09/23/2006 @ 09:48PM
HELP! acoustic neuroma information
My health has been very poor for some time now.
In April of 2004 I had an acoustic neuroma tumor located on the optic nerve behind my left ear, in
my brain.
It caused brain compression and zero speech recognition for almost 1 year before it was diagnosed.
I had went to my family doctor numerous times and was sent away with prescriptions for clearing up
fluid in the ear, or ear infections... This ended up not being the problem... Ultimately I went to
a doctor who referred me to a neurologist who in turn asked me to take an MRI. The results of this MRI
showed a golf ball size tumor in my head.
After much research and reading about treatment options I decided to have the tumor surgically removed.
for 8 months prior to the actual surgery I was experiencing extreme hearing loss, extreme short term memory
- I could write myself a note to remind me to be somewhere at lunch, and forget lunch altogether as
well as fail to remember to look at the numerous notes that I wrote to myself as reminders. I was lost, and
everything was falling apart. Mainly due to the memory loss and lack of communication that I was not
having with any friends or family members due to the severe hearing loss and zero voice recognition.
I could hear tones and some voices, however they were very muffled and distorted... This made the right ear (the good
ear) get confused and made me unable to hear, listen, or even interact in any type of conversation.
April 2004 comes and I am a stressed out young man. 23 years old and told that very serious outcomes could happen due to
this surgery that I just signed up for...
#1 I was told that there as a 99% chance that the surgery would sever the hearing nerve, making me completely deaf in my
left ear for the rest of my life.... I wouldn’t know if this would be the case for up to 4 months after the surgery,
because some reports show the nerve can grow back in extreme cases...
#2 I was told that I had a significant chance of having at least parcial facial paralyses due to the nerves that were
also close to the nerve site, This would make it impossible to move half of my face and function one of my eyes such as
close it or have tears produced....
#3 There was a chance that I could pass away during the surgery as this was a specialized surgery with not enough
statistical information to comfort me regarding its outcome... The need to move forward with this type of surgery was
that the tumor had grown so large and was creating so many complications that it was causing allot of brain compression
and eventually I would certainly die without the surgery.
I had the surgery and ended up in Intensive Care Unit for 6 days (as scheduled) when I awoke from the surgery I
literally had ZERO hearing in my left ear... a completely MUTE sensation, something I had never experienced before... The
other ear, the good ear was bombarded with high and low pitch noises as my head had just gone through a major trauma
everything was off.
The pain was incredible. Nobody could have braced me for the type of pain that I was going through.
Endless non-stoppable pain, My body was rejecting most foods and fluids along with medicine... The movement of vomiting
intensified the head trauma more than one could imagine. Approximately 10 days into my hospital stay I was released to
bed rest at a family member’s home... I could not turn my head, I had throbbing pain in my head, I had intense migraines,
a very sensitive stomach, and very little balance because of the ear / head trauma.
Throughout several weeks I layed in bed and attempted to take medicine prescribed to me to help with all sorts of post
surgery problems. After some time I was able to walk on my own without falling, although the act of standing up caused
my head to immediately throb with pain from the blood rushing or quickly changing.
I went back to work within 2 months of the surgery and was having allot of troubles completing my normal tasks and having
allot of difficulty hearing people on the telephone as the remaining office talked in the background and had normal office
noises....
Several weeks after arriving back at work, I decided to go self employed... This seems to have been a mistake.... I felt
as if I were getting progressively better with all of my symptoms that were not permanent. I managed my business for 1
year before I started to feel ill again... worse than I have in awhile... Less energy, poor balance, depression, very
upset stomach, acid type feeling in stomach, very poor sleep, often unable to fall asleep, definitely unable to stay
asleep, and usually waking up no earlier than noon the next day. My business was rapidly falling apart, and my employees
were taking advantage of their boss not coming into work until noon every day. My business failed at the time I felt
worse in my recovery period. I had begun vomiting every single day, many times a day. I head headaches throughout the
day, severe migraine’s I was trying other medicines from my doctor in hopes that I could bet myself back on track but
almost all of them created additional problems or triggered the vomiting even more aggressively. I realized that the
one thing that was taking away the head trauma pain, vomiting pain, and allot of other generic pain was pain killers.
Percocet is what I presently take to keep this pain to a minimum.. I also take a large amount of Ambien 10mg to help
with the sleep problem.
The Percoset has helped tremendously, Although I find myself running out of it every other month before my refill is
due.... and this is not because of abusing it, it is because I took a dose of it every time my body triggered pain and
discomfort... some months are worse than others.....
I am nervous that I am taking a medicine that is not going to help me in the long run and looking for any advise.
The Ambien definitely helps with sleep but has caused major problems in my marriage because, it to, has been a medicine
that will run out almost every month prior to refill - it causes sleep walking, sleep eating, and other problems.
This situation had completely alienated me from most of my family and 100% of my friends... I am never in the mood to go
out to dinner, movie, social functions.. anything.... Home is my place where I need to stay and try my hardest to not
suffer.
This also has taken a tole on my marriage.
I feel week and depressed some of the time, and energetic and full of great idea's on very rare occasions other
times.....
I have fallen into months and months of feeling horrible pain and at the time I just consider it normal and something
that has no fix for it. I feel like there has to be something that I can do to adjust back to normal life, relieve my
pain, and have energy.
I want to know if there is some sort of problem that I have not diagnosed that would explain why I now am basically a
couch potato. Is there medicine that I can try that will resolve what I consider my final problem of motivation and
laziness? The difference from before the surgery and now is NIGHT and DAY... I want my energy back, I have tried energy
medicine such as Provigil which only makes me sick. Is this normal for an acustic neuroma post surgery patient to be
going through all of these symptoms, and are there any known cures for these problems?
Please reply, I would greatly appreciate ANY advise!
postoptaylor@gmail.com