This is a follow up to several posts I made to the list a few months ago. I was diagnosed with a 2.1 CM AN in early November. Symptoms were pretty minor, I had moderate tinnitus in the left ear, and significant hearing loss to the point there was still noise coming in, but little usable hearing.
At that time, I started asking questions, studying, and doing research. Watching and waiting wasn’t an option for me, the tumor was too big. That left surgery or radiation, and there was much I didn’t like about both. It seemed that the only good news was that folks do tend to live through these procedures. The rest of the good news pretty much consisted of not having any bad news.
While radiation was open to me, I didn’t like the thought that if it didn’t work and the tumor continued to grow, the only option then was surgery, and the surgery would be more difficult due to the way the radiation changed the nature of the tumor making it harder to get out than if not radiated. I also wasn’t crazy about this thing staying in my head. The MRI clearly showed it was touching and somewhat impinging on the brain stem. Not enough to cause problems, but enough to have pushed the brain stem off to the side away from where it would naturally be.
Traditional open surgery (recommended as Trans-Lab) scared me half to death. It sure seemed this was a good candidate for the cure being as bad as, or worse than, the disease. The stories and feedback from those who had been through traditional open surgery and had a tough time, sometimes for years afterwards, was both heart rending, and disturbing. I’m sure I don’t need to go through the laundry list of side effects and related issues for this group.
Another factor to not liking either radiation or surgery, was that depending on who you talked to, they both had a success rate of only 85-95%, in that the tumor might start growing again. Going through this once would be enough for me, I sure didn’t want to have to go through it a second time.
At about this time I heard about the Skull Base Institute and their minimally invasive, fully endoscopic procedure. It sure sounded good, with claims of 100% tumor removal, significantly fewer problems, and virtually no serious issues. Initial background info was good from my perspective. The surgeon (Hrayr Shahinian) had 10 years experience doing traditional open AN surgery, and had applied the well documented endoscopic surgical process to tumor removal over 2000 times, about 700 of which were for AN’s. I checked this out on the older AN mailing list asking for information on the place. Feedback from this group was less than enthusiastic, with some strong concerns voiced. I continued to do more research, and talked to six different people who had been through this procedure. Three names were given me by the folks at Skull Base as references, the other three I found on my own. All said the same thing, that what they said they could do, they did. More research, a phone discussion with the surgeon, and I was convinced this is what I wanted to do. I figured if it worked as planned, I was ahead in the game. If it didn’t, I was no worse off than doing traditional open surgery.
The Big Day was March 9th, I went in at 0700, did the usual pre-surgery stuff, and went off to sleep. When I woke up in recovery, it was to the good news that indeed Dr. Shahinian had removed every bit of the tumor, had already tested it to confirm it was benign, and had incurred no problems.
I’m now three weeks out of surgery. Surgery was Wednesday, and I was released from the hospital on Friday We spent the next three days nearby in a hotel just in case anything happened. I wanted to be near by just in case. Nothing did happen, and I flew home on Monday. I was pretty pooped the first four days out of surgery, I must have slept at least 18 hours a day. Minor issues were a slightly dry left eye (which needed Visine about six times in a couple of days to fix, it’s OK now), neck aches from being in a goofy position on the operating table for a number of hours (these too have eased up almost completely at this point) and a fair bit of dizziness, especially in the dark. The dizziness and equilibrium problems are now gone. The only residual effects of the surgery are a now total loss of hearing on the left side, which was expected. This turns out no be not as big a deal as I thought. My hearing was so poor I could hear noise, but had no useful speech discrimination. I could not use the phone on that side. I find being totally deaf in one ear not much change. Sometimes I think it’s actually easier to hear since there’s no garbled signal from the left adding into the good sound from the right. I do still have tinnitus, but it’s no worse than it was before. Other than these side effects, I have no other problems or side effects as a result of the surgery. The next step is to finish up healing, get my stamina back and get back to work.
Needless to say, I couldn’t be happier with the results of my surgery. I think I got the best of both worlds. The benefit of reduced-to-nonexistent side effects offered by radiation, with the knowledge the tumor is completely gone as in traditional surgery. It’s still early in the game for me, and I know it’s possible problems may surface in the future.
I’m aware there are many thought processes involved in making a decision on how to handle any AN. I didn’t want to appear persuade anyone to do anything. I did want to share my experience, and how glad I am I took the path I chose. I feel very positive the AN is gone, and that this was accomplished with hardly any problems. If anyone would like more information or has any questions, feel free to contact me either via this web site, or in e-mail at blackbear471@msn.com.
Zach
