what can I expect after surgery

[trudy]

Hi!  I am new to this and am having surgery at Univ of PA in Phila on Dec 16th.  My tumor has not destroyed my hearing, in fact I have very slight loss only to high frequencies on that side.  It is
pressing on my brainstem and has caused some imbalance problems which is why I complained to my
doctor in the first place.  I have been reading all the messages and am hoping for a good outcome -
the removal will be retrosigmoid and has anyone come out of that with their hearing intact?  I have
some facial symptoms - tingling lips and now a very dry mouth.  It seems that I am noticing things
that I never would have in the past.  My musles seem weaker and I have been a walking on a treadmill
for many years - so shouldn't all be due to the "aging process".  I am soon to be 53 - was always in
good health and although I am very grateful that this is a benign tumor - still scared of the surgery.

[Terri]

The very best thing you can do is to check and double check the credentials of your surgical team. Make sure they have done a minimum of HUNDREDS of acoustic neuroma excisions. If not, find a team that has. From all I've read, the House Clinic in Los Angeles appears to have the best record of success with minimal complications.

I was almost 52 when I had surgery, and my surgery was a complete success at removing the tumor (mine was translab). Although my facial nerve was monitored and kept intact during surgery, it still was traumatized by post-operative swelling and the stress of the 10-hour procedure (my tumor was pressing against the brainstem and had begun to grow vertically along it). I've struggled with recovery from facial paralysis for the last two years. I'm still regaining function as the nerve grows back, but it is very, very slow.

I do not believe the prognosis is good for preserving your hearing. Keep in mind that the tumor actually grows from the sheath of the acoustic nerve. However, I can tell you that losing hearing on one side has not been as difficult as I expected. My neurotologist fitted me with a BAHA (bone-anchored hearing aid), and it has really helped. Very few people even know I'm deaf on one side.

My neurotologist correctly advised me that the most important thing to me afterward would be facial function, and he and the neurosurgeon would be paying careful attention to not damaging the facial nerve.

Best wishes for a successful procedure.

[littlemissrory]

Hi...yes there are good outcomes from surgery. 

I had retrosigmoid surgery a year ago in Seattle by two brilliant surgeons.  Alot of people here will talk only of House, yet there are many others places as well.  Just make certain your surgeons have done alot of these surgeries and that you connect well with them.   

I, too, did not have hearing loss...in fact all my symptoms were balance/neurologic-  dizziness, nausea, vertigo,etc.  My surgeons were able to save my hearing nerve, and the balance and facial nerves as well.  Oddly, my AN side has better hearing than the good side.  My tumor was small (8mm)...so this can make a difference with the outcome.

As far as what to expect...everyone is so different that the best to say is be kind to yourself and allow your body to heal at its own pace.  Eat well, excersise, get alot of rest- everything to give yourself the best outcome.  Positive thinking is one of the best things you can do for yourself.  I also used (and still use) yoga, acupuncture, massage and chiropractic care.  Walking is so good in regaining your balance.  There are other tricks to post surgery time that make you feel better...a heating pad for your shoulders, gum (clears your head), walk along the walls brushing your fingers on the wall helps the body know where it is.

I was fortunate to feel so much better shortly after surgery.

I wish that for you, all the best.

Rory

[trudy]

Thank you both for your advice and well wishes.  My tumor is a 2.5 cm - considered the gamma
knife route - but we all came to the conclusion that it would not be a good thing because of
the size and location.  The tumor has more of a "tail" near the acoustic nerve which is why I
guess I hadn't lost hearing - apparently it usually is larger in that area.  The brainstem is already
being pushed to the side.  I was also concerned about the headaches post surgery that people
seem to talk about - but asked the surgeon and he said he puts the bone flap back which avoids
this problem.  I am having the surgery done at Univ of PA Medical Center and ended up there for
just the reasons you talk about.  The neurosurgeons in my local area don't see these too often
and Dr Judy and Dr Bigelow see them every week. I feel confident that they know what they
are doing.  I had really never heard of this before - don't know anyone personally who has had
this.  This site is a Godsend.   I have questions like how do you deal with the scar left behind
and how soon can you wash your hair or color it?  Silly things to think about, I know, but I've
had some time to think of this stuff while waiting.   Thanks again.   Trudy

[lynndlk]

Trudy

I had the same questions about washing and coloring my hair and the scar thing. It has been almost 5 months sence my surgery. I was able to wash my hair by day 5. And I colored it 6 weeks later. I just got my over all hair cut the same length as the surge and you can't even see the scar.
LynnDee

[littlemissrory]

Trudy

I too washed my hair on day five.  As for the scar, you couldn't even see it immediately after surgery.  They shaved very little, and my hair covered the area.  My surgeon used staples with glue over them- I have to look to see it in the mirror-hold my hair up and I can barely see it.  There are no silly questions...ask away, anything and everything! 

[Rena]

Judy,

Hi!  This is my first time posting.  I have a 1.2cm right side AN.  I'm scheduled for surgery Dec 1st by Dr. Jack Kartusch of the Michigan Ear Institute.  He has performed over 1000 of these surgeries so I am very confident in him.  I do not have any hearing loss on my bad side either so my surgeon decided that he would use the retrosigmoid approach also.  From what I understand, depending on the size of your tumor, there is still a 50% chance of losing your hearing or greater.  Each person is different as is each surgery, so hopefully you and I will be in the other 50%!!  I've just decided that there are worse things in life than having single-sided deafness.   Yes...it would be nice to keep my hearing, but it won't be the end of the world if I don't!  Maybe I'll be able to sleep better at night.  I can sleep on my good ear so I won't have to hear my husband snoring! LOL!

Keep positive and let us know how your outcome is.

