I didn't know it was going to be this hard

[Corilyn]

So, I don't really know how to do this. But I am going to try, because I think I need too, in case on the off chance that it can help.  I had a 2.5 centimeter AN removed on January 4th, 2013 at Massachusetts General Hospital in Boston MA.  I had just turned 32 years old.  My hearing in my left ear was very diminished prior to surgery so there was no saving any of it and I knew that going in.  I also knew that my balance nerve on my left side would be severed during the surgery.  This, I was told, was minor and my right would compensate for the lack of a left.  (I did not know, however,  that I would virtually have to learn to re-walk again).  I was told that this was a routine surgery that they do all the time.  I went into this surgery with no fear.  I woke up from this surgery with a completely paralyzed left side of my face, and a complete inability to walk.  My right arm was paralyzed for a short time as well.  I was sent home after a week in the hospital, and got a metal implant in my eye a month later.
I returned to work 2 months after my surgery with a cane and a screwed up face.  I just kept moving forward.  I attended the needed vestibular therapy for walking and balance.  Learned that I couldn't filter noise effectively through just one ear, so I took public settings in stride and had to begin explaining to people that they need to get my attention before talking to me so that I can look at them or make sure that I am on the correct side.  This was exhausting...and embarrassing.  I stopped going in public.  I could no longer do the level of work that I used to do and left my job (in child protective services) and took a job in which I was working completely alone in an office for a new welfare reform initiative.  After 9 months I could not do the level of work, but I could not be alone.  It was feeding my depressive isolation. 
And so my story goes until today, where I am still struggling with finding a job I can do and still be able to be present for my husband and my children.  I am failing at life.  I get major headaches, my dead eye throbs and I get periodic whooshing so intense in my dead ear that it makes me vomit.  I struggle with my memory, which used to be a steel trap and I can not multi task like I uesed to.  I want to be stronger than I feel, and I never want to whine.  When I have tried to explain this to my doc I get, "you are doing great."  Really, because my life is falling apart.  I am lead to believe that as far as brain surgery goes this is a minor one and should not be effecting me in such ways. 
I guess I am looking for a connection.  Because everyone around me thinks I should be able to live like i did pre surgery....and I can't.

[CHD63]

Dear Corilyn,

Saying welcome to this forum seems so inadequate to say to you right now, but I do mean it sincerely.  You have come to a wonderful forum, where so many of us can identify with at least parts of what you have gone through in the past year.

It sounds as though you were blind-sided at several points in your recovery struggle and that is just not fair.

My first comment is to get back to a doctor you trust ..... hopefully your primary care doc can understand.  If not, find a new, sympathetic doctor who will truly listen to you and care.  You may need some temporary medical intervention to get over these feelings.

This is the very thing Dr. Rick Friedman at USC and other docs were talking about at the last ANA Symposium in Los Angeles.  We need better after-care for post AN treatment patients.  We cannot just fix them up and send them home with the after-issues some patients experience with no assistance available.

I was not as young as you are when I was first diagnosed and treated, but nonetheless it was a life-changing event.  One of the things that helped me the most was finding a chair yoga class (all activities are done either sitting or being able to touch the chair or a wall).  In addition to helping my balance, I learned to meditate and mentally go to another place when things were not going well.  At the same time, I found great comfort in the support of my church friends and many people I knew were praying for me.

Each of us walks a different path, but you have had more than your share of post-op issues.  I hope you can find someone near you who can help you sort out which issue to work on first.  It is overwhelming to try to focus on all of them at once and wish they would all go away.

Many, many thoughts and prayers.

Clarice

[Mimispree]

Dear Corilyn:

I can identify with your frustration and fear of defeat.  It's only been four months since my very similar surgery.  You have the added challenge of having small children, and I can't imagine how much more difficult recovery would be as a parent to young children. 

