Post-Treatment > Cognitive/Emotional Issues

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

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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

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