Surgery is on December 8th

[jdamiano]

Hi All,

I just discovered this board and I wish I had found it a couple weeks ago.  I haven't been online to research since the week I found out about this.  I was diagnosed with a medium size tumor on November 2nd - it's 1.5 x 1.8 x 1.5.  My symptoms started with slightly numb lips on my right hand side, then the numbness progressed to the right side of my face.  Over the last couple of weeks, the numbness has bothered my mouth, teeth, eye and seems to get worse as the day progresses.  They said radiation wouldn't shrink the tumor, could potentially make things swell and b/c my face is numb, they've advised surgery. It seems like every day I break down and cry because I wish the surgery was sooner.  Though I did talk to someone who had this type of tumor 6 years ago and lost hearing in his left ear so while I want the numbness to go away, I'm not looking forward to potentially losing my hearing.  I was told the tumor has grown into the ear canal yet my hearing is still 100%.  My questions are -

1) If you had a tumor that grew into your ear canal, did you retain hearing after the surgery?
2) If you had facial numbness, did you still have numbness or even paralysis after surgery? 
3) What was your recovery like?  How long were you off from work?  I have 3 kids under age 6 and I work full-time so trying to best prepare.  The surgeon said 10 days recovery, but I've read 4-5 weeks online.  I know everyone is different but wanted to get a sense from others. 

I'm really scared to ask these questions, but I want to at least be prepared.

Thank you for your support,

jdamiano

[CHD63]

Hi jdamiano and welcome to this forum of new caring, supportive friends .....

Being diagnosed with a brain tumor is scary at best, even if it is benign.

Please remember that none of us are doctors on this forum, we just have much information from our own experiences and research. So, to address your questions:

1) If your tumor was described as an acoustic neuroma or a vestibular schwannoma (same type of tumor, just two different names), it grows on or around the vestibular branch of the auditory nerve which runs through the internal auditory canal from the inner ear to the brainstem.  The facial nerve runs through this same area.  Your symptoms and the MRI give your doctors a pretty good clue as to where along this path your tumor is growing.  If you have perfect hearing now, it is possible to retain most, if not all of your hearing ..... IF you choose highly experienced surgeons.

2) Having facial numbness most likely indicates your tumor is touching your trigeminal nerve, which also runs through the internal auditory canal.  Again, depending upon the skill and experience of your neurosurgeon and whether your tumor is wrapped around the facial nerve or not is what will be the biggest factors as to post-operative results.  Many surgeons today leave part of the tumor if it is wrapped tightly around the facial nerve to preserve facial function.  Then they can radiate the remaining small piece to stop any future growth.

3) I will have to admit, I am very skeptical about a doctor who says it will be a 10 day recovery following a craniotomy.  It depends upon the definition of "recovery."  After my first craniotomy 20 years ago, I was back to walking/functioning with no assistance in about a week, but it took 3 weeks or more to resume my normal routine.  My first acoustic neuroma removal surgery (second craniotomy), it took me over two weeks before my eyes would totally focus and before I could walk without a walker ..... and it was a full six weeks or more before I was able to resume my normal routine.  My second acoustic neuroma removal surgery (third craniotomy), I was able to walk without assistance in about 10 days and resumed my normal activities in about a month.  I cannot stress this enough ..... it is vitally important to have the best surgeons possible for the best result.

As you say, everyone is different so it is impossible to predict one's recovery with 100% accuracy ahead of time.  You do not say where you are located, nor if your physician has had much experience removing specifically acoustic neuromas.

Many thoughts and prayers.

Clarice

*Note:  I edited this to correct the paragraph about facial numbness.  (Thanks, Cheryl, for finding this!)

[jdamiano]

Thank you Clarice!  I really appreciate your response. 

I'm very confident in the doctors I've chosen - Dr. Spetzler at Barrow Neurosurgical Institute in Phoenix and Dr. Weisskopf who is the ear doctor (cannot spell his title).  When I found out about the acoustic neuroma, I spent the next day off asking around to everyone I knew about different doctor recommendations. 

My hearing was tested and it's 100%, they say, but I'm not convinced b/c lying on a pillow in my room on different ears, my hearing is definitely not as good to hear tv in our upstairs loft/playroom.  I realize now that although I had an appointment wiht Dr. Spetzler and Dr. Weisskopf, I forgot to confirm the surgical approach - retrosigmoid or middle foscia so I will call tomorrow.  I have a pre-surgical MRI on Friday, 12/5, and they will determine the exact location in preparation for the surgery on Monday. 

I'm surprised by the recovery times that both doctors quoted - it seems a little unrealistic given what I've read, the guy I talked to who had this when he was 24 and your experience below.  For the last year, I've been doing boot camp at the gym 3x/week and in okay shape (better than prior years), but I'm 38 and I know this surgery is going to be a lot.  I'm going to stay with my parents after I get home from the hospital b/c I'm afraid my kids will be too demanding and I'll over-extend myself.  My husband can survive without me for a week or two and his parents will come over too to help with the kids. 

[james e]

Thinking about you this weekend. Post with us as soon as you are able to. Wish you good luck.

Jamaes

[ewhitese]

Thinking of you today, prayers for successful surgery

[Jill Marie]

Hope the surgery went well!  Look forward to hearing from you, family or a friend with an update!  Jill

[Mimispree]

I hope your surgery went well.  Please be patient with your recovery and hug your caretaker often.  I too was told, "My best patient went back to work in ten days, but you'll probably take six to eight weeks."  At four months out I'm still too dizzy to return to my physical work.  Read the posts on this site and remember all recovery are unique.  We all get a crash course in acceptance after this surgery.

Be well,
Mimi

[jdamiano]

They got the whole tumor but recovery has been hard. Thank you for posting.  I went home on Thursday, 12/11 to my parents house.  I didn't think to check this post and immediately wrote in the post-surgery area. 

I have slight to medium facial paralysis so the right side of my face looks funny when I smile or talk - I cannot stand it.  Dr Spetzler said it will get better within a year - its such a long time to wait.  He said they didn't severe the facial nerve but bumped it a lot.  Dr Weisskopf said to do facial exercises by massaging the face muscles to stimulate some feeling.  I've done that a little. 

I can't hear at all out of my right ear - it feels like I have an ear muff and a weight on it.  I've put ice on a lot just to numb the area.  the right side of my head feels so heavy.  They sent me home with 3 days of the swelling medication - 4 pills, 2 pills and 1 pill but I wonder if I should have taken more.  I haven't take oxycotin in a day or so - just ipubrohen.

I have an appointment tomorrow to get the staples out and will bring my 100s of questions.  I can walk, eat and don't have any dizziness.  Have a eye issue and have been putting drops in for scratched cornea.  My eye doesn't shut b/c of the facial problems. 
 
Please tell me the heavy feeling of my head is normal - 9 days post surgery. I think it is still swelling but have no clue.  jdamiano