Please tell me recovery gets easier

[jdamiano]

I had my acoustic neuroma surgery on Monday, 12/8. I left the hospital on Thursday, 12/11. My incision wound hurts/feels really stuffy and is about 4 inches next to my right ear and I can't hear anything out of that ear - they said they didn't severe the nerve to ear but because of possible lack of blood supply, may not have hearing to right ear. It's upsetting and wondering if anyone had regained their hearing after that when it was just because of the temporary lack of blood supply. My facial muscles are weak and the surgeons said slight to medium facial paralysis that is expected to go away from anywhere from a month to a year. I am scared it won't go away. They said the facial nerve was not severe des but bumped- it's difficult looking at my face in a 1/2 smile. I had numbness before the surgery but not paralysis. I also had my eye lid that doesn't really close on my right side due to weak muscles. . I can walk fine and am fine with balance so am happy about that, just want this to get better quick. I know many of you who are on this forum have dealt with a lot of recovery issues. Please tell me it gets better. I really want to know if my hearing is going to come back or I'd this it? I have my follow up doctors appointments but am so anxious about it. Jdamiano

[Cheryl R]

I have always said the first couple weeks are hard and seem like forever but yes it does get better.     You just had major brain surgery!!!!        This is very very early in recovery.     Just rest and nap a lot and let the body do it's job to recover.     It is all swollen inside and may feel "weird" for quite some time and even maybe different from day to day.       You also can have days where you feel good and energetic and overdo and then 2 bad days.      How the hearing does may take some time too.      It is hard to say what the hearing may do.    It even may take a while to exactly know what it is going to do.   It is severed frequently but can't say that have heard it mentioned about the lack of blood supply causing hearing loss.                  We all recover at our own pace and be good to yourself now.    Are you at your parents house yet?          I have been wondering how you were doing.         Do you still have the facial numbness?          Make sure you are using some heavy type eye drops in the eye and may the gel type at night.     The dr is right too with it varies in how fast the facial nerve will heal.      The facial nerve is a slow recoverer and just have to let it do its thing.          Many of us know how frustrating it is when we want it to heal right now.                           Keep us posted how you do and know we are thinking of you.              Cheryl R

[jdamiano]

Hi Cheryl,

Thank you for your response.  I am at my parents recovering and so far these are my issues:

- right ear feels like I have an ear muff on and a weight on it.  I can't hear anything and it feels stuffy.  I wonder if this is swelling or if this is what it will always feel like.  Does anyone remember what the swelling felt like post surgery?  I already took the swelling medication that was prescribed for when I came home but it feels really heavy/huge.

- my face muscles on right hand side are weak/paralyzed - my surgeons said either 7 days to 7 months or 1 month to a year - its hard to accept this that my face will look like I am half smiling or talking only out of one side of my mouth - its hard to want to see anyone and I put my hand in front of my face if I am walking around my parents neighborhood b/c I am so embarrassed.  My husband said it is fine and is very loving but I cannot stand looking like this.  I haven't seen any friends and really don't want to.  One of the surgeons said it is slight to medium paralysis so I guess it could be worse.  I work from home and am on the computer/conference calls a lot but will eventually have to travel for work May to Atlanta to run a training program - there is no way I can do this.  I plan to go back to work on 1/5 just doing my conference calls and computer work from home.  I know having to travel and be around my colleagues will be crazy if my face still looks like this - so I hope this resolves in 6 months before I would need to travel. 

- b/c my right eye doesn't really shut, I've had a really dry eye and went to eye doctor today.  I need to put in eye drops each hour so that my cornea heals and have a follow up eye appointment on Friday.  I didn't anticipate an eye issue as a result of this surgery. 

I get my staples out on Thursday.  I have started to formulate my list of questions - my biggest question is my ear/face feeling so big and full and obviously, my face recovering.  I wish I was a patient person - this is the hardest thing I have ever gone through in my entire life.  jdamiano

[Mimispree]

I'm so glad your surgery went well!  Half of my head is completely paralyzed, and I too get freaked out now and then, and worry about what my husband feels about how I look.  When I finally had the courage to ask him about it, he looked at me and said, "You are still you.  I see my Mimi when I look at you not just your face."  Well, that was pretty cool, and I bet it's exactly what your husband sees too.  I'm sure your husband is so relieved that your surgery went well and you're still by his side.

I am not going to let my facial paralysis define me, but it is going to change the way I wear make-up! 

Give yourself a break and heal for a while. Everyone on this site has told me that it could take up to 18 months for the facial nerve to heal.  In the meantime, know that people love you for much, much more than your looks.

Love,
Mimi

[ANGuy]

There are plenty of sources for inspiration regarding any facial issues. 

https://www.youtube.com/watch?v=ahIG8z-5B50

[jdamiano]

Thank you Mimispree and ANGuy,

When I go on this forum I remember that everyone is here to help.  When I am not on this site, I get lost in my thoughts and sadness especially being around my parents.  They said my face doesn't look noticeable but really only when I talk but I am trying to "accept it" at least it supposedly being temporary.  I don't know what it will be like when I get home - see friends, other moms and our neighbors - I'm dreading it b/c I know I will put my hand up to my face.  My kids didn't notice but they are little and active/running around.  I just don't know what I'll do for work when I need to travel - there is no way I will be able to be around 100s of colleagues at my firm.  I will just have to cross that bridge in many months from now. 

