Almost 2 years on... will I ever feel 'normal' again?

[han nah]

Hi All

It's been a while since I logged on last, and I'm plodding along, taking each day at a time. My face is coming along great, the nerve grafts are amazing. I now atleast have some movement on my rightside, all controlled by movement of my tounge. I have another 4 months of the 2 years for my graphs to keep growning - then they will stop and I will be left with the results I have, which Im heaps happy with .

However, like I said, Im taking life each day at a time. I still am extremley dizzy about 80% of the time, have EXTREME constant tinnitus in my deaf ear which I feel over time is getting progressivly worse and always very tired. I don't like complaining but I must be having a bit of a 'down' day today.

I guess I feel like it is almost 2 years on and I should be getting 'better'. I am not yet back to work full time, I could not even consider working 5 days a week again. I now work 4 days with a day off in between, and even working 2 days straight I feel absolutely exhausted and feel that I need a day to recover. When I have to concentrate, I have real trouble and feel that after 5 minutes my brain is exhausted and the tinnitus gets worse. Even driving the car drains my brain and sets of my dizzyness. I feel the only way I can relax and tune my brain out is when Im laying down on my side with my eyes closed - that stops my brain from 'being turned on'. My surgeon said it can take up 5 years to even start to feel 'normal' again. My main concern to me is that I want to start a family shortly and I worry about how I can manage a baby and a part time job, when I can't even manage to work 'full time' yet. I feel llike some days I could sleep or lay down all day.

I was just wondering if anyone has the same issues afew years post their operation? Will it get any better soon, or is this something that comes with having the AN and we just have to learn to deal with it? (My surgeon told me my tumour was bad, I had a 13 hour operation when it was only supposted to take 4 hours - so am I just an 'unlucky' one).


Thanks for your support
Hannah

[jazzfunkanne]

hi hannah, i am two years post op, and would not consider working anything less than part-time i know i couldnt cope with it, my kids are young and they come first there is no way i could do it all, i often wonder how i coped before, i would like to work again but the hours and days would have to suit, even three mornings a week (is there such a job lol), its interesting your consultant says it can take 5 years gives me hope. About your facial nerve graph i have read it can take about 3.5 years for the graphs to grow maybe am wrong. Take it easy we can only do so muchxxxx

[Jim Scott]

Hi, Hannah:

I'm sorry to learn of your slow recovery.  Your issues are not uncommon and although you seem to be healing slowly, you do have some progress, which is encouraging. 

As you know, every AN patient is somewhat different.  For AN recovery, 'normal' is a relative term.  There simply isn't a 'pattern' we can use to gauge whether we're healing 'normally'.  As you surmised, some AN surgical patients do have long-term, intractable issues to deal with.  Others heal - but very slowly, usually with much therapy and hard work as well as further surgeries, as you've had, and some heal rapidly and don't have many issues to deal with.  We're a very diverse group, in that regard.  I wouldn't consider you 'unlucky'.  I would consider you a slow healer.    Meanwhile, never, ever assume that how you are today (related to your AN recovery) is how you'll be tomorrow.  There is always hope.  If some things never recover perfectly, so be it.  You'll deal with that when it becomes necessary.  For now, be of good cheer.  You've had good results and progress with your facial nerve graphs and in time, you'll likely regain the energy you now lack.  I'm sure you'll be a fine mom some day, too. 

Jim

[golden]

Hi Hannah,

I read your post and I am glad I am not alone in recovery. 21 months post surgery. I still have conditions that I developed post surgery. I am a single mom of 2 young children and went back to work 4 months after surgery due to financial reasons. I worked for a little over a year and could no longer do it.  It came down to my house, kids or working, one had to go. My children are my life and if I wanted to try and live some type of normal life and care for my children I was going to have stop working. I choose to take a short term medical leave and apply for S.S. I knew that I had to listen to my body and quit acting as if nothing was wrong when in reality there was plenty wrong.
I thought that after the removal of the 3.7 cm AN all would be better and life would go on as it did pre surgery. After a year being post I thought it surely would return to normal. I am now going on year 2 and I still have headaches, SSD, tinnitus, balance issues, confussion, facial paralysis, vision problems, fatgue, sleeplessness. I pray I find normal. Like you I am beginning to think that there is no such thing. I am glad I read your post. I don't feel so crazy. Good luck in your recovery and I wish you the best.

