Are you still having problems after surgery?

[er]

HI
It will be 2 years this March 28 and I am still having problems.
I am a victim of an Acoustic Neuroma and I'm frustrated. I am 56 years old female with 2 jobs one as an instructional assistance working with class rooms of children and the other as a receptionist at a small machine shop.
On March 28,2005 at Oregon Health Science Hospital, I had a medium tumor removed from my left side of my brain. My husband and I figured it took 5 years to get the size it was since we were told they grow 2 mm a year. It took them 6 hours to remove the tumor, the doctor said the tumor ( and he showed me with his hands, by making a fist with one hand and wrapping his hand around his fist.) had grabbed my brain and they had a little problem in taking it off , the process was  very slowly so not to damage the nerves. It will be 2 years this month on the 28th and I still have a crooked mouth and smile, my check muscles still will not wrap around things, I still cannot hear out of my left ear, the ringing in my left ear is 24 -7 and loud, I still lose my balance allot, I don't know what direction the noise is coming from, crowds really do me in at these times ,I still have no tears out of my left eye and they burn allot sometimes, I can not read (you call it double vision I call it blurry),the eye lid still doesn't close as quick  as the right lid, ( they did put a gold piece in my left eye lid) the bad taste is still there but not as bad as it was ( It tasted like I had a  battier to my tongue). I get short term memories , when given instructions I have to process in my mine what they said and how to go about on doing it before I accomplish my task or I have to write it down so I can remember the instructions, sometimes ( for example, I forget to leave the stove on and walk away even while I'm cooking , or forget which direction I'm suppose to turn the faucet when I get into the shower thank goodness it does not happen very often, and so on.........) I am not able to do very much at one time because I get tired so fast. Oh one more thing every so often my speech goes, my neighbor described very well, my muscles will not work to shape my words, when I get like this, I know what I want to say, but my mouth is not able to say the words. My jobs  have suffered because of all this.

[nancyann]

Hi er:  I had retrosigmoid 6/06, & since I ended up with facial paralysis, I can say, "yes, I'm still having problems."
         I do, however, feel blessed that we have this forum - I didn't realize there ARE others out there in the same boat,
         they have given me so many great ways to deal with EVERY issue I have, not just the paralysis,
         & I thank God for everyone on this forum.
         My balance is getting better little by little;  the single sided deafness doesn't bother me as much as others,
         I figure as long as I have 1 ear working I'm okay;  luckily I have a great group of co-workers/friends looking out for me.
         Oh my God,  BAD TASTE is putting it mild, I always have listerine breath tabs with me,  food doesn't taste, I miss my
         chocolate the most !!!! (and the metallic taste is worse than immediately post op).

         I expect to be dealing with ALL the other issues for a long time, but as long as I know I have the people here to fall
         back on, I'm one lucky camper !!!!!!

         Believe me, it IS frustrating, I certainly have bad days, but I find them fewer & fewer, & it IS because of this site.
         You guys are my antidepressant !!!!
I wish you all the best er,   Nancy

ps:  After burning a pot once on the stove, I ALWAYS set the timer now just in case......

[Derek]

Hi Eve...

I am so sorry that you are still having problems some 2 years after the resection of your AN. On the basis that you did thorough research relevant to treatment options that were available and your ultimate choice was based upon your research and the best possible professional advice, it does seem most unfortunate that the outcome has not been what you might have expected.

I just wondered if, in retrospect, your choice of treatment would have differed?

 It seems to be one of those unexplained aspects with the treatment of acoustic neuromas in that no two patients are alike and there are no guarantees as to the outcome of whatever the treatment option. However I do hope that your post treatment side-effects do eventually show a substantial improvement.

Regards

Derek

[Jim Scott]

er:

I want to join the other posters and express my regrets for your ongoing post-operative complications that are obviously damaging your quality of life.  I know these kinds of post-surgical problems are not always avoidable, but they seem to be lingering a long time, in your case. 

I assume you've had some post-op visits with your neurosurgeon and PCP as well as follow-up MRI scans over the past two years, which is pretty much standard procedure.  I'm curious as to how your doctor(s) respond when you present with these continuing symptoms, two years out.  Despite what I'm sure were your surgeon's best efforts, your symptoms indicate that some nerves were affected by the AN and/or it's removal.  Single-sided deafness is very common following AN removal surgery.  Some procedures have a better chance at preserving some hearing ability in the affected ear, but that is never guaranteed.  Ongoing balance, memory and eye issues need to be addressed, not simply endured.  I suggest, not as a physician - which I am most definitely not - but as a fellow AN patient, that you insist your doctor(s) acknowledge your obvious post-op problems and suggest some sort of therapy, at the least.  Two years is a long time to still have these life-impacting issues.  Too long.

