Walking around with an "unconnected" feeling

[MyrnaB]

I had translab surgery on Feb 14, 2005.  I lost my hearing in my right ear, which I never had a loss of hearing before.  It is a relief to roll over and sleep on my good ear when my husband snores.  I now have loud ocean sounds continually in the deaf ear.  Irritating, but managable.  My balance is still off, which I hope will improve over time.  What bothers me the most is the unconnected feeling I have.  When I was in my 20's, this was a wonderful feeling after several drinks.  A friend of mine who had an AN had the same feeling until he had a cranial leak.  He said after the spinal tap, not only did the "unconnected feeling" disappear, but his loud noises in his ear decreased dramatically.  I thought this was very interesting.  I am driving during the day time but still feel "disconnected".  Did any of you feel this way after surgery and how long did it last? 

[bluestar]

I had a 3.2 cm AN removed by surgery in June 2003. I am struggling with balance issues (and have been for many years prior to the diagnosis). I experience that disconnectedness when I get tired and this is also when I have balance issues. I think it not only is related to the surgery but where the tumour was positioned.

I still have this feeling when I get fatigued so I try to do the important things in the morning when I feel best.

Hope this helps. All the best for your recovery.

Bluestar

[Russ]

Hi Myrna 
  The 'depersonalization' as you describe comes with a vestibular insult. Sometimes the "disconnectedness" clears of it's own and sometimes a bit of Valium or Klonopin helps.
   I have it to this day ( nearly 40 years of the feeling ) but have NF-2 and total bi-lateral vestibular loss.
   Best wishes in this!   -Russ

[MyrnaB]

Thank you for your input.  Yes, it is much worse when I am tired.  In fact, three weeks after my surgery, I ended up taking care of my husband and my mother, both in hospital beds at opposite ends of the house.  My mother had a compression fracture in her back and my husband has been down since December with a brown recluse spider bite.  Mom went back to her apartment Monday and my husband returned to work tonight.  I did have help off and on and the church brought meals for two weeks, but I was zapped and am finally starting to relax.  They have had me on antibiotics since surgery for an uncontrolled sinus infection.  I had sinus surgery last week and hoped that this foggy feeling was related to the sinus more than the tumor.  I was surprised to hear that after my friend's spinal tap, this feeling in him disappeared.  Could it have something to do with cranial pressure?  Makes you wonder.  Do either of you drive at night or work?  I can't imagine myself working with this.  It totally messes up my concentration and memory.  Hopefully, with rest, it will subside a bit.   

[bluestar]

I don't know how you have managed to do all of that I certainly could not have done it so soon after surgery.You have done an amazing job. I think it is time now for you to look after yourself. You probably still have some internal swelling from the operation. DO take care of yourself. Remember you are the only you you will ever have. I think, with time the feeling will improve but it may never go completely.

Take time to smell the roses.

Bluestar

[kristin]

hi. i am one month post middle fossa surgery (actually one month was on saturday and i spaced it) i had the unconnected feeling for about a week, but i thought it was medication related. i kept saying that i thought my college days had prepared me for the feeling of being out of the world!

another problem i keep having is my lack to think of the word i want. even if it's a really easy, very common word..i have to really concentrate to think of it..and it's driving me crazy! the doc said it was becuase i had a left sided AN and that is the side for words and numbers and if i had had a right AN i wouldn't have this problem. and that it should go away eventually...

until next time,
kristin

[MyrnaB]

I could definitely use some lessons in relaxation.  I am learning to sit down and let things go a bit.  I have never been one to watch TV so I have started reading more.  And, you are right, we really are the only ones who can truly take care of us.  I have been noticing a small change in memory.   I think time will tell a lot.  I keep hoping so anyway.  Then a wonderful person like Russ comes along and tells me he has had this for 40 years.  Yikes.  Thanks Russ for the mention of what might help if it doesn't change.  I guess if it doesn't change, it will just become a friend of mine.  At least I am alive to complain. :)  Myrna

[bluestar]

I really like the guided imagery CDs by Belleruth Naparstek to help with relaxation. You can find out more from www.healthjourneys.com. I am happy to give you further suggestions for specific CDs if you are interested and I have bought many of them.

Keep working on it and remember now is the time for you.

Bluestar