓ. 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 anticipatedÉ in the round windowÉ 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 Òminor fistulaÓ were somewhat
manageable. The worst of the symptoms for me was a ÒBrain ScrambleÓ
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 wasnÕt 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 ÒtellÓ of an active fistula might be this Òbrain scrambleÓ 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 Òear attackÓ 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 ÒtellÓ of an active fistula might be visual
eyesight disconnect.
During my active fistula periodsÉ when turning my
head and visualizing on a subjectÉ. 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 ÒtellÓ, 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 hoursÉ. 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 earsÉ. Might cause a vertigo
episode.
SoÉ. 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 fistulaÉ
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
canÕt 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???
AndÉ
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 couldnÕt
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.
Thank You
Sincerely
Michael McFaul
Correspondence
can also be sent to me at:
Michael@johngaltproductions.com