Just before Christmas I met with the second member of the neurosurgery team, Dr. Steven Cheung at UCSF (otolaryngology- special expertise with acoustic neuromas). I had seen Dr. Cheung several times before deciding on the Gamma Knife Surgery (radiation), but not since.
I was nervous, anxious to hear his opinion about my tumor expecting some simple explanations. But, not so! His consultation was educational and challenging because he insisted I (me, not them) had to decide what to do after evaluating the various options.
I could choose not to operate now at all, to wait longer and see if the tumor grows, how much, at at what rate. However, it has been steadily growing for the past six years in spite of the Gamma Knife Radiation which should have stopped the growth. Fact: The larger the tumor and the older I get, the more risk the tumor is to my health and the more difficult the surgery.
After concluding the surgery is the only option I see as viable (and Dr. Parsa had already advised it and sooner rather than later), Dr. Cheung gave me two types of surgery to consider. (This was new information and the reason Dr. Parsa wanted me to meet with Dr. Cheung.)
The first is retrosigmoid, an advanced technique with the goal of preserving some of my hearing hoping for limited damage to the facial nerves and balance system. This is the method Dr. Parsa seemed to advise and it sounded good until I met with Dr. Cheung. He explained this is the more dangerous surgery with the downside involving the cerebellum, so it is riskier with a myriad of possible side effects. If I was young and had more hearing left in my ear than I do, this would be the route to choose.
The second is the older method which seemed to be the best for me, translabyrinthine. The huge downside to this technique is that the entire middle ear would be removed leaving me with NO hearing EVER in the effected ear.
Entering the site this way gives the best line of sight to the facial nerve allowing a higher chance of less damage to that nerve. (75% chance I won’t have any additional facial nerve damage). The facial seizures making me look like Popeye are a nuisance but not the main problem.
I was told the balance problems I’ve had would go away (80% chance). The damaged right middle ear would be absent causing the left middle ear to take over. After some retraining, the brain is supposed to adjust and use only the left middle ear as its balance center.
The balance and dizzy/spinning episodes are driving me crazy so it would be fabulous to get rid of them. HOWEVER, after reading reports on the Internet, MANY people continue to have serious balance issues, regardless. I consider the balance problems to be as horrible, maybe more so, than the hearing loss.
Dr. Cheung gave many pros and cons of both surgical options not wanting to make the decision for me. As the meeting concluded I felt clear that for a person with a tumor the size of mine and for a person of my age, the translabyrinthine method was wiser.
Here it is January 9, 2011 and I have told the doctors I’ll choose the surgery that will do away with my right-ear hearing which I hate to do. (my family says "You can't hear out of it anyway; even with your hearing aid." But, I say, "I treasure what hearing I do have, especially when listening to music.")
Conclusion: My surgery is set for February 9 but I am conflicted. Should I try to maintain some of my hearing risking headaches and a longer recovery?
What I DO know for sure, is that each patient’s tumor and personal reactions are unique and the doctors can only make educated guesses as to the outcome. I am going to re-consult Dr. Parsa.
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