8 week post-op tomorrow and a wee bit nervous .....

[Denisex2boys]

I feel like I have surpassed my own expectations by leaps and bounds - but seem to have hit a 'wall' - I really have not noticed any improvement these last couple of weeks and that is disheartening - - still numbness and metalic tasting on inside of mouth, the tip of my tongue still feels 'burnt' my head is still numb, still seem to wobble around like a drunken sailor when on long walks and my eye is no better - - it looks a bit wider - but still no tears and no full closure ....... AND ....

I have my 8 week post-op tomorrow with the ENT, Neurosurgeon and Audiology - - I am hoping to get the go ahead to maybe start easing back into work .... maybe slowly, I am really HOPING that my hearing is at a level that I may be able to get an aid of some sort - but fear it's not ..... and I am REALLY hoping that they are impressed with me as I am in myself that I have come this far after a 12 hour brain surgery!

Oh ... one REALLY good thing though - - my tinitus seems to have settled down a bit and my headaches (still there) but controllable now

[Debbi]

Denise-

Hang in there - ups and downs are part of the recovery process.  Recovery does't happen at a steady trajectory, but rather in fits and starts - all of which make it more "challenging" for the patient.  I will also say, from first-hand experience, that it is sometimes hard to notice our own small steps of progress.  You live in your body 24-7 and the changes that occur do so slowly, so sometimes you may not even notice.  One of the smartest things I did was take pictures of my face every few weeks.  Even now, I tend to look at my face and see all the parts of it that don't move, or look "different" than the old me, but then I look at the chronology of pictures and I see how much progress I've actually made. 

Don't get discouraged - and if you have some down days, know that we ALL understand because we've all been there!

Debbi, sending you a hug

[leapyrtwins]

Denise -

like Debbi said, hang in there.

Ups and downs are very common post op and some side-effects just seem to take forever to go away.  I thought I'd never lose the metallic mouth  but eventually I did.

I'm sure you and your docs will know better than I do whether or not you are ready to return to work, but if and when you are, you might want to consider returning part-time if possible.  That's what I did and in hindsight it was a great idea.  Although I originally thought I was ready to return full-time, I soon found out that I was wrong.  The first few weeks I was back at work, I was very grateful to get home by noon and take a much needed nap.

Don't push yourself too hard.  Everyone heals at their own pace; you'll get there.  Patience is hard, but it's key.

Good luck,

Jan

[Dan]

Denise,

I had that feeling also, the first 2 weeks I thought I saw improvement every day.  Then I had weeks where I thought there was no improvement, but when I looked back a few weeks I noticed that there was more facial movement.  I'm at 15 months PostOP and am still seeing improvement, it is very slow and minimal but its there.  This reminds me of when I did alot of sports, you always see alot of impovement the first few weeks but then it takes weeks to cut a few seconds off your 5km run time.  Weight lose is another good example, when you start a diet you loose the first few pounds quickly but then it may take weeks to loose the next few ounces.  I've heard it hear alot and finally realized what it means, patience, patience patience.  Give it time its coming back slowly.

Dan in Germany

[Jim Scott]

Denise:

I know - from reading so many posts relating to healing and recovery - as well as my own experience, that the healing process is not only somewhat slow but, as has been correctly noted in previous posts, does not occur spontaneously.  A little improvement here, a little there and eventually, the problem is resolved or at least alleviated enough for you to notice. 

I can understand your apprehension about being evaluated.  You see progress and very much want that progress to be validated by a medical professional but are concerned that it is more apparent than real.  I believe that a person knows their own body well enough to know whether they are healing or have 'plateaued' (not getting any better - or worse).  Although, by your own account, you still have some deficits, you do seem to have improved.  I think your doctor will verify this, which should build your confidence.  I can only hope that he allows you to go back to work on a part-time basis, as you desire, and that your hearing has stabilized enough to get an aid.  I think you may be pleasantly surprised at how far you've really come in just 8 weeks.  Let us know. 

Jim

[Syl]

Denise,

Right after my surgery, I noticed improvements in my balance every day. The progress seemed to slow down after a few weeks. But it hasn't stopped. Even after 6 months, I do continue to notice improvements in my balance. With physical therapy, my balance certainly improved, but not the dizziness. That felt like it reached a plateau. But just this past Tuesday night I noticed a considerable improvement. Sometimes I go walking 3 miles at night and that is when my balance and dizziness are most challenged. However last night, I didn't feel like such a drunken sailor. I walked a much straighter line and the dizziness was diminished.

