AboutDina Q Goldin, Ph.D. Expertise Information and advice for Acoustic Neuroma patients who would like honest patient-to-patient interaction about their symptoms or about treatments and related medical procedures. If you are unsure if your experience is "normal", or are wondering whether your information is complete, feel free to ask.
Experience I am an Acoustic Neuroma patient and the founding editor
of the Acoustic Neuroma Patient Archive (http://www.ANarchive.org).
Expert: Dina Q Goldin, Ph.D. Date: 2/29/2008 Subject: AN and conflicting advice out there...
Question Hi,
I am female, 39, and recently diagnosed with AN (2.2x2.9, left side). I have had gradual hearing loss over several years and tinnitus. I recall some numbness in left side of face (cheek and jaw bone), but it when away quickly and i thought nothing of it at the time (in the last year i guess).
I have an appointment with a n.surgeon in 5 weeks time to discuss surgery as an option. I will also have the chance to discuss gamaknife with someone.
My ENT recommended surgery, and i am incline to go this route to get rid of it. However, the more i read the Net, the more confused I get. Surgery seems to have a lot more risks that radiation, however maybe the radiation risks come 10, 20, 30 years down the road (yikes). It also seems that surgeons are likely to recommend surgery, indicating many risks associated with radiation. But they have a vested interest in surgery! It's hard to be sure you are getting the best advice and this is important. I am also hoping to another baby as soon as i can. The AN finding has put this on hold... :(
thanks
Answer Hi,
The issue you stumbled upon is a key issue for AN patients. It is the biggest mistake for AN patients to have surgery just to get rid of the tumor, and by recognizing this you are ahead of many others. The surgery is likely to create problems which will then take years to get rid of, if ever -- and impact your quality of life worse than the tumor does. So one needs to be sure this is really the best option before choosing it.
Examples of possible problems after surgery include debilitating fatigue, ongoing dizziness, and excruciating headaches, which make it difficult to carry on with everyday responsiblities. Many patients report having to 'slow down' -- stop working full time, reduce their social activities, and find help in taking care of house and children.
It is impossible to know just how likely you are to develop serious problems from surgery, because it depends both on your individual case -- such as where your tumor is located with respect to various vital tissues that are nearby in the scull -- and on the experience of the surgeon treating you. The leading centers, for example, are much less likely to leave you on disability than a local surgeon.
It is true that on average radiosurgery is MUCH less likely to cause such problems. However, your AN is on the large side, so not every GammaKnife (GK) radiosurgeon will be interested in your case. But there is also FSR (fractionated stereotactic radiosurgery). It works the same as gamma knife, but over a series of sessions. This reduces the swelling of the tumor as it dies after treatment and may be more appropriate when the tumor is larger.
My suggestion is to make sure to consult with ALL Acoustic Neuroma specialists, surgeons AND radiosurgeons. Find radiosurgeons who specialize in Gamma Knife and others who specialize at FSR. It is best to find specialists that perform MANY treatments a year, best if at least 50, and have been doing so for several years now. There may not be any nearby, but since radiosurgery is an outpatient procedure (you do not stay in the hospital for weeks afterwards), it is not as daunting to go to a good center further away from home and be treated there.
Find out from all the specialists what YOU can expect if treated by them -- the chance of developing headaches, fatigue, facial problems, or balance problems. Find out about having a child after their procedure, or about being able to work full-time. Do not let them get away with generalities, they all must have statistics about the patients they have treated, so demand answers that are as concrete as possible. Also, do not let them tell you what they think about other procedures, only their own. For example, the idea that radiation risks come down the road is something one only hears from surgeons, not radiosurgeons, so I highly suspect it.
Then decide for yourself, based on what your own outlook for each procedure, which one you think is best suited for you and your life goals.
