ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: MMH747 on August 01, 2009, 09:27:55 am
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I had translabyrinthine surgery for an acoustic neuroma that was 2.7 cm x 1.7 cm on 5-20-09. As my hearing and balance had been quite diminished prior to surgery, I have adjusted to the total loss of hearing and balance issues well after the surgery. However, my facial nerve is unresponsive leading to challenges in eating, chewing, talking, and, of course, the dry eye. I found this forum really helpful in finding suitable eye drops and other hints. Also, I am encouraged that there may be hope for the facial nerve to regain some function as it is only 2 months post surgery for me. I still am fatigued and lack the energy or ambition to do a great deal. I do try to walk @ 1 1/2 miles a day and do plan to go back to work (part-time) in another week. I talked with a nurse at my surgeon's office regarding my concerns about the fatigue I'm experiencing. She stated that this is not normal, and that except for the facial nerve issues, I should be fine. Is fatigue and having emotional ups and downs part of the healing process with acoustic neuroma? I'm trying to get out more, but I get despondent when I cannot smile or have difficulty with eating or even talking. Friends and relatives are very supportive and think I am getting on well. But now when I hear this nurse telling me I should not be having this fatigue any more, I'm frustrated and distressed.
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You are doing fine! Someone who has never had this surgery has no clue about how it feels. Everyone varies in how it goes for them afterwards. Yes it maddening to think one should be all ok at 2 months and why am I not yet. Plus having the other issues with the face makes it even harder. We didn't know how hard this can be for a time afterwards and sometimes it takes longer to get better than we ever thought it could be!
I am a now retired nurse but had no knowledge about ANs till I have had them too. Be good to your self now!
I wish you well, Cheryl R
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I, for one, have not regained my pre-op vim and vigor. You are able to walk a mile and a half, so I'm not terribly worried about you.
But please be reassured that fatigue and lack of motivation and a sense of being overwhelmed by all that I need to get done have continued to be a problem for me. Just do the best you can, eat a healthy diet, surround yourself with positive people and things that make you happy, continue to get exercise, watch good movies, read a good book, and keep practicing your smile.
I thought I was all better at eating until local corn came into harvest last week. Now I'm biting my lip again. But it's worth it. Yummmm!
Also, whenever I swim underwater my eye gets irritated, so it must not be closing and sealing.
Good luck.
Hang in there,
Nancy
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I talked with a nurse at my surgeon's office regarding my concerns about the fatigue I'm experiencing. She stated that this is not normal, and that except for the facial nerve issues, I should be fine. Is fatigue and having emotional ups and downs part of the healing process with acoustic neuroma?
I think just about all of us on this forum would give you a resounding "YES!!" Fatigue and emotional ups-and-downs seem to be very much a part of the recovery process (and I would venture to add that this is true for almost all types of major surgery). It sounds as though you're coming along fine -- please don't be too hard on yourself, and definitely rest and take naps when you feel the need -- and I hope you've read enough postings on this forum to be quite optimistic about your facial nerve situation. I don't want to criticize the nurse in your surgeon's office ... but her response strikes me as rather odd.
You'll be fine -- just don't rush things!!
Catherine (JerseyGirl 2)
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MMH ~
I'm afraid your surgeon's nurse doesn't know what she's talking about. Your daily 1½ mile walks and intention to return to work next week (albeit, part-time, which is prudent) are clear evidence that your recovery is proceeding at a normal pace. My neurosurgeon told me, quite forcefully, that post-op recovery was measured in months, not weeks. Although I had a complication-free surgery and recovered rapidly, I never regained quite the same level of energy and stamina that I had prior to the surgery. I attribute some of that to my age (66) but I'm physically fit with no medical issues to deal with so I have to believe that the 9-hour AN removal surgery had a long-term consequence. I'm still grateful for a successful surgery (and subsequent irradiation) and that I came through as well as I did. My doctor was ecstatic about my good surgical/radiation results and fairly quick recovery. So was I. :)
The emotional roller coaster you're experiencing is quite familiar to almost all post-op AN patients. Even in light of my successful surgery and good recovery, immediately post-op I had a few weeks of weird emotional responses and some slightly embarrassing behavior (grouchy beyond belief) that I later had to apologize for (to my ever-patient wife). So, I believe you're normal - and if you have any lingering doubts, by all means consult your surgeon, not his nurse, who may be a fine nurse and a wonderful human being but simply doesn't understand the long-term ramifications of this serious surgery (AN removal). One hopes your neurosurgeon does and can assure you that your recovery is proceeding normally.
I suggest that you try to look toward the future and know that whatever you're dealing with now will very likely improve in a few weeks or months...but it will get better and that you won't always be this way.
Jim
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MMH .....
Just want to chime in that fatigue and the emotional roller coaster are certainly considered "normal" following AN surgery! Glad you found us on this Forum so you will know that you are not alone. The walking is good as it really does help with the recovery process, but remember to rest adequately in between times.
