1 year after surgery, is it ever going to get better?

[Frederic]

Hi all,

What a journey 

I had an acoustic neuroma removed (middle fossa) in August 2016.

Although I made a lot of progress in recovering it wasn't an easy road and it feels like things are standing still and isn’t going to get much better.

A week after the operation I experienced facial paralysis, my left side of my face was completely dead. This has gotten better with time and I am grateful that I got most of my facial movement back besides my eyelid that still doesn't close 100%. I wake up every morning having to wash my eye as the bottom and top eyelid are completely stuck together due to my eye tearing during the night. My eye also constantly tears when eating and my nose starts running uncontrollably.

It is winter here now and I suspect the cold weather is causing my headaches on the place where the hole was made in my skull.

My hearing on the right side was already at 40% with tinnitus before the operation and on the left side my hearing was still 94% with no tinnitus.  The acoustic neuroma was removed from the left side and the hearing in this ear is now down to 20% with worse tinnitus then the right side. The tinnitus also varies and some days are worse than others. I had to get hearing aids to assist me with my hearing and I am managing ok.

I have learned to live with these discomforts and I am grateful that I still have some hearing left.

What is really getting me down is the following issues, I have been back to the doctor that did the operation and my general practitioner and I get the same answer all the time, this is normal and can still improve with time.

- My constant fatigue, I am a programmer and I sort off manage, my eye is a great discomfort as it loses focus and this seems to get worse as I get tired, which happens every afternoon.

- My concentration and focus is also not what it was before the operation and I find it more demanding to concentrate and notice that I cannot perform the way I used to due to the lack of concentration and focus.

- The slightest physical exercise or activities are a big no as it takes up to a week to recover.

- I was going for vestibular rehabilitation for 2 months but it didn't seem to help but rather make things worse and I had to stop the exercises as it completely drained my energy levels. I have tried several times in the last 10 months to continue the vestibular exercises but it is still to draining.

- That brings me to the balancing issue, my balancing nerve was cut during the operation and I was told that my balance will get back to normal once my brain stops using my eyes to balance and starts using the remaining balancing organ on my right side which would take a couple of weeks to months. This has not improved at all and has restricted my activities tremendously. I cannot walk straight when there is limited light and even during the day I tend to sway when walking. I am also not allowed to cycle or ride my motorcycle anymore which is quite depressing.

I have been on anti-depressants since the operation to prevent me going into a depression as I suffered from major depression a few months before I was diagnosed with the acoustic neuroma.

I am very lucky to get a lot of support from my family. I have noticed that my boss at work is getting less and less accommodating and is losing patience with my recovery taking so long which raises more concerns as I cannot afford to lose my job.

I currently manage to make it through the day by taking a 2 hour nap when I get home after which I wake up, have supper, spend some time with my family and head back to bed at about 21h00.

Weekends consist of sleeping most of the time so I can make it through the next week.

After 10 months I still have hope that my situation might improve although the rate of recovery has slowed down a lot, they eye and balancing problems don't seem to get any better and the headaches seem to get worse.

Regards,
Frederic

[Kathleen_Mc]