Mimi - how long has your head been paralyzed?  I wonder if this is the super heavy feeling I have - it feels like I have a weight on my head and I cannot stand it. 

ANGuy - thank you for the link.  I'll look at it. 

jdamiano

[Susang8]

Hi jdamiano....it really will get better...

I had my Translab surgery on October 27 (6.5weeks ago) and the feeling of fullness and weight on your AN side will get better. At this point, my AN ear side still feels a little full at times but is much better than it was in those first days/weeks post-op.  I too wondered if that full heavy feeling would ever go away.

My hearing nerve was severed to remove the tumour so I am SSD but I had already lost most of hearing in that ear before surgery so the SSD has not required any additional adjustments.

I am sending you lots of positive thoughts...it will get better...just unfortunately not as quickly as we would like!


 

[bjkivel]

recovery will get better - Give your body time to heal.  Brain surgery has given you a "free" ticket to be extremely lazy for a bit - nap, rest, and nap again but make sure to do your walking.  No one is expecting you to do more than that.  Hang in there it WILL get better, you can do it!

 

[jdamiano]

Thanks everyone.  I'm starting to get some headaches that I think are started by coughing.  I cannot bare to cough and when I do, it makes my head hurt.  The air is really dry here in Arizona and its make me cough, especially in the morning.  I haven't taken anything other than ibupophren the last several days but this morning I took an oxycotin for the pain.  I was starting to feel better but then I talked on the phone for 30 minutes and feel like the headache came back.  I think I just need to rest the remainder of the day and will try to get a walk in later. 

On a positive note, I started to feel some nerve tingling around the outside of my mouth and while my lips don't look that much different, I don't spit out of the left side of my mouth while brushing my teeth as much as I did.  And, over last 2-3 days I have feel the nerve tingling on my face so maybe it won't be a year by the time my smile comes back.  I've been learning to cope better with talking and seeing people - I was very self conscious of it and now I'm getting better just talking and not caring if the person I'm talking to thinks I look funny. 

I really appreciate everyone's support.  Have a good Sunday!

Jdamiano (Julietta)

[ANGuy]

I see a big change in the tone of your post.  I don't know you personally, but it seems to me that this latest post is more who you really are (upbeat).  I wonder if the trauma of the surgery itself, or the dope they have to pump into you to put you under and control pain, could have lowered your mood.  Now that most of the drugs, and any chemical changes your body puts up in response to having brain surgery, are dissipating due to elapsed time, I'm thinking your mood is naturally elevating.

I'm glad you are feeling progress.

[Mimispree]

Hey Julietta:

I hope you are being gentle with yourself as your recovery continues.  That tingling on your face has to be a good sign.  Terrific!  Anyway, I was just thinking of you and send you good wishes for a BETTER YEAR in 2015.

Be well,
Mimi

[jdamiano]

Hi Mimi and ANguy,

I haven't been on here in a while.  I've been meaning too but have been officially home at my house since 12/23 having spent a week and a half at my parents house.  It's nice to be home but I've definitely taken more pain medication b/c I am running after my three little kids.  My husband has been helping but we've definitely gotten back into the old routine.  I go back to work on 1/13 so 5 weeks after surgery but thank goodness I work from home b/c I would not want to be going into an office with my face issues.  I somehow have learned to cope with the face (I guess b/c I can't see how ridiculous I look when laugh or smile - if you look at me, you really can't tell) and have been concentrating/praying that the hearing with come back. It feels strange to not have any hearing and I had to leave our neighbors watching the Ohio State v. Alabama game last night b/c everyone was screaming/yelling.  In any case, I'm in better spirits and pretty much doing everything I was - making breakfast, lunch, dinner, getting kids ready for the day and to bed, and dealing with all the house hold stuff during christmas and afterwards.  I've walked a little bit around the neighborhood but need to get walking more. I haven't driven yet b/c I'm scared with ear and eye that I put drops in every hour b/c it doesn't blink...I'm sure I can, just relying on my husband and others.  I haven't gone running b/c I don't think I could handle the head pounding. 

How are you guys doing?  How are any others coping with their recovery who may be reading this?  I feel alone sometimes around friends and family who don't truly understand how my head feels tight and heavy and ear feels like it has a 100 cotton balls in it with white noise.  And, when I sneeze of cough, the back of my head throbs...I need to take a break/rest for an hour or so each day b/c I need to give my eye and ear a break...does anyone else experience this or had this same experience? 

I'm so grateful to be on this forum.  I hope everyone had a nice New Years!

Julietta

[LakeErie]

As everyone on the forum says, every experience with treatment for this tumor is different. You are only 1 month after surgery so do not expect improvement to come quickly. Complications from surgery take time. In my own case, it was seven months, to the day, from the
surgery before  could walk without dizziness and longer before I could use my voice with any volume. It was almost 18 months before I could say I really was better, though I did improve at each point between surgery and 18 months.
We can only recover as fast as our bodies and brains let us. Rest is is as important as patience. Some complications do not get better for some people, but we do adjust to them. At first we often we underestimate our abilities to compensate for lost functions over time. Taking things a day at a time post-surgery is helpful. Good luck.