[er]

Thank you nancyann, Derek, & Jim Scott for you comments,
I am tickled that I found this web site; I feel now that someone understands
I went up to Portland for my yearly check up at OHSU a 3-hour drive up for me today.
My Otolaryngology said, my MRI looked good,
For my hearing I could get a bolt screwed to my left side of the skull and have an instrument placed there I do not recall what he called it and it would have my good ear hear or send the vibrations to the left ear? He came me a DVD to watch to explain the process.
 For my balance he recommended I go for therapy, the bad taste, well it's still there because a facial nerve penalization, my eye I have to keep putting eye drops, and for the speech and memory I have to go to a neurologist he doesn't think it has nothing to do with the acoustic naroma. I do have an appointment with a neurologist that social security assigned on April the 11th,  I too decided to take my family doctors advice and signed up for social security.
Thank you so much for your replys

[matti]

Hi er - I am almost 9 years post op and while I still do have some AN issues, I have come a long way and doing well. My most annoying problems continue to be with SSD and short term memory and other cognitive issues. Last week I was calling a friend and picked up the remote control,  punched in the number and put it up to my ear. I think the dog was even embarrassed for me LOL and the only thing I could do was laugh.

 the hearing device you are talking about is called BAHA, (bone anchoring hearing aid), it is a wonderful device and there are several forum members who have them and I am sure will help if you have any questions. I have a TransEar which works along the same theory, except there is no surgery involved. It looks like a regular hearing aid and sits in the bad ear. It is new on the market, so not many ENt's and audiologists are familiar with them just yet.

hang in there, it will get better, I promise!

hugs,
Cheryl

[er]

Thank you Mattie
 I think I will check into the Transear, I did check on the Baha and it just not to appealing, I am a big coward. I’m  sure glad there is a few of you that are having some of my problems it's not all in my head. 
I spoke with my doctor Friday about the hearing and he was very sympatotic and understood over the fact that since I work in the school district that if the school caught on fire I would not be able to rescue a child because I would not know where the voice would come from or if I went on a field trip and a child got lost I would not be able to know where they would be at.

[tony]

Sorry to hear of your troubles - the memory and speech thing may very well be
AN related. Basically your balance has had to compensate
for all the changes
this overworks other/new/unused parts of the brain
- bit like if the phone rang every 2 mins with the instruction "breath-now"
It would overload you - this consumes the short term memory
and makes many of us/and you absent minded or similar
Basically as you work and train the balance harder
- it will get better and use less "run time"
Its a long road for sure - but well worth it
Speech is a little harder to explain
- but the facial nerve is involved somewhere
 I have noticed wrong tense or structure does happen
at speed - I was a motor mouth - but I have had to slow down
...strangely nobody seemed to complain...
In this area and any job career thing
I suggest you invest time and training in a sector
where any disadvantages you may have
are not really key to the role
play to your strengths ?
Best regards
Tony

[Jeanlea]

Hi er,

Sorry to hear that you are still having problems.  I am a teacher in an elementary school.  I had my surgery in Sept. of 05.  I came back to the classroom on Oct. 31 of 05.  I thought Halloween was a good day since I have facial paralysis.  I also have no hearing in my left ear and cannot tell where sounds come from.  It usually isn't a problem for me.  I did get the TransEar which gives me a bit more hearing.  I wasn't too sure it was helping until I forgot it one day!  My balance has gotten pretty good.  I think weaving around the desks and students has helped me.  I am also one to push myself.  I'm proud to say that I'm now running 3 miles a day.  Not setting any speed records, but just the fact that I can run makes me happy.  I have times when words come out wrong, but I'm not sure if that is the AN.  I used to do that pre-AN too.  I find that the students are other adults at school are very helpful.
Hope you are able to find some relief for your problems.  I find just being part of this forum is helpful.  Being able to share problems and compare notes is so helpful.  Glad you found us.

[TP]

Hi er:

I am so sorry to hear that you are experiencing these difficulties. I also lost my hearing in my left ear, have a gold weight in my left eye as well as no tears and my left side of my face has facial paralysis. I also don't care for large crowds anymore due to the loud sounds coming at me from all directions.