Frederic:
Each of us have travelled the same path but with different rocks in the way.
What my doctor told me 6 weeks post op always stuck in my head " this tumor didn't grow in a short period of time and the healing won't end in a short period of time " ( or something to that effect).
The eye, are you putting in drops or creams ? (You should be, this is something I didn't keep up with and have scratches on my eye now).
Tearing while you eat, frustrating but manageable in the big picture isn't it ?
It is entirely possible the cold is causing your headaches, barometric pressure plays havoc with many of us. Tylenol if you must, or Advil or whatever your doctor suggests. Personally the only thing that truly helps me get rid of them is to stay in the dark until they are gone (since having children not possible however).
Hearing aids can be helpful for many, you may find the tinnitus is worse when your tired/stressed/drinking too much caffeine etc.
Fatigue, for some this gets better for some not. Before I had children I napped a lot !, now I go around dragging my backside. Nap when you can.
Concentration and focus are linked to the fatigue,  I think, I find when I'm well rested it gets better. I think over the years this issue has gotten better.
As far as physical activity, baby steps need to be taken and if this is still too much discuss this with you family doctor however, that being said, if you work full time maybe that's enough for your body right now, give yourself more time.
Balance, I still have the problem and it's been over 25 years, yeah it's not as bad as it was, I can ride a bike but I wouldn't dare try a motorbike. I walk like a drunken sailor some times. Dizziness goes along with that, if I close my eyes and put my arms out I almost  fall over, even today.
Depression and anxiety became my friend after my initial surgery to remove the AN, it has never left me and I'm maintained on an anti-depressant/anti-anxiety medication. The surgery disrupted the neuro-transmitters and although my doc thought it might re-balance it never has.
As far as your boss, this is difficult, the incision heals, the hair goes back and people think " oh they're all better now" but that's far from the case. Have a frank discussion with your boss, maybe provide him/her some articles to read so they can be aware of the reality you are now living.....would hate it see you having to sue them from wrongful dismissal.
Take care
Kathleen

[voron999]

Hi all,

What a journey 

I had an acoustic neuroma removed (middle fossa) in August 2016.
................
Regards,
Frederic

Frederic, sorry to hear all of this.
May I ask how big was your AN/how bad were the symptoms (so to justify this surgery)?
Thanks.

[v357139]

Frederic,
Sorry you are having these issues.  It does take time.  Your doctors may be right about needing more time.  But you may also want to get some additional consults.  They can either confirm what you've been told, or give you new information/treatment you did not have before.  Perhaps a highly experienced ENT or neurotologist.  And there are alot of different types of vestibular therapy.  One type might bother you, while another might be very helpful.  Very few doctors have all the information on everything that might happen post op, so it can pay to check with different doctors/therapists.  Jackie Diehls is top for facial therapy.  I am not sure if she helps with eyelid also.

Most of us can attest that this is a journey.  Each of our journeys is different.  I strongly encourage you to search and seek out additional resources.  There are a myriad of different doctors and therapists out there.  People on this forum can refer you to some of them.  The worst that can happen is they confirm what you've been told.  Or you may get some additional help.

Best of luck.
Rich

[feline]

Nope , just be thankful your are still alive.

[Frederic]

Hi all,

What a journey 

I had an acoustic neuroma removed (middle fossa) in August 2016.
................
Regards,
Frederic

Frederic, sorry to hear all of this.
May I ask how big was your AN/how bad were the symptoms (so to justify this surgery)?
Thanks.

Hi,

The AN was fairly small, just under 1 cm and it was busy damaging my balancing nerve causing some severe balancing issues which were just getting worse. My left eye was continuously flicking outwards and slowly moving back to the centre posiotion. I also wasn't willing to risk loosing my hearing in this ear as I was told that I could wake up one morning with no hearing in this ear and the hearing in my other ear was already deteriorating.

Regards,
Frederic

[Frederic]

Hi all,

Thank you for the responses, it really means a lot and gave me some hope, much appreciated 

[lark114]

Frederic,

I had my AN removed Aug, 2015.  I didn't start to really feel better for 1 1/2 years!  I was surprised how long it took, so don't be too hard on yourself.  I still felt terrible at 10 months.  Hang in there.  It will definintely get better.  I still have bad days here and there, mostly when I don't get enough sleep.     

[Mells]

Frederic,

I had my AN removed Aug, 2015.  I didn't start to really feel better for 1 1/2 years!  I was surprised how long it took, so don't be too hard on yourself.  I still felt terrible at 10 months.  Hang in there.  It will definintely get better.  I still have bad days here and there, mostly when I don't get enough sleep.   

Wow, that's quite a while. I hope it doesn't take me that long to recover!

