As a reminder to myself of how fortunate I have been, I am putting my story in writing.
My symptoms, ringing and fullness in the right ear, came on quite suddenly. After ruling out wax buildup, ear infections and allergies I went to a local ENT. He sent me to an audiologist to see if my hearing was involved. My hearing was pretty much the same in both ears but he decided to send me for an MRI to see what was causing my complaints. There it was, a 2.5cm acoustic neuroma.
My local ENT had only seen 3 in his 15 years of practice and referred me to Dr. Balkany, the director of the ear clinic at the University of Miami Hospital. It was a 4 hour trip, but away we went. Dr. Balkany and his fellows and students looked at my MRI and agreed with the diagnosis. One of the students asked if Dr. Balkany would have sent me for a MRI so quickly. He smiled and said "No, but it was lucky that he did!" I was then told of the suggested surgical technique, the retro-sigmoid approach. Surgery should take about 6 hours.
Dr. Balkany then called a neurologist, Dr. Heros, and asked that he stay in his office until I got there. Boy were things moving fast. Dr. Heros was the director of the neuro-surgery unit at Jackson Memorial Hospital, also in Miami. I was being directed to the top doctors. Both doctors explained that they would be monitoring my facial nerves throughout the procedure to assure no facial nerve damage. If necessary, they would leave some tumor behind and use gamma knife surgery as a follow up technique to keep the tumor size under control. They said in a offhanded manner that they would 'try' to preserve my hearing. That led me to believe that my hearing was a goner.
Surgery was scheduled but due to my husbands sudden illness which required 2 surgeries to remove a sub-dural hematoma (that guy just didn't want me to have brain surgery until he tried it first) was postponed a month. Finally the surgery was set. I was admitted to the hospital the day prior to surgery for the pre-op tests. Surgery was on a Friday in October 1999, and it took over 10 hours.
I awoke in ICU as expected, but I was in a lot of pain. But the pain was in my hip not my head. It seems that when you are very overweight and on your hip for over 10 hours you get a miserable cramp. I had to get pain shots for some relief. After breakfast they removed my tubes and sent me to a regular room. I had doctors and students coming in constantly from both the ear and neuro surgical units:
"Smile", "what day is it?", "where are you?", "what is your name?"
The "where are you" was the one that always tripped me up. My husband just got out of one hospital and I was in another. I was admitted to University of Miami but I was in Jackson Memorial. But I was doing okay. But now they could not find my glasses, which were left in another room. They wanted to check for double vision. Double vision? I couldn't even see the wall! Luckily the night nurse that prepped me for surgery came by to see how I came thru surgery. He knew exactly where my clothes and glasses were. Ok, so now we are back on track.
The surgery went pretty much as expected. They severed my balance and hearing nerves and got out most of the tumor. They got me up and walking, I was wobbly but never fell over, my vision was not quite right but it was not double either. It was described by someone else quite accurately as being flat, like looking at life thru a camcorder. I had a real stiff neck which made movement rather difficult. I really was not in pain but very stiff. I had no headaches and no dizziness and no nausea. But as soon as the lights went out I walked like a crab.
On Monday the neurosurgeon said I could go home. I opted to leave the next day so I could arrange to have help at home. It was a long drive but I had no problems. Wed I went marketing with my sister in law. Thursday I just directed people as they prepared my house for the hurricane we were to get the next day. Sunday I went to church and sang with the choir as usual. Monday my stitches came out. I was getting much better dealing with my lopsided balance. In a few days I started driving around town. My face now started to slump a bit more but my vision was getting back to normal. I had a temporary problem of dry eye but it cleared in about a week. Strange, I only would cry out of the non-tumor side.
3 weeks after surgery I went for a follow up visit with the surgeons. They were quite pleased and amazed that I had no headaches. The neurosurgeon said that my facial problems would get better and that it was not unusual for the face to get worse after surgery but it would get no worse and should improve soon. (And it did.) I was given the ok to resume my life and do whatever I wanted. I asked if I could sky dive (trying to shake up the doctor) he said only if I used a parachute.
5 weeks after surgery I felt strong enough to return to work. 4 months post op I went for a new MRI. That was my new baseline. There was something there but the packing from the surgery looks like tumor so follow up mris would show if the tumor was changing. 15 months post op I had another MRI. They could find no sign of the tumor! The doctor was so pleased that he said he did not even have to see me again. He just wanted me to send an annual MRI he would call me if anything looked suspicious.
My face is still a little off, but not by much and is still improving. I still only cry from one eye so I get to save on tissues when watching a tearjerker. My balance is very good now. I only have problems in 'totally' dark situations. I still have a ringing in my ear, that will never go away. Strange that you can hear a buzzing in a totally deaf ear. For the most part I did not miss the hearing in that ear. I just make sure I sit with my good ear towards people etc. Large noisy rooms continue to be a bother. The loud sounds drown out all conversation.
Now 2 years post surgery they have found that some sounds are getting thru to my deaf ear! A hearing aid has helped boost that sound, so now I can hear the person on my right as long as the ambient sounds are not too loud.
I survived! Brain surgery is a frightening thing. Keep in contact with others who have gone thru this ordeal. Some have had difficult recoveries, others, like me were fortunate to have a rather uneventful recovery. ANers seem to bond to others and want to help. Maybe it just helps us with our own continuing recovery.
If you have any questions or just want someone to keep you company while you go thru this please email me.
Good Luck and God Bless
Maureen Seewald <lhiy AT juno.com>
Big Pine Key, Florida
Back to Maureen's entry in the Patient Directory
Last Edited: Wednesday, October 30, 2002