Something is Wrong Again
Rich's story

Hi everyone. My name is Rich, I had my first AN at the age of 19, they operated on a 2 x 2 1/2 cm AN on 8/6/70 and removed it with some trouble but they got it. At that time the operation report under "Operation Performed" stated "Suboccipital craniotomy with gross total excision of right acoustic neuroma". On the 18th of August they did a 7-12 anastomosis and a few weeks later they did a tarsorrhhaphy on the right eye lid.  Then, sometime in late September or early October I was able to go home. No counseling, nothing about what to expect, either medically or, especially, psychologically, they just sent me home and congratulated me on the fact that I was going home.

Needless to say it turned into a very traumatic experience and not just for a few months, it still goes on today.  I went through all of the post operative symptoms that I've read about here,i.e., headaches, neck aches and spasms, pain at the incision site, tinnitus, balance problems, continuous problems with the right eye, facial paralysis, paralysis of the right side of the tongue, inability to smile ( one thing I can say is that I do have a wrinkle free forehead on the right side). Throughout the years I've developed or fell victim to facial neuralgia, increased bilateral tinnitus, severe tempomandibular joint disease (recently requiring surgery), increase in headaches and light headedness and dizziness, two different symptoms and yes there have been additional cognitive problems that could be confused with just getting old. But, there were such problems at the beginning of the post op stage as well as problems that delt with attitude, irritability, etc.

Imagine at 19 your face being paralyzed on one side, being deaf on that same side and becoming what I refer to as "Tongue tied" very often. It was a terrible experience to go through, especially with no one around that could tell me "Hey! I've been there, this is what to expect". Really now, I am not complaining as much as I am venting after 28 years to those who have been there; however, as far as I am concerned the AN seems to be a "never ending" problem. I really don't mean to scare those who are now going through this, especially the younger people.

Now, with things worsening over the past few years and symptoms resurfacing I've been seeing a few different types of physicians, getting prescribed different medications, etc. All of a sudden I come to realize that I am in the same predicament, only 28 years later and a totally different outlook on life. I've tried very hard to tell myself that an AN is not a serious problem and all of these years I've kind of convinced myself of this. At the same time I've figured that I am a very convincing hypochondriac. But now I'm facing another AN and I'm scared.

I knew there was something wrong again, this time more so then the first time. There was a CT done to look at the left side and I was cleared; but at the same time told that there could be one on the right side. A few years later an MRI was done, after some debating about the metal clips in my head from the 1970 AN surgery, and a 5mm lesion was reported. 16 months later another MRI was done on the same machine and this time the report said that the lesion was 8mm. However, the same radiology physician stated that there was no previous films to compare with?? That took some time to work out too, and believe it or not it has not been finalized to this date. I am still waiting for a comparison report after locating the first film and making sure that the radiologist now knows what needs to be done.

I've read stories over the years that really make me think of how very, very lucky I am. Most recently I've been reminded of this through the stories posted in the ANA and the AN Archives and I think of how this could have helped me during the 70's and on. In my line of work as a Hospital Administrator for 27 years I've only met one other person who had an AN, if I remember correctly he was a dentist and was also going through a recurrence.

Well, if you are reading this then I overcame my fear of posting to an open forum. I can only say that all of this, the ANA, AN Archives, etc., are all excellent for all of us, experienced and not experienced, and both. Thank you to all.

Rich Darcy <radarcy AT bestweb.net>
October 1998

Last Edited: Friday, November 01, 2002