Open to new ideas
Ray's story

I am deaf in left ear from birth, and have a 1.2 cm AN in right ear. I live in Southern California, Ontario/Upland area to be exact.  My tumor was discovered in Sept 1996 at the age of 45, after I went totally deaf in my good ear... and so I was totally deaf.    They did an emergency Middle Fossa Decompression, which is they went in the side of the skull above and slightly behind the ear on the affected side... elevated the brain and then took out a chunk of the skull at the canal thru which passes the nerves and blood supply to the ear.  This took the pressure off the nerves and blood vessels, allowing my hearing to return.  It was a very slim chance but in my case it worked... now this has bought me some time to wait and watch and investigate.

I have been researching this since then.  In talking to several surgical specialists at House Ear in Los Angeles, Ca. and one of their students that is now on his own in Utah, they cannot give me any chance beyond a slight chance that hearing will be retained with surgical removal... this is dismal to me. I was totally deaf for 4 months and do not wish to go back to that. I and am now in a wait and watch mode, while I hope a reasonable alternative comes along to eliminate surgery.  The doctors say I have maybe 4-5 more years before I have to do something seriously.

I have investigated heavily all the options as I can find em.  FSR seems to be the ultimate option so far. Reason being that I believe it offers the best chance of killing the tumor while still preserving the hearing... with no invasive surgery into head again.   The tumor will still be there but not alive and not growing!  My Doctor has written a strong letter recommending not to have the FSR, as it can turn the tumor cancerous.  I have not been able to substantiate this, and no other doctor I have talked to can point to a single instance of an FSR patients tumor developing cancer there...

Recently, I changed jobs, and moved to a different state and am still waiting and watching... I have another MRI scheduled in September. I was just approved for new insurance with new company, after the obligatory waiting period of probation. It was scary waiting and worrying -- will anything happen while uninsured? Well nothing did...  I am totally covered again, so I have to say the pre-existing condition clause is not bad at all...

I have lost hearing several times, totally, and each time I start on the steroids and each time the hearing comes back as the swelling decreases.  However, an interesting experiment I tried -- was to not take anything and wait and sure enough after three days the hearing came back.  So, the last few times this happened, I have not done anything and hearing is restored after a few days.  Now, this has not happened for about a year now, but was very frequent for a while there. The doctors think this is just the tumor sometimes putting a bit of pressure on the nerves.

Well my friends, so far so good... I lead a normal life, doing just about anything I choose.  The only thing I have that ever slows me down is the balance at times.   With some precautions, and knowing how to help people talk to me, it all works well for me, and I could not be happier.  But I hate the thought of having to go thru that surgery again...  and to lose my hearing totally is just unacceptable to me at this stage...  I keep looking, hoping for some new some new option yet to be discovered --   I am always open to new ideas and seek knowledge.

Good day to all and best of luck in all your research.  Remember to stay open-minded at the opinions of others.  Any questions feel free to contact me... 909-981-8767.

Ray M. Olsen <Lokas47 AT aol.com>
August 1998


Updates

(1/99) Two weeks ago, I had another MRI. It is FANTASTIC NEWS to me to learn that the tumor has reduced in size by half! The original size of the tumor was 6 mm by 6 mm.   That was in 1996, then in 1997 in follow-up MRI the tumor was sized at 1.1 cm by 1.2 cm, so I was concerned that the darn thing would now be 2.0 cm or bigger... well imagine my surprise when the Radiologist came back and told me that the size was smaller! I did not believe him and requested a new reading of the films, which they did, and then just yesterday confirmed that the size is now no larger than 6 mm by 6 mm by 7 mm.  I can't begin to describe the relief and joy at this news (big smiles here).  Needless to say my fiance and I broke open the wine we had been saving and had one fine celebration...  Who knows, maybe this time next year I will be in a panic all over again, but for now... all I can say is "YES"!

(11/99) Yesterday I received the news and a faxed copy of my latest report on an MRI done this past week.  The latest MRI shows that the tumor has remained the same size with no new growth. Still at 6 mm X 7 mm. The doctors believe the opening of the bone cavity for the tumor allowed it to spread out... why it shrunk back is the big question... I tend to think a higher authority was watching out for me that time... I wish we all could have this type of luck with our tumors.

(11/00) I have had the results of my latest MRI taken last month Oct. 2000, and the tumor is growing again so I may elect to start the proton beam treatments this winter or next winter. I am sure of my choice of treatment now, but not sure which year yet.   Here is the link: Proton Therapy at the Loma Linda Proton Treatment Center... I still have to wear a hearing aid in my one good ear (the AN ear at that) to hear voice communication, but am counting on treatment to not diminish that hearing at all. If it does? Oh well... I don't need my ears to see!

Ray Olsen - Utah
wait and watcher-- still watching, still waiting ...<G>

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Last Edited: Friday, November 01, 2002