Golden

[han nah]

Thanks everyone for your words, just knowing that there are other people out there helps. I think that I have decided that taking each day at a time is the only way it can be. I would really like to apply for another job, but even just the thought of having to learn and all those 'brain cells' required for a new job just is wayyyyy too much for me at the moment, and my focus will be my baby when we start a family (shortly hopefully ) I'm sure that I will be able to cope, with a supporting husband and my parents and partents in law just living about 2  and 2 and half minutes up the road minutes up the road. I'm sure that that internal 'mother' instinct will kick in, and Ill just cope - somehow.Thanks heaps for your advice and time, like I said it really helps.

Hannah

[CROOKEDSMILE]

Hi Hannah,
I too am dealing with facial paralysis. I am a mother of 2 little boys and am pregnant again. I must tell you that getting pregnant again was the best thing that could happen to me. I have been so consumed with my post op complications that they overwhelmed me most days. I could not muster the strength or courage to get out of bed some days. Although I still have the complications....I can now direct my attention to this unborn child. For some reason.....the miracle of this little one and of course the two sweet little boys that I already have give me hope, courage and strength beyond your imagination. I see such Life and Happiness in them and it is contagious I must say. So be at peace knowing that when you do decide to get pregnant.......your life will change.....for the better. My kids and this pregnancy have been a life saver for me. Although I am a bit more tired being pregnant.....I am so excited that I just push right through it. I might add that 1 year after surgery I tried to climb Pinnacle mountain(alone)... here in Arkansas. It is not rock climbing but a straight up path to a very tall mountain. I walked about 10 minutes of a 1 hour long journey and turned back.....exhausted. I am now 19 months post surgery and 7 weeks pregnant.........my husband and 2 boys went to the mountain last Saturday. The kids wanted soooo bad to get to the top. I was NOT going to give up. I was going to make certain that my boys got to the top of that mountain come hell or high water and I would climb on all fours if need be. It wasn't an easy task...I used a walking stick and my 6 year old held my hand to steady me when needed. I took long breaks and a 1 hour walk turned into a 2 hour one but by God....we made it. I was very tired for the remainder of the day but so proud of myself. It was a huge victory. I tell you this so that you will know that all things are possible through God and through the love of your children and family. My kids are my biggest motivators. When you become pregnant you will instantly know what I am talking about. You won't worry so much about that dry eye or that wonky smile.....you'll be too consumed with the health of your unborn babe. It is a great diversion.
Much love to you. God is my healer but RIvers and Tanner have also healed my broken spirit. Your baby will do the same for you. Children truly are a gift from God.
Angie

[Kaybo]

Hannah~
I agree with Angie...your kids & family will be the BEST thing to pull you thru this.  I was like you -25, married, but with no kids when I had my AN surgery.  It was 14 hours and I had a stroke on the table...I really wasn't in very good shape.  I did go back to work after 3 months because I really didn't have another choice.  I got pregnant a year after (a little TOO soon probably for my body) and just like Angie said, your whole focus changes from YOU to that little life growing inside you.  I taught school and I was EXHAUSTED...some days those first few months I would teach all day and come home and go to bed until the next morning!!     It was DEFINITELY all worth it - I wouldn't change a thing now!  Check out my blog if you want (address below) and see what life is like for me 13 years later.  I would suggest setting little goals for yourself everyday to help build yourself up - BABY STEPS!!  Feel free to PM me if you want to chat or have any questions!

