Is this normal?

[postoptaylor]

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

[tony]

I was sorry to hear of your extended problems. In most cases folk recover
quite quickly from AN treatment - however yours was quite large (4-5cms ?)
there are a few at this size where everthing is back to normal in a couple
of weeks - and there are some that are not.
I wouldnt say it was normal - but some of us have been here
and can help,  (mine put me in a wheelchair for a month).
Unfortunately you now have to reconsider your approach to getting well
- basically it is going to take some time and one step at a time.
You have been hit by a magnum round - only on TV do you get
up and a week later and you are rock-climbing or hang-glideing.
1) In regards headaches - search on the list there are some good articles/posts
which cover both the reasons and the cures
2) In regards depression - both depression and post-op depression are covered
(and are not uncommon) again use the search function.
The cognitive function - that is ,fast thinking/reasoning will be sluggish
for a while due in part to the re-wireing that has taken place
Tiredness, stress and fatigue are real for you at this time
- so not really a good time to run a business .
I think your brain/nervous system was/is overloaded
You should not really push hard now - take it one step at the time
I think you were trying to do too much, too soon.
I understand - you wanted your life back - we all do.
Consider this, 50 yrs ago folk didnt survive that sort of OP
- the only post-op issue then, was where to put the headstone....
3) Its not unusual for someone going through all of this
to cause chaos in the personal relationships
my suggestion is you start counselling - AND NOW .
Your wife may not understand all the issues - and you may not either.
- when you have some posts/stories from the group that seem similar
let her see them.
All of this has been tough for you - but it does not have get any worse
you can turn this around - it might take 12mths
Sorry for the lecture - any other questions please ask
Best Regards
Tony

[Captain Deb]

Postoptaylor, I have severe headaches, too, and In my research, I learned about rebound pain caused by over-use of narcotic pain meds--percocet is one of the worst culprits.  Do a search on you computer for "rebound headaches" and you will find a lot of information. Surgeons are not pain specialists and tend to over -prescribe pain meds because they don't know what else to do. Have you been to a pain clinic or a headache specialist? This is the route I took after spending the better part of 2 1/2 years in bed with a headache. I was over-using pain meds and they were triggering stomach problems as well.

 I now see a headache specialist at a headache clinic and I am so much better, I can hardly believe it! I had trigger point injections in my neck and head, learned to give myself injections of a non-narcotic med called Imitrex for the really bad ones, and take a med called Neurontin, also a non-narcotic. My headaches are now managed by about 75%.  My next step is botox in the head, but so far, I'm doing well enough that I don't think I'll need to do it. You will need a referral to get into a clinic like this--all you need to do is call your doc and get one.

Once my pain lessening, my depression started clearing up and so did the memory problems, which are exacerbated by narcotic use. Percocet is a dangerous, addictive drug which should never be used long term especially when there are much safer methods of managing pain.
Hope this helps.
Capt Deb

[nannettesea]

PostopTaylor-
Can you please put in your signature what approach they used for surgery and where you had it?  This always helps....
Have you had follow up MRIs to be sure there is no tumor regrowth?
We can ALL relate to depression, fatigue, headaches...meds can help depression for sure, Capt Deb and Janet have good info for headaches, Tony is good with all sorts of info...

We FEEL for you.  Hang in there.  Have you filed for disability?

Nan

[Captain Deb]

PostopTaylor-
Can you please put in your signature what approach they used for surgery and where you had it?  This always helps....


Nan

Refer to the "helpful tips" thread  in the welcome area

Cpt Deb

[Janet]

Post-op Taylor,

Pain is hard on you mentally as well as physically. It sets off a chain of reactions in your body resulting in depression, difficulty thinking as well as many other problems. You need some help. The good news is that pain management has become a field of medicine in it's own right and you will find expertise, understanding and relief out there.

I went to a headache neurologist after a year of headaches. I can't tell you how releived I was to find someone who knew exactly what kind of headaches I was having and how to treat them. Because you are taking Percocet for your headaches it leads me to think you are not getting the specialized care you need and is available.  Treatment seems to be tailored to the individual. ANers on this site have found relief with various combinations of anti-seizure meds, migraine vascular meds, trigger point injections and Botox to name a few.

Do you live near a large medical center or a university with a medical school? Many have headache clinics or pain centers. I don't know what kind of insurance you have or if you need a referral but I would try to get evaluated at one of these clinics. If you are referred to a general neurologist I would try to get to a headache neurologist or pain clinic instead. Maybe someone on this site knows of a place near you.

Only you know how bad you are feeling. There is no lab test that can show others how serious your pain is.  Keep pushing for the proper treatment. I am confident that your life will improve when you find the right place for treatment. It might take some trial and error and a little time. There is no way your family and friends can know how awful you are feeiling unless they have gone through something similar. I hope you find some comfort in knowing that there are many people on this site that do understand how severe these headaches can be and have found relief.

I am so happy that you posted on this site.

Please keep us informed,   Janet



 

[Crazycat]

Taylor,

        That's quite the tale you've told! My heart goes out to you! Most of us here in this forum are middle-aged. There are a few though that are on the younger side as you are. Ironically, it seems, that the younger a person is that has this condition, the more aggressive and complex their situation is. This is not to say that older people always get off lightly. Not at all.
         A great deal of the information that you're seeking has already been written and posted throughout the different catagories in this forim. Here's a tip: If you happen upon a subject or especially a person that is expressing something that you're especially interested in, then click on their underscored, user name and scroll to the bottom of the field where it says: Additional Information. There you will see the second, underscored option: Show the last posts of this person. Click on that and it will display every post that person has made chronologically organized from the most recent back to the beginning. You may have already dicovered this.

   Please keep us posted and take care!    Paul

[chelsmom]

Hi Postoptaylor,
My daughter is Chelsea.  She just turned 18 in Aug. and found out in early June that she had a 6cm AN that had displaced her brain stem into the left side of her brain.  She had 2 surgeries, a total of 30 hours, to remove the tumor.  She also had a shunt placed in her brain to help the fluid drain and control the hydrocephalus.  She was in the hospital from June 16-Sept. 16 with 2 trips home of only a couple days before she went back.  The symptoms that sent her back were headaches and vomiting.  Each time she returned to the hospital they found that the shunt had failed and they put in a new shunt.  She has 4 shunt revisions.  So far, so good on this last one. 

The symptoms you seem to have sound like what she was suffering from.  Have you been checked to see if you have the slightest amount of hydrocephalus??  This can create terrible problems.

While in the hospital she, like Capt. Deb, was being over medicated with narcotics and anti nausea meds.  The more pain she was in and vomiting she had the more meds they gave her including percocet.  This went on for 10 days.  She was in horrible pain.  Finally her neuro-surgeon took her off all meds except Tylenol.  It worked!  Within 12 hours she stopped vomiting and her headaches went away.  While in rehab she was getting vitamins, pepcid and regalan for her stomach, and ambien.  Every morning she woke up with nausea and vomiting.  They started the elimination game with the meds and vitamins.  Still she would be sick in the morning.  The last to go was the Ambien.  When this was eliminated she quit vomiting and no more nausea. Hopefully you can get some help finding meds that will help you and not make you sick.  She has also been put on low dose Prozac to make sure she doesn't sleep into depression.  Her neuro-surgeon said that depression is a common side effect after all that one goes through with this type of tumor and hospitalization.  He said it keeps the mood up which helps with the healing process.

Good Luck.  We'll be thinking and praying for you.