Advice from a Surgery Veteran
Alice's Story

I'm now facing my 45th birthday all too soon, but was 26 when I was diagnosed and had my AN removed. In retrospect, I knew it had given me significant symptoms for a couple of years prior to diagnosis, which is not surprising since it was a 3.8cm tumor.

I was in pretty good shape physically, although I have never had either the inclination or the ability to be athletic. I think the AN probably helped me keep my weight to a slim and trim figure without the effort of exercise;-) Since surgery, I seem to put on weight all too easily and have trouble keeping my weight down to the numbers in either the new or old "recommended weight" charts;-)

Please keep in perspective that mine was removed back in the infancy of AN technology. I was fortunate that CT's were invented for the physicians to get a good picture of it before they operated. Due to the size of the tumor, I was *really* sick and showing classic symptoms of brainstem compression. Hydrocephalus had shut down the cerebral spinal fluid flow in a ventricle and caused hemorrhaging in my eyes as well as a horrendous cycle of nausea and vomiting. I was a sick puppy.

My surgery was more lengthy than most because they decided to do a modified sub-occipital combined with translab. I was on the operating table and under anesthesia for 17 1/2 hours. My surgeons were Charles Luetje [neurotologist] and C. Keith Whittaker [neurosurgeon] from Kansas City Missouri. They were both very good surgeons prior to teaming up for AN's, but recognized that together they could accomplish more for the patient than either could individually.

Surgery was successful -- first because it saved my life, and secondly because it preserved the facial nerve.  I had some swelling which took a few weeks to subside. I had a very dry eye for the first few weeks, and that caused a lot of pain. I still do not have tears flow from the eye, but have adequate moisture under the lid to support soft contact lenses. Although I have to be careful with the lenses and they tend to get dry and need supplemental drops, my eye actually feels better when the lense is in and hydrated. When I go for some time without the lenses, my eye feels dryer.

About 3 weeks after surgery I had a set-back because I developed a blood clot under the skull which had to be removed. It threw us for a real scare, because I ran a very high fever and had the mother of all headaches when it developed. After the clot was removed my recovery proceeded pretty quickly. Within 2 months of surgery I was back to work 1/2 time, and worked 1/2 time for only two weeks before resuming full time. In retrospect, I wish I had continued part time a couple of more weeks. I was pretty fatigued returning to work full time that soon.

Balance was never a big problem for me post-surgically because [I think] it was such a problem pre-surgically. When the tumor was removed, my remaining balance nerve did a fine job of taking over completely. I was a little unsure and clung to whomever was with me for those first few trips down the hall, but was soon doing quite well on my own.

My hearing was really bad in that ear prior to surgery and was lost completely due to the translab approach. To be honest, it has been much less frustrating post surgically than having the bizarre, squeezed, distorted sounds that I heard prior to surgery. I have learned to make the adjustments which help me to optimize my hearing -- such as sitting at the corner of a table so I can hear most everyone, or not sitting in a restaurant booth with my good ear to the wall.

I have developed increased tinnitus after surgery. This is not uncommon,  but again something I've just learned to adjust to.

Here is my advice to those preparing for AN surgery:

I did not have small children to care for during my recovery. If I had, I would have had to rely upon other people to care for the child for several weeks. This is a time for someone with small children to say YES to all the friends and family who offer to help 'do something.'  Ladies in my church set up a schedule to bring me lunch my first week home from the hospital and it was really helpful. If you have friends or family who would take on the tasks of helping with food, laundry, and child care for the first couple of weeks home from the hospital it would be a tremendous help. You will probably be worn out just trying to get everything else done. Good friends really want to be able to contribute help in a specific way. The specifics of food, child care, and laundry give them a chance to be helpful.

There is life after an AN, and when you are young you have the advantage of more youthful energy and strength. Surgery can really zap your strength, and you may realize for several years that you have little reserve energy. When you get worn out, rest. Recognize that there is much you can do, but you may run in to personal limitations that you have to learn to recognize.  Give yourself permission to say NO to the requests or demands of others, and always get plenty of rest.

Please feel free to ask me questions to find out anything that you need to know.

Alice Trussell   <alitrus AT>
Science Reference Librarian
Kansas State University

July 1998

Last Edited: Wednesday, October 30, 2002