Be patient, you do have to do whatever you can to help improve your side effects, but there will be continued improvement.

Syl

[Denisex2boys]

So the UPDATE ..... My 1st appointment was with audiology - - which I knew from the get go that I failed miserably - - - but we were meeting with the ENT Surgeon later in the afternoon for his post-op exam.

My 2nd appointment of the day was with the Neurosurgeon - - and yes! He said I was doing really, really well! That the incision was healing nicely and that all the residual feelings and effects of the surgery will just take time - not to get frustrated - that I am only 8 weeks out - - he told me that mid-Jan. I can give work a try but part-time for now - to see where the fatigue and other recovery fits in - - he is ordering another MRI to confirm that indeed the tumour is completely gone and I will go back to see him in the spring. Pathology came back and confirmed that the tumour was benign and the cells had not divided ..... and YES!!!!
........ I did ask him ........ I told him I did not want to sound vain ..... but he should understand by the women in his life (heehee) and YES, YES! I can get my hair done again! YIPPEE! I( can get rid of ALL the new grey hair growing in where they shaved my head.

On a sad note though he told me that when they 'went in' I was 'hearing through the tumour' - that the tumour had completely destroyed the hearing and balance nerves - - and these were flattened - -

So the 3rd appointment was with the ENT Surgeon and where I learned that a hearing aid is not even an option as there is no usable level of hearing - - I could possibly get a BAHA (base anchored hearing aid) - but I don't think I could stand a permanent appliance attached to my head (just my preference) - he also mentioned a CROS hearing device - but this I would have to use in my good ear - -

I feel so relieved and lucky already that this was benign - I can accept the SSD - it is just hard to get use to and will take some time ..... all in all it was a relief to get this day behind me ...... and I am looking forward to more 'normal' days ahead! As well as knowing the my recovery seems to be right on track.

Oh yes, .... They both did appreciate the Lindt chocolates I brought for them for a wee Christmas Thank you

[Denisex2boys]

I am just wondering - - -when I do start back to work - PT - it will be at about the 12 week mark - am I expecting too much - or is this the norm for getting back into it again?

[Syl]

Denise,

I was out 9 weeks before returning to work, and I started out part time. I listened to my body and figured that I could handle full-time status the 2nd week back. To be honest, I think that returning to work helped me with my recovery, though I was extrememly exhausted at the end of the day. That's what has worked for me. Remember that everyone is different. Listen to your body and take it one day at a time.

Syl

[Jim Scott]

Denise:

Congratulations on the good news and thanks for the update. 

I think 12 weeks would be sufficient time to recuperate and then start back to work on a part-time basis, but as you know, there really is no template for recovery from AN surgery (or radiation).  You'll know and your doctor will likely verify your ability to work again when the time is right, probably in another month, as he said.

Your situation with the 'flattened' hearing and balance nerves is almost identical to mine.  Like you, Denise, I don't wish to have a BAHA implanted in my skull and I find that, for the most part, I function pretty well with SSD.  However, as you noted, using a hearing device, whatever it might be, is a very personal decision and I know that those who do (Hi, Jan) are very satisfied with them, so this is always an option.

Frankly, I never even thought about the possibility of my AN being malignant...and of course, it wasn't.  Only a tiny percentage ever are, thank God.

Overall, a pretty positive report for someone just 8 weeks post-op.  You should be pleased.  Sort of an early Christmas present.

Jim

[MAlegant]

Hey Denise,
I'm sorry about the hearing but glad that you are doing so very well.  Yes, the ups and downs of recovery are not fun.  Am still working on patience here....I went back to work part-time for two weeks at about 6 weeks and full-time at 8 weeks.  I think I probably should have waited a bit longer but that's just me.   
Be well,
Marci

[cherrypiper]

ok First..................congrats.............

second, your healing process will go up and down if you are like mine. d sometimes slower sometimes faster

my wife and kids and co workers see progress a lot faster then i do.............

deep breathe...................work is just work...................healing is about life

[satman]

sounds as if your doing awesome for a 12 hr surgery. i was out of work for 7 months and in the hospital for 1 1/2 months,had to use a wheelchair graduated to a walker which i had to use for 6 months and couldnt drive for 6 months,
you are doing great !
i could'nt do the baha either,looks to alien for me so i just deal with the ssd. congrats and hang in there, things do get better.