Good Luck!
K

[klangel]

hi hannah, i just read your post and it made me cry. i am nearly 5 years out of surgery now that was supposed to have been 6 to 7 hours but wound up being 18+. dont have any facial paralysis thats noticeable to others but everything else that could go wrong did and all the bad stuff just keeps getting worse and worse im sad to say. normal is definitely a relative term. have been scouring the world for some kind of doc to help me. i no longer can work, drive or function as what i believe to be normal and evrey doc i visit tells me the same thing "once all your cranial nerves are damaged there is nothing that can be done to fix them" i really miss the old me. i feel hopeless much of the time and the noises in my head that i can never escape from make me feel as though i am losing my mind. i feel really bad for my family who have to put up with the mean and impatient dependent person i have become. at this point i have chosen to seek alternative healthcare to alleviate as much nastiness as i can and the rest i just have to deal with as i now know that i will be this way forever. the constant change is really the most frustrating part. if all the bad effects would just remain static i would be able to get used to it all, but i am not giving up. i will continue to seek new "strategies" as i call them to deal. i was also just unlucky in my outcome. so many issues. on the better side i also realize that things could always be worse too and that i have to accept the "new" normal. it is very hard to do but i will not give up! i try to concentrate on the good days rather than the bad ones. i will pray that you will continue to recover normalcy in your head and that your spirit will be strong enough to embrace the new normal in the event that it doesnt get better. many hugs to you.   love, kerri

[MamaGina]

I am 8 years post-op, and have not healed fully. I found comfort from reading these posts.  It truly helps to see other people in your boat.  It's difficult, because I want so much to be "normal."  I have recently decided to stop pretending, and apply for SSD.  It was impossible to come home even after working part time and take care of four children, home, four pets and husband.  You said your family and husband is supportive, so having children is possible for you.  You'll need support.  My husband works a lot, but my mom often came over to help with housework (until my dad was diagnosed with Alcoholic Cirrhosis).  I have a baby on the way, and I'm so exhausted, dizzy, confused, etc.  I'm on the fourth day of a migraine.  I am definitely having a bad day.  I really wanted to thank everyone on this post and encourage you to have your family; just don't have high standards about housecleaning!! 

[roncrawford]

I'm 3 years out and I have the same feelings most of you have.  What makes it so difficult is that from the outside you look just fine but things just aren't good from with in.  I'm a strong man and have been through several other semi-major health issues and they didn't stop me like this has.  Family, freinds and doctors all look at me like I'm a loser and they just have no clue what changes this little tumor brings to your life.  The cognitive issues get worse and I feel it's due to the Tinnitus.  To have a stimulas like the noise level of extreme tinnitus is like torture which we don't let terrorist go through.  I use to eat stress for dinner and get stronger from it.  Now I can't handle the simple problems with out shaking like a leaf.  What a burden!

[yardtick]

Well I guess I'm a loser also.  I'm two yrs and almost 6 months out and I haven't worked in almost a year.  This is to the point, I DO NOT give a rat's A$$ as to what people think about me any more.  They are not walking in my shoes and dealing with my problems so, this is for all of them!! 

Shocking eh gang, I use to be so mildly mannered

Anne Marie

[Kaybo]

YOU ARE NOT A LOSER, Anne Marie!  None of us are!  You just got to do what you can & go on with life..."suck it up & go" is what I always say!!

K   

[nancyann]

Hello everyone:   I agree with K, none of us are losers;   whether we had surgery or radiation,  we have/are dealing with difficult issues.  You may think having paralysis is the worst thing,  but for me,  having to endure horrible headaches would be worse - we're talking constant/frequent pain.   I feel lucky I don't have pain,  lucky I have feeling in my AN eye that let's me know I need more lubricant.   
I was able to return to work because I am lucky enough to have a wonderful, caring, supportive group of co-workers who still, after 2 1/2 years, ask if I need help, etc.
I also don't have children - I don't know if I could have gone back to work if I had the added stress/energy - zapping of raising them.
I believe we are all strong & we are all doing the best we can with our individual AN issues.
I'd jump off my soap box, but I think I'd land on my butt !!  (a Pooterism).

Always good thoughts for bright futures,   Nancy

[Kaybo]

I was thinking about the whole headache issue when I wrote what I did - I absolutely think that living a constant pain would be much worse than having a paralyzed face.  I don't have feeling in my eye, or anywhere on that side of my face, but I count that as a GOOD THING too.  I guess it is just all how you look at things and whether or not you TRY TO FIND THE GOOD - no matter what it is.  With all the scratched corneas and surgeries over there, I have saved on a LOT of PAIN!!     I also have been very blessed with supportive co-workers, family and friends!

K

[cin605]

Nancyanne..i can hold your hand & we wil jump off the soap box on count of #3..O.k....