My Mother has AN

[Mary]

  My 81 year old mother has AN.   We (my brother and I) found out about this in November of 04.   I thought she had Dememtia.    Admitting her to a Gere. Phsyc. unit they found the tumor by an MRI.   She also had fluid on the brain.    She was sent to the hosp. and a shunt was put in.   It was like night and day.   Before, she couldn't count to 5.   It was 3.5X3.3X3 cm in size.   Now we had to decide whether to have it removed or not.   After talk to doctors, reading from the library, looking on the internet and talking to people....We decided not to have it removed.
To start from the beginning, I noticed things many yeard ago.   When I would cut her hair she would lean to the right.   I'd say "sit up straight" and she would reply " I'm am."   She would have head aches and around 02 she had tingling on the right side of her face.  In March of 03 I talked her into asking the doctor for a CT scan because I thiught maybe she had a tumor.   The CT scan came back normal.    Later to find out the tumor was on the CT scan but was hard to read.   They should have used contrast (or color).   In May of 04 she fell at my house and then a month later she fell at my brothers house.   Both falls she did not get hurt.
September of 04 she fell on her driveway and broke her pelvic bone.   Now using a walker she was still able to walk.   I went to see her in October for a week.   She had been throwing up some.   From Oct. to just before Thanksgiving she had dropped 20 lbs. (she was only 125 lbs to begin with ) and got very week.   I live over 2000 miles away and my brother lived 3 hours away.   He was going up every weekend to see her.   One Sunday morning he called because he was scared.   I went to her house for the week, got her well enough to bring her here.   I would get weight put back on her and let her break heal.   Things didn't go as planed.   She got worse.   That's when I called home health and put her in a phsyc. unit.   The rest is above.
Her balance is so bad she needs 24/7 supervision.   I quit my job to take care of her.  I will not put her in a nursing home.   I realize some day I my have to.  All I can say is thank god for my husband.
 She has paralysis on the right side which affects her taste buds and eye.   She still walks with a walker and we got her a lift chair.  She asperates when she drinks so I have to be careful  she doesn't get pnemonia.   She continually gets UT infections because her imune system is poor.   Her short term memory is very bad and she forgets about safety.
The hardest part for me is not knowing.   What's going to go wrong next?   What do I call the doctor for and what do I take care of myself?   Other than all of this her body is very healthy.

[GM]

Mary,

You and your family are in my thoughts and prayers.  It's unfortunate that it took so long for her AN to be found.  She definitely has the classic symptoms of a large tumor, and from her symptoms I would probably guess that it is pressing on her brain stem a bit.  The reason she is having so many problems is that the tumor is also pressing on the nerves that control her ability to swallow, her balance, and the facial nerve problems.   You didn't mention if she had headaches which is usually the first sign of pressing on the brain stem a bit. 

You may want to see if the doctor can put her on a steroid treatment (Prednisone) as that may help with the swelling a bit...it can't hurt.  This medicine does have some side effects...so pay attention to the doc (sleeplessness, jittery)..but it's real good stuff...I'm on it now.

Your Mom is in-between a rock and a hard place right now.  If they attempt to treat the tumor with radiation...it may swell a bit (up to 35% of patients tumor swells slightly after treatment), and that may cause her more difficulty.  Another possibility to discuss with the Docs is a partial removal of the tumor, or maybe even a trimming of the skull by the tumor, to relieve some of the pressure on the hearing nerve.  I have read of other older patients that had this done before.

You asked what you can do yourself...become informed for her about Acoustic Neuromas.  You're in a great starting point.  You'll run across surgery patients, patients that are "watching and waiting" for advances in technology...and like me Radiation patients.  I still have my tumor...it just got "zapped" with some radiation.  It would probably be a good idea to take your mom to the doc if you see or she reports changes in her hearing, vision, if she has vertigo, or runs a high fever.  If you can get a your Mom's health better it could be possible to attempt a radiation treatment (FSR or Gamma Knife) as I have read some posts of larger tumors being treated. 

Finally, these are not hereditary...  Because your mom has one doesn't mean that you will.  I am the only one in my family that has one (both sides!).  Take care of your Mom and keep us posted if you need any further info...  You'll be in all of our prayers.

Gary