Rena

[trudy]

LynnDee, Rory and Rena,

Thanks for the messages about the hair stuff.  My husband says I'm vain but what can I say?
What has anyone done about the anxiety factor - waiting for surgery is getting nerve wracking.
Has anyone any suggestions?  I'm thinking I am going to ask my Dr for a short-term script for
something because as time goes on I am feeling more and more anxious. What did you both do
and Rena how are you making out on that score?  I, too, want to be one of the lucky ones
who comes out without any deficit.  Thanks for the advise.
Trudy

 

[LaMar]

Trudy,
Dont worry about the vain comments - my husband said the same thing so i told him that i would just let the doctor shave all of my hair off and he freaked.  (My hair is halfway down my back)  He loves to run his fingers through it and said if i cut it off he would divorce me (jokingly of course).  they are just as vain about this as we are!
 
Good Luck!

[trudy]

Hey LaMar,
Are you the girl in the military?  I just read your other message and although I don't have any
first-hand knowledge of what the surgery will be like - that is as of yet, I hope that you will
have a good outcome.  Does this mean that you can no longer serve because of your
hearing - after the surgery is done?  Hope that your husband can make it home or you are
living near some family to help you out. 

Trudy

You have hair halfway down your back?  Mine is short in comparison - a little below shoulder
length - my sister jokes that I can do a "comb-over" - just wind it around and around!
Best of Luck - hope to hear that all goes well with the surgery.

[Rena]

Trudy,

My hair is past my shoulders and my doctor said not to cut it.  He said that the incision will be covered by my hair and no one will hardly notice!  That's a bit comforting to know.  As far as the anxiety....I'm not doing too bad.  3 weeks from today I go up to Michigan. (I live in Indiana) I'll stay the night in a hotel and then check in the next morning for surgery.  I'm just thinking ahead to Christmas and knowing that the surgery will be over with and I'll be able to enjoy the holidays without worrying about having a tumor in my head!  Also, praying helps to ease the anxiety.  I know that God will be with me and keep me safe...the same for you and everyone else awaiting this procedure.  God bless and keep positive thoughts!

Rena

[LaMar]

Trudy,

The military has told me that the probability of my being "medically discharge" is about 99%.  HTe 1% depends on my motivation to stay in the army and fight it.  It all depends on what exactly I lose in the surgery.  From what my doctors have told me, I will lose my hearing nerve and my equillibrium nerve definatly (sp- i suck) and possibly my facial nerve.  They are also worried about some brain damage because unlike most acoustic neuromas that grow towards the brain stem, mine grew up and is pushing my brain out of the way.  It is just a matter of how they can get to it once operating.  I would like to stay in the military so I will fight it, but I will never be deployable becasue I wont be ab;e to hear on the right side and that would be a hazardous situation.  I am only letting them shave as little as possible and will be doing the come over also.  My husband laughs at me for being vain.  I have even said that I would divorce him if I lose my facial nerve because I would not be able to feel him touch me or smile at him when he makes me happy.  Of course he thinks I am being crazy but it is the thing that I worry about most.  I dont have surgery til  December so we will see what happens.  Good LUCK!

LaMar

[Terrie]

LaMar,
I too had a tumor that pushed the brain over. No brain damage here ( atleast I don't think so  My kids were kind of young when I had the surgery done and their way of discribing what happened is "Mom had to have half her brain taken out! " silly kids!  Now it has just become a family joke.
My tumor was 4.5cm. I didn't have any time to decide what to do, the decisions were made for me in the ER. So defiantly check out your options.
Be praying for you.
Terrie

[LaMar]

Thanks Terri
Well last night the House Clinic called and due to the war they are taking military patients so i am seeing where that route will take me.  I think that my problem now will be the travel arangements.  I  was told today that the military would probably not pay for it becasue there is a qualified doctor here.  I am sending my mri's anyways and hopefully they will have better news for me sot hat i have some leverage to play with.  AND I ALSO FOUND OUT THAT MY HUSBAND WILL BE HOME BY THANKSGIVING!  I am so excited.  It has taken 4 months to get him here, but finallt the military thinks that this is a serious condition - red cross was a serious lifesaver.

[Battyp]

Hi Trudy,
  I had a 2.8CM tumor on my left side that affected my hearing and was twisting my brain stem.  I did not have much time between diagnosis and sugery.  So most of my stuff has been through trial and error.  You can not see my scar from the surgery.  I had retrosigmoid done to preserve the facial nerve.  I originally went to the University of Miami and they wanted to go in through the ear which would mean there was no way to save any residual hearing.  I do have the constant ringing which I've had since last august.  It is def. a pain and since I can't hear in that ear I am considering having that taken care of but have been told and read it won't guarentee the ringing will stop.  I could not tolerate light after surgery for about a month.  Which I was not warned about.  Lawn mowers, clothes dryers and garbage disposals made my head swim. Basically anything with a vibration or circular sound.  I felt better with an eye patch over my eyes as I got tired of holding my hands over them to shut out the light.  My teeth are sensitive on surgery side I've had no facial paralysis just numbness.  I"ve been told it takes a month to regrow and inch of brain nerve so the numbness will go away.  Seems no two are the same but the one thing I'm sure we all agree on is to be comfortable with your surgical team, make sure they have tons of experience.  Mine does 365 of these a year. I had to go to a major university hospital.  If you do have to travel coordinate with a local doctor.  Beside commodes and walkers can be your friends )  I'm still regaining my strength and walking really does seem to help but with balance problems its hard to find someone to walk with me.  I've talked to several people and we've all had different experiences, they had smaller tumors and had other complications so if in doubt ask!! Someone has an answer or a solution to make you feel better whether it's physical or emotional.

Kee the faith and my prayers are with you,
M