I read that you are tired a lot but you do have two jobs. That is tough. That is a major accomplishment! Good job! Probably the last thing you have time to do is exercise but I truly believe getting outside and walking or joining a gym will help you feel so much better. I found that getting my body back in movement, strengthening my muscles helped me heal tremendously in particular, my balance. Please check with your doctor first before doing anything like this but find a place where you feel comfortable and start with a program, or walk but I suggest you walk with a friend until you feel your balance has improved. If you are not already doing this you may be even more tired at first but eventually you will see small improvements and when those occur take time to celebrate!

Setting small goals and achieving them seem to help a lot for your confidence and attitude. Hang in there 

[Pembo]

Hi there. I'm now 38 and almost 3 years post op and yes I still live with the after-effects of AN surgery.

I too have SSD, I did find the strength to have the BAHA surgery and it was a great decision. It has helped tremendously especially in those large group settings. The doc said that the surgery was a breeze and it was, I went into the OR at 9 am and I was back home after an hour's drive by lunch. I had a mild headache after surgery. It was worth it. My anxiety was worse than the surgery for the BAHA.

I have facial paralysis and numbness. I am told that people don't notice the paralysis but I sure as hell do and it scares to me think that people just think I look this way! I did have facial retraining and it helped a lot. I went from 31% facial function to 62% in three months.

My eye doesn't close all the way yet either. I'm looking into a gold weight. I use Restasis twice a day (prescription eye drop) and it works great! My eye does not get sore anymore. One side effect of Restasis is temporary burning when you first put the drops in but it is temporary, 20 mins maybe.

My short term memory is better but on occasion I do still mess up words. It's as if my brain is working faster than my mouth. And sometimes I can't think of the right word. Also creative thoughts are harder to come up with than they used to be and I have difficult time making decisions. All of these things came easily to me before surgery.

You are not alone! I still have problems too and somedays it really upsets me and I just want to be like I was BEFORE surgery! However my tumor is estimated to have been there 10-15 years and looking back it had been causing minor problems for a long time. Most notably I was ALWAYS tired! I have more stamina now even with 3 kids.

This forum has been great for me. It's definitely a place where I can vent my frustrations and people really do know what I'm going through and no one here is going to tell me "but you look good". (I hear that all the time~as if how I look will make my mood any better?!)

It is hard to accept this "new normal" and some days are still harder than others. Stay strong and pm me if you'd like to talk more.

Barb

[Omaschwannoma]

Er you did not mention if you had vestibular rehab after surgery.  I did, I am 2+ years post op retro sigmoid, and it truly helped, up to a point.  My vestibular nerve was removed so as not to send "weird" signals.  The right vest. nerve has better chance of taking over if the compromised nerve is taken away.  No I do not have my balance back 100% as I recently found out why.  My "field of vision" won't hold still and "jiggles" when I turn my head to the right.  I was diagnosed with nystagmus, fancy word for your eyes don't move with your head.  I was thinking there was a bigger problem developing--I now can feel better?!  Anyway, I am comfortable with occasionaly bumping into my dog on our walks, SSD and looking in another direction searching out the voice, and now know where my exhaustion comes from as my brain is overloaded.  Otherwise known as brain fatigue.  Here is a good site to read about and hopefully you will find answers too.  http://www.theblackriver.net/wobbler/wobblercognitive.html#10
I use eye gel for occasional dry eyes and ibuprofen for my twice monthly headaches.  As for the facial nerve problems, I know someone else can help you with that, my symptoms are very mild to non-existant regarding facial nerve damage.  Keep writing and asking your questions as this forum is here to support you.

[er]

I have just been a new person for a few days, but I have already spent 4 hours & 30 minutes with a great group of people.I can not seem to stay away from this site.
Just talking to you has made me feel good. God bless you all.
Shame on me I even stop going to church because I can not focus on the sermon over all the pollution of noise and every one seems to be understanding, I think my most understanding person is God.

[ppearl214]

I have just been a new person for a few days, but I have already spent 4 hours & 30 minutes with a great group of people.I can not seem to stay away from this site.

kinda has the same affect on me   OH, wait... I'm a webcop here

thrilled to have you here.. and as you can see, we don't bite

Hang in there.. and hoping you find the strength from us to return to church as well (or whatever is your best mode for worship).  To me, it really does help to build our inner strength in times like these when we need it... besides knowing we have others here that care

Hang in there!
Phyl

[Omaschwannoma]

The Great Spirit is everywhere, even here!  Working through us to connect to you.  The Great Spirit would be "uppity" if the "church" is the only place to dwell.