I am new to this forum as well, but by reading posts like yours I understand that we're all in this together and we can help bolster one another when needed.  I have often said (or thought even more) that I'm failing at life, but the truth is that we are not failing.  We have been thrust into a new life that is completely foreign and our old coping skills are no longer relevant:  Our previous strengths may no longer be assets and our weaknesses may be emphasized because of our new limitations.  I hate that my life had to change so quickly and profoundly, but I still have hope that I'll learn new coping skills and gain a new perspective on life. 

I guess we just have to keep on keepin' on.  I guess it's just going to take time to adapt to a new life.  Like you, my work life is in an upheaval:  I don't think I'll ever be able to re-open my small business and I don't know what I'll do to make a living.  I have a feeling my work-life will not be as important as it was before the surgery.  I guess there is an element of identity crisis that happens after this surgery.  I'm sure your kids help you with this by letting you know you're still their loving Mommy, and that's the most important thing, right?

I wish us both good health as we keep moving forward not failing, but struggling a bit.

Be well,
Michelle

[Corilyn]

I just kept dealing what was dealt, silently for the most part, because I could suck anything up to get to the finish line.  It is just how I operate.  However, the finish line that I was expecting has never come and I am tired.  I am scared about what I am to do in the future.  How to support my family.  All I want to do is spend my time being a mother and a wife and helping those around me.  That is what makes me happy, but it unfortunately does not pay the bills.  I am angry that the doctors were and continue to be very nonchalant about this surgery.  I was not prepared.  It is encouraging that this was a topic of conversation at the symposium, and I actually am going to write a letter to this doctor that was mentioned. 
I am going to set up an appointment with my PCP and ask for some direction and guidance at this point.  I have also asked my husband to join me in that appointment.  Because as soon as someone suggests to me that I should be ok or better than I am then I minimize my situation in order to not appear weak.  He will help keep me authentic I guess.  And he will also hear my options.  He believes that therapy will make it so I can be ok and work to the capacity that I used to and still be able to function at home and not become so fatigued and riddled with pain.  This is all so crazy.  No one said it would be like this.  I wish I had signed up on here a year ago!!

[Kathleen_Mc]

Corilyn: I think for someone to believe you could just live the way you were pre-op is inappropriate, you aren't the same so how can you just go on as if you are?
You need time to adjust to the "new you", time to adjust to your limitations and make the best of them, time for the other nerves to find a way to make up for the lost ones etc.  I don't think anyone can tell you how to accomplish though, it is something someone has to find for themselves.
I am sure you are sick of hearing "give it time" but that is true, it takes time. My surgeon explained to me my tumor didn't grow over night and I will not recover overnight, it took years to get to the size it was and recovery will be slow (though hopefully not that slow).
Fatigue is a big issue that must be "taken care of", when you're too tired all things will get worse.....balance, concentration and that will diminish your hearing, fatigue will make the facial issue worse etc. I found I needed naps for a long time, heck I still do and my original surgery was in 1990! I know having a family makes this difficult.....try to find a way to grab a quick nap at some point during your day!
Kathleen

[toddchaney]

I can understand your frustration but you should not lose hope. Why don't you try rehabilitation services offered by medical centers .

[ewhitese]

Hi Corilyn,

Depression is our enemy and a large part of our physical symptoms.  It amplifies our awareness of the aches and pains, and makes us concentrate on what we have lost losing sight of what we still have.  I didn't realize I was depressed until I started journaling on a daily basis and looked back at what I had written.  Changing my focus made a world of difference in my road to recovery, my symptoms didn't change but how I dealt with them did.   Four months to one year were pretty rough and I got through them by thinking positive, taking one step at a time working on an individual symptom and striving to make it better with out looking at the whole picture for too long.