Unless someone has had brain surgery, they really cannot fully understand that it is quite different from having other types of surgery. With AN removal, you are dealing with many system-wide issues ..... all of which take tremendous energy, thus the constant fatigue.
Thoughts and prayers.
Clarice
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MMH:
I, too, disagree with the nurse's opinion about fatigue. I'm just over a year post-op, and it wasn't until recently that I began to regain my energy. I thought that I would suffer from fatigue forever. I still do have setbacks, which hit me when I overdo it with physical activity. It takes me days to recover from the fatigue, but I do recover.
As for your facial nerve...I've learned on this forum that the facial nerve is more resilient than the hearing nerve. Give it time.
I was on medical leave for 2 months. When it was time to go back to work, I didn't think I was ready, but I went back as originally scheduled. It turns out that getting back into that routine helped me with my ambition to do more. It wasn't easy, but for me it was btter than sitting at home and wondering when I would feel better. Going back to work helped me get better.
Forget about what the nurse told and be patient. It does get better.
Syl
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Welcome!!!
WOW!!! That nurse has no idea what she is talking about! I suffered fatigue, and I know others have so don't be hard on yourself. Listen to your body and be extra kind to yourself. I have experienced some depressing times after surgery. I did not expect facial paraylsis and was devasted. I went on anti- depressants, and went back to work as a kindergarten teacher (droopy and deaf).
After the dust settled and I had a chance to access the situation (when I found out about the tumour I went into fighter mode and didn't have much of a chance to take it all in) it was sometimes hard to take in. I had a brain tumour-shocking!
I understand and we are here to support you!
Michelle ;D
When was your surgery?
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Fatigue is VERY normal - and it can last for a long, long time; many, many months post op.
Depression is also a very common post op side-effect as is frustration.
Don't get discouraged, lots of us were in the same boat as you are in now.
Stick around the forum - it helps! We're here for you.
Best,
Jan
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Thanks to all who responded. I needed some validation that what I was feeling was indeed normal. Your support and encouragement, along with the Forum and the info at this web site have been so comforting. Even though I can't smile physically, I wish you all smiles! Thank You! :)
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mmh747 i agree with the group.fatigue and emotional roller coaster ride.i completely loss my r/side hearing but not until two weeks after surgery.i also temoprarily lost my r side facial control.but the were able to bring it back with another course of decadron.i only had it for a few weeks so i can sympathize with you.it's certainly a set of struggles for all the reasons you spoke about.give yourself and body the time it needs.go at a pace that's comfortable for you.i know it's hard.it's not even easy to tell you that.because it's an isuue i also struggle with.best of luck with your recovery i pray it's a short and successful one ernie h.
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MMH747,
I had my trans lab surgery in Feb of 2007 and still suffer from chronic fatigue. Your only several months out and my find as time goes by your stamina improves. Recovery is very individual for us.
Dan
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I agree with the group... nurse has no idea.
You sound normal for post AN surgery to me too. I am pretty well 90% back to who I was pre-surgery 2 years ago. However when I get a cold that affects the ears nose and throat- I regress- as does my energy and balance. But then I heal and move forward. High altitude has me a little weird too- so I will just stick to the ocean beach ;)
Between months 3 - 6 I was still needing afternoon naps and could not possibly imagine to have been working full time then... it was enough to the do the domestic tasks at home for a family ...and that was with help. If you are not up to returning full force to work- you should discuss this with the physician (skip the nurse!)
You are doing the right thing by walking every day.
This was not a knee surgery- but a "brain surgery". Neurological healing takes longer than muscle healing. Nevertheless healing does happen. Now your brain is having to retrain and adapt to balancing all day with just one vestibular nerve now.
Hang in there- it will come eventually. In the meantime know that it is always OK to post with us- we have been there and certainly can offer more empathy, understanding and first hand experience than "the nurse" you mentioned.
Keep moving forward.
DHM :)
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Thanks to all for the insight and encouragement. I went back to work this past week and though it was only 3 days and 13 hours total, at a desk job, I was exhausted. Each day I came home and cried, almost unable to do anything else. Long naps and just resting at home helped, but I feel so useless. It is hard to describe this feeling of fatigue to others - not really tired, but just unable to do much. This week I've also experienced that terrible metallic taste in my mouth along with tightness in my head. I was encouraged to read one reply that stated the metallic taste seemed to come about the same time the nerve was starting to come back, so I am hopeful. I'm hoping this next week will go better, and perhaps getting back into a routine will help.
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Be patient with yourself! Fatigue is very normal, especially with any kind of brain surgery. When you add in things like hearing loss and facial nerve damage, it is no surprise that the brain finds it necessary to call a "cease fire" on activities. I was still napping for several months post surgery. And, even now, nearly 1 1/2 years post, if I really overdo things, I will be extremely tired. Don't get discouraged by the first few days back at work - it just takes time.
Sending you healing, restful thoughts from NJ...
