Hi,
I have just recently been diagnosed with AN. I saw the neurosurgeon last week who does not recommend surgery...we are on the same page. He is recommending CK. We did not speak much about side efects. I'm really concerned about swelling and steroids. My tumor is 2.5x2.7 cm. I am almost 65 years old (in another month or so). I have a second opinion with a neurosurgeon from the U of Colorado in the Denver area on the 18th of this month. The neurosurgeon I saw this week seems to have experience with CK but I don't have a feeling for how much. Should I be more concerned that the radiology oncology guy is more experienced that the neurosurgeon. I want the best, but I don't really know what that is when you are looking at credentials. Any information would be appreciated as well as info on steroids, etc. thank you.
Welcome, although I'm sorry your AN diagnosis brought you here.
As
Jan stated, a radiation oncologist should be better informed about radiation procedures than a neurosurgeon and, conversely, you would expect a neurosurgeon to be better informed about AN surgery than he is about radiation. I would go back and ask the first neurosurgeon you saw why he recommend radiation. I expect it may be due to your age.
Whether you chose radiation or surgery, you want to ask the doctor how much experience he has with acoustic neuroma patients. Many neurosurgeons do a lot of operations on the spine but have minimal experience with skull-based tumors. Radiation oncologists often treat various forms of cancer but have little experience with acoustic neuromas. I was very fortunate to have a neurosurgeon that had decades of experience removing ANs
and a radiation oncologist that also had experience with using radiation on acoustic neuromas - and they worked as a team, because my neurosurgeon had a good grasp of radiation procedures. The result was a complication-free AN surgery that debulked my large AN from 4.5+ cm down to 2.5 cm, then used FSR (
Fractionated Stereotactic Radiotherapy) to destroy it's DNA and, effectively, kill it (
stop it's growth - forever). Today, four years later, I'm doing great and highly recommend the debulking/radiation protocol for AN patients with large tumors, when their doctor approves. Whether that applies to you is unknown, only a