I still keep a pair of cranky pants in the closet and put them on every now and then, for no apparent reason I just get cranky and take it out on those around me.  I remind myself that my two year old grandson has a pair of cranky pant he puts on everyday when he is tired or hungry and I should be able to rise above it.  If I can't and I am aware I am making everybody miserable around me I excuse myself and go to a quiet place and read or watch television, I reread a lot of stuff and watch movies repeating the same ones over.  It seems to take my mind off of what ever is stressing me out and mostly puts me to sleep for a period and I can wake a little refreshed and move on.

Fatigue is an under described symptom of post surgery side effects.  I would just fall off after a few hours of activity everyday.  I couldn't drag myself out of bed.  Not so much sleepy just exhausted and needing to sit down and vegetate for no apparent reason.  fatigue I have seen described post surgery for other things as well and spoken of as a result of anesthesia.  I really didn't start to regain my "ambition" until 14 months post op.  I willed myself to keep going trying to keep up as best I could.  When I felt I couldn't go anymore I just excused myself from what ever was going on and went to bed.  Now it is not as big an issue on my part because I simplified my life and I am getting my strength back.

As we are going through it, it feels like it is a permanent part of our lives we will deal with for ever, but I am finding it gets better.  Maybe it is me getting used to things the way they are or the time factor has tainted my memory of the way things used to be a combination of both I guess.  Our recovery requires us to exercise the things that aren't working and that is uncomfortable.  But as with all physical training the exercise eventually takes effect and we operate at heightened level of performance.  No pain no gain.  eg learning to walk all over again is lousy from the stand point of ( I should be able to do this no problem ) but from an exercise point of view we should look at the smaller strides such as last month I couldn't get to the mailbox for the mail today I can walk the block.   

My permanent hearing loss is a constant that is annoying as all get out, I am preparing myself for attending a relatives wedding and reception this evening.  My cranky pants point of view says you won't be able to hear anything because the crowd volume eliminates all voice recognition so I will be nodding my head at stuff I have no idea about.   The motion in the hall of bodies moving around me will bring out the vertigo so I need to take my motion sick pills with me.  II will be away from home for way to long, driving home tired and I will be a wreck for the rest of the weekend.

But I know it isn't about me and I need to be a face in the crowed to show this new couple the support for their new union.  All the relatives who know what has happened to me want to know I still exist  so they can stop worrying about me.  Or maybe I am not even one of their concerns.  I'm going to go, put on my happy face, force myself to pay attention to everything I can and get involved in conversation and (exercise my social skills).  I need the practice.  And when I physically can't keep up I'll quietly pack up and head home.  But secretly I still want to say no thanks go on with out me.

Give yourself the benefit of time, at least don't be angry at yourself for your physical condition, there is only so much you can do to rehab. the rest is plain and simple time.  If you have hip replacement surgery, no one would suggest getting back out on the snowboard right away.  We appear as though we should be able to get up and go but we actually have to catch back up.  It will come, We will most likely not ever be where we were, but who is.

Grant yourself the opportunity to take this time to work for yourself and care about yourself for a change.  You will rejoin your life in a few months, and all this suffering will be something you look back on.  You will not be able to rush the recovery process, when your body is ready it will tell you.  You are not a slacker because you can't keep up, you will get back into life as your body lets you.  That doesn't mean take your shoes off and veg out on the couch forever just when you need it.  And it doesn't mean drop out of everything, just some things.  Take back your life in small doses at first.  You are still in the heart of your symptomatic phase and so work on them slowly at first,  no one runs a practice 4k marathon everyday to get ready for a 4k competition, build up to it.

We have all been in your shoes, and I know my words don't make it any easier or make you less frustrated.  At the time I was where you are I felt the same as you, isolated and alone in my suffering.  But I know it will get better for you, look for the small improvements they are encouragement to be patient and wait for the big ones.  Keep up the good fight it will get better I promise.  Hope my words are helpful.

Ed

[MNTim]

Corilyn,
I can't say it any better than previous posts so I will just say there is a community of us who get what you are going through. Acoustic Neuromas are a chronic condition and people around us don't get it but if you tell them enough they will start to come around.

Tim