3 Months post op with questions

[kzanana]

11/25/08 I had an AN removed, right side (the size of 2 peas). Had only 20% hearing left and it was gone after surgery. The tumor was growing in the balance nerve and it was removed as well as all the tumor. I have a 9"scar from the top of my ear and down 1"into my neck.the whole side and back of my head is still sore to the touch and my hair hurts. Today is 3 months post op and I still feel like crap most days. I do not work and don't see how I could. It is hard to explaine how my head feel all the time. The major pain has passed and now it is just a constant weird feeling of, thick, full ,heavy  with constant dizziness. I walk like I am drunk at all times. Some days are better than others but most are bad.Very funny to watch.People in public think I am drunk or stoned and shy away from me. I have had PT and walk a lot since the doc said that was the best for me to do. When I get tired my brain slows my speech and movements down. I was told the normal recovery time was 3-6 months so I am half way there if I am average. I feel seasick most hours of the day.. Last night it snowed and I almost fell over just watching it fall.  The dryer noise makes me crazy. My head just vibrates the whole time it is on. Even talking vibrates inside my head and I feel weird. Sneezing or coughing are the worst and mess up the inside of my head for about 2 hours. It feels like a bomb going off from the inside out. 
          I guess i want to know that this is all normal after this  kind of a  9 hour brain surgery with the balance nerve removed. I was told i would feel normal again and the left side would compinsate for no balance on the right by 80%.
          I'm hoping someone will give me hope that they went through the same problems and it just took more time.
                                        Scared and tired of feeling bad but gratefull to be alive.  Kathy in Puyallup 

[hruss]

Hi Kathy,

i had a surgery a month before yours, o we are in the same boat. I do have problems with my balance like do, especially when i have to stand on one leg to put my shoes for example. I always have to prop on smth otherwise it is very likely I fall. My problems increase in the evening though, when it gets dark I completely lose the sense of orientation. I have been told that the left side will compensate for the right but i guess what have been done by now is the most can be done.  I do not expect the left side to compensate more than that.
When I am tired I slow down my speech (even more than i do it regularly - I have a facial paralysis so i need to talk slow than usual) and my thoughts are very inconsistent. Till now i have been on a sick leave for the past several months so just running my errands and visiting classes (I started studying an MBA 2 moths post-op) make me very tired let alone work. And unfortunately, I am starting work back from March 6 2009, which will make the things worse, I guess. But i do not have that much of serious problems coming from the incision (my tumor was big too - see my signature). My hair and the place itself still hurt and I could hardly touch them but my head does not hurt inside!

If I call help more, please do PM me!
Hrissy

[kenneth_k]

Hi Kathy.

I fully understand your frustration and I'm sad to hear, that you feel your recovery is slow and painful.
In my opinion, it is still to early to give up. It is not a small deal to recover from brain surgery. At my 3 months post op, I was far from impressed. Today I'm almost 5 months post op, and things are better but not perfect.

These things take time, and my doctor told me there is good hope for further recovery up to at least 12 months post op.

Be patient and try to look at the bright sides also. I know it sounds more easy than it is.

Regards, Kenneth

[satman]

hi kathy,sounds normal,i still have all that going on and my surgery was in april 2008,hang in there.
it does get better as time goes by,a lot of time .

[JohnnyDiaz]

Kathy, I had 3 surgeries - all totaling about 13.5 hrs... Boy did I know how you feel. I mention "did" because I feel great now and I am about 5 months into this. Like Kenneth commented - my Dr. said that I should expect to have symptoms for about 12months as well. I really worked hard at PT and sometimes I would take a few days just to recover from it. But one day everything just got better... My constant headaches went away, my balance became better. Just hang in there, your body is learning to make adjustments for what you went through. And you are right... it is awesome to be alive to enjoy our families and friends...  God Bless....

[MAlegant]

Can't comment on the balance issues, but as for the rest, the passing of time is really your best friend.  I'm 7 months post-op, still have some issues but am feeling good most of the time.  Hang in there, you're perfectly normal (for a brain surgery patient, that is.)
Marci

[Jim Scott]

Kathy:

I'm sorry to learn of your continuing post-op problems - but welcome to the site and the forum, anyway.  I hope it can be of some help to you. 

As previous posts indicate, some post-op AN patients experience the same types of complications you have.  During AN surgery, removing the balance nerve is pretty much a given and, depending on the type of surgical approach used (and other factors), losing your hearing on the AN side is not at all uncommon, although not always guaranteed, as it were.  You might wish to touch base with your doctor and let him know what's going on, but don't expect any easy solutions.     

As you probably can glean from prior posts, every AN surgical patient seems to have a slightly different experience.  This is due to our individuality and of course, the exact location of the tumor, the type of surgery employed and the skill and expertise of the surgeon performing the operation, which is very specialized.  Although I can't say that I had the exact same problems, I can say that others have and, in time, the problems usually resolve, although never soon enough.  Sometimes AN surgical recovery requires  an extraordinary level of patience.  Harboring some frustration along the way to wellness and normalcy is both natural and, here at least, fully understood.   I hope and will pray that you have better days ahead. 

Jim