[waypoint]

It's been several years since I've posted; but I decided to drop in today. Not sure why, but saw your post and wanted to respond.

Frederic, It will get better, but it will never be the same as before.  It's the new normal you'll have to deal with it. Just never give up. It does get better from day 1 but it will be ever so slow. There will be tuff days, but consider the alternatives.  I just had my 10yr AN removal anniversary last month. That's right,  Oct 1, 2007 2.5 cm left side. Facial paralysis showed signs of small improvement at around 2 months.  I still have some facial paralysis now, but others don't notice it.  I do, because I can tell. Still 100% death in my left ear, but I can still hear and have adjusted to SSD.  Balance has come back, but it took a lot of time and effort to train your mind and yourself.  At some point the other side will compensate.  I sold my fishing boat, for fear I would never be able to fish again. Three years later, I bought another boat and still fish to this day.  Just never let yourself fall prey to the negativity and despair. Continue to push yourself every chance you get. Even if it is for those small successes, like working to flare the nostril muscle on your nose just to try to get it to twitch.

Like I said, work to win the small battles and soon you'll be winning the war.  I continue to play recreational sports, ski, snowboard, boat, fish, and hunt. I also know my limitation, I sold my motorcycle cruiser and I haven't road my bicycle since.  I found that turning my head to look at vehicles behind me was never ever going to end in a positive way with me being upright.  That was more to put my wife at ease. Good Luck to you and all my AN brothers and sisters. Happy Thanksgiving!!!

[golfguy49]

Thank you for coming back to post.  Your post really helped me a lot, and this is coming from someone who just got diagnosed yesterday but I don't know the size of my tumor yet.  I need another MRI of the ear.  It is scary.  I'm 47 and had never even heard of this type of tumor before the last 36 hours.

I am so happy that you found a new normal that sounds like a full and active life, and I can only hope and pray at this point that I will be so fortunate as well.

[chicagorose]

Hi Frederic,

I had middle fossa surgery on March 13th. Everything was fine after surgery; however, starting on March 23rd, I started noticing some intermittent facial paralysis on the right side of my face, which is the AN side. Each day, the paralysis seems to get a little worse. I try to smile and I can see and feel that the left side of my face is smiling but the right side does nothing, but I can still feel my hands on my face. I'm also dealing with my eye feeling very dried out. I'm scared to death and don't know what to do. Was it explained to you why this happens? What did you do to get through this?

[LakeErie]

Rose, I forgot on my reply to your other message to say you need to see an ophthalmologist to rule out exposure keratitis, damage to your cornea from incomplete lid closure due to facial weakness. There are a number of steps that protect you from drying of your eye. Regular eye exams until the facial weakness resolves is important. Any ophthalmologist can do this, you do not need a specialist of any kind.

[Cheryl R]

Have you used any eye drops or gel?      These are all over the counter at drug and discount.    You do not need a drs order to get any.      There are heavier type for day use and gel for night time use.      Some have a preservative them which can bother some people but did not bother me.   Sounds you need these now and they may take a bit to get the eye feeling better too.            You do not need a dr to tell you first to use them.
                                                                   Cheryl R

[voron999]

Thank you for coming back to post.  Your post really helped me a lot, and this is coming from someone who just got diagnosed yesterday but I don't know the size of my tumor yet.  I need another MRI of the ear.  It is scary.  I'm 47 and had never even heard of this type of tumor before the last 36 hours.

I am so happy that you found a new normal that sounds like a full and active life, and I can only hope and pray at this point that I will be so fortunate as well.

Golfguy49, my case is very similar to yours in very many ways.
My AN a bit smaller and is determined to be very slow growing to not growing.
This is based on one year MRI observation.
I would think you can afford to do the same (observe for 1-2 years) and determine the growth status.
Basically, IF the tumor is small and NOT growing, this is a good case for "wait-and-see" approach - the safest approach in my opinion.