Debbi
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The fatigue is totally part of the "new normal" I am almost 5 yrs post op and still suffer from it. I have given it my own definition and call it "sensory fatigue" With having to constantly monitor your every move, every step due to the vertigo/balance, and the constant screaming tinnitus, headaches, occassional pressure cooker brainwrecks with barometric pressure changes, trying to hear people in noisy places, and the list goes on and on. By the end of the day, your brain is just plain tired from sensory overload.
I am about to embark on surgery #2 and dread the initial fatigue one goes through after surgery. At least this time I know what to expect.
I have one thing to say about the nurse.......... ask her how HER fatigue was after HER brain surgery,,,,,,if she can't answer tell her not to make judgement (and dismiss) on something she has not expereinced. AND THAT GOES FOR THE DOCS TOO!!!!!
at about 18 mo post op I went in to my doc complianing about the fatigue and the cognitive issues I was dealing with just to be told , and I quote " well we didn't cut into your brain so this type of surgery would not cause any cognitive problems"
OH REALLY????????????? how about elevating my brain and holding it squished to one side for 8+ hours, ya think that could cause any problems....... ya think??? I really get tired of the matter of fact, compassionless way about some of the medical folks.
these docs, I tell ya, just a different breed of folks. But God Bless them, we wouldn't be here without them
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I am about to embark on surgery #2 and dread the initial fatigue one goes through after surgery. At least this time I know what to expect.
#2? Wow! BIG HUGE HUGs!
We are here for you on the forum.
DHM
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MMH,
The fatigue thing is normal. For me 3 years post surgery- I need that nap and I factor in a nap every day. If I don't get one, I feel it the next day.
Come to think of it, I've always liked my naps.
The emotional fatigue is probably what gets me with SSD, tinnitus, facial paralysis.
You are doing great BTW!!!!!
There will continue to be good days and bad days, and just see how it goes as time goes on.
If I've had a busy day, I come home and am
BLAH
The only word I can use to describe it.
ZOMBIE comes to mind to! Ah well, I am what I am, is what I say.......
Keep up the great recovery.
Maureen
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i agree with all that patty has stated.i've heard it all myself.if it were one of their own family they may see things differently. ernie h.
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I'm like Maureen, three years out and I still need naps. I think I have developed an allergy to any sort of strenuous activity, it knocks me on my back for several hours :P
Anne Marie
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We tried to address fatigue problems :) in some ANA/NJ newsletter articles: issues for Jan 2005, June 2004, Sept 2008. These can be viewed at www.ananj.org.
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So I have decided that I am fatigued beyond the fatigue I live with daily post surgery, even 5 yrs out. Thinking about going in to have this surgery done a second time is wearing me out. I wante to wait till Jan, but don't think I can do it. Thinking if I have to do it, maybe I should just get it over with and get started on that road to rcovery which was for me, very long and really didn't have an end.
Just feeling very tired and venting a bit I guess.
patti ut
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I know this is WAY past the time this was posted, but I just now am not too tired to post!! ;)
I still struggle with fatigue, but don't usually have time for naps. However, at night when I am done - I AM DONE and I can't find the bed fast enough!! I also use the weekends to recharge - I still am VERY active but if I can sleep in a little later or get a Sunday nap, then my whole week goes better. I am over 13 years out, but as the doctors told me (several different - even family friends that didn't have anything to do with the surgery), I will ALWAYS be more tired than most at the end of the day. Even if your body compensates for your balance, it is still a daily compensation and requires double the energy because that one nerve is doing double the work. Factor in that I had a stroke and it is no wonder that I get really tired. I really haven't let that stop me though, I just try to balance my time better...I went back to work after 3 months - teaching 1st graders - NOT a desk job! - so I didn't have the luxury of naps. Also, the doctor wouldn't put me in therapy until then so I would teach ALL day and then go downtown for PT - needless to say, I would go home & sleep until it was time to get up & do it all again the next day!! Dave & I can vividly remember our 2nd Anniversary (which most peopel really can't) because I was in bed asleep and he ate take-out Chinese food and watched TV - WHOO! good times! ;D
K
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Aloha:
Finally...someone has mentioned "metallic taste" or loss of taste altogether. I explained this to my doctors here in Hawaii and they had no idea what was going on. This sucks big time. Just viewing all the responses in this web site has helped me immensely! Trying to explain all of this to a "normal" person is just about impossible.
Thanks again for the continuing help. This is my first day on the site and it has already made a difference.
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"Metallic" taste, or loss of taste, or a burnt feeling in the tongue are not very common with ANs, but it does happen and lots of us have experienced it. This was actually my presenting symptom and when I went to my family doctor he had no idea what I was talking about of course. I found out afterwards that it is all associated to the lower branch (mandibular(?)- if I remember well) of the trigeminal nerve (cranial nerve V). Once the AN starts to press on the trigeminal nerve on its route entry to the brainstem, symptoms such as altered taste, numbness in the face and dry eye may appear. They are all due to reduced sensation, because the trigeminal nerve is a sensorial nerve. I hope that I am not being too technical, and that this makes sense. Next time you talk about it to your doctors, you can explain it to them and they will hopefully get it finally.
Marianna