I visited the San Diego Gamma Knife Center last week. It's on the Scripps campus at the Genesee exit off the 5 freeway. My appointment was for 7:30 am and I left Fallbrook at 6:00 am, arriving in the office at 8:20. I was mortified about being so late. Traffic was horrible - I don't drive the freeways at rush hour any longer and it's a shock how much worse that route (15 south to 56 west) has become. At the Genessee exit, because of the high density of medical offices and hospitals located there, the exit traffic was backed up for about a mile at 8:00 am.
Everything in that area is under construction. The Mall, both campuses, the shopping center across the freeway...there's no escaping red cones, fenced off lanes, cranes, dust. What a nightmare.
Inside the GammaKnife Center, all was calm. I'm not sure what time they get started in the morning but the physicians were suited up and at their computers. Ah...this is already different than the saw, drill and cut method where they'd be in a regular surgery suite. I met with a neurosurgeon, a radiology oncologist and a medical physicist. These three collaborate to map out the radiation each patient receives. I watched them plan a trigeminal nerve treatment and an acoustic neuroma.Very sophisticated computer equipment is involved.The actual tumor mapping computer devices used reminded me of photoshop tools, but I didn't dare make a such a comment. Once they figure it out on the computer and do the settings on the gamma knife, the rest is all automatic. They roll the patient in, throw the switch and away it goes.
The neurosurgeon and I discussed treatment for acoustic neuromas - conventional surgery versus GammaKnife radiosurgery. He cannot understand why anyone with a tumor of treatable size, that is, less than 3 cm. would choose conventional surgery. He does both types of treatment, so he feels he can be objective. "It's all about money," he told me. "Surgeons recommend surgery because that's what they're selling." Of course, you can accuse them of the same thing....they want the patients and they believe their method is best.
Can a patient get an completely unbiased opinion? - probably not. It boils down to this: either you can stand to live with your tumor, albeit "dead", in your head OR you have to have it removed. After six years of living with my own situation (dead tumor in my head) I believe all my symptoms have decreased in intensity over time - either that, or I've simply adapted and accommodate them better. Yes, I have deafness, mental fatigue and balance problems but so do most people after conventional surgery. I'm happy with my decision as I imagine most people are....it does little good to look back, especially with regret.
After conventional surgery I see many people with facial palsy, trigeminal pain, eye problems (dry or leaking), CSF leaks, headaches - some unceasing, plus deafness, balance and the same fatigue as mine, maybe worse. Recovery from surgery can take years and some people never do fully recover. People under thirty do very well after conventional surgery in my humble opinion. It takes much longer to snap back once you're a little older. One thing is certain - everyone is different and you really can't predict how individuals will react to treatment.
After conventional surgery I see many people with facial palsy, trigeminal pain, eye problems (dry or leaking), CSF leaks, headaches - some unceasing, plus deafness, balance and the same fatigue as mine, maybe worse. Recovery from surgery can take years and some people never do fully recover. People under thirty do very well after conventional surgery in my humble opinion. It takes much longer to snap back once you're a little older. One thing is certain - everyone is different and you really can't predict how individuals will react to treatment.
The purpose of my visit to the Gammaknife center was for preliminary intel prior to a tour we're having for the San Diego support group of the Acoustic Neuroma Association in January.
I took sign language as a second language in college and was always interested in the fact that many in the deaf community felt that they had no handicap, they thought hearing people were the ones at a disadvantage, that their communication was every bit as functional.
ReplyDeleteI think you are approaching this neuroma smartly and rationally.
I was worried that the gammaknife visit was for something scary.
ReplyDeleteThen I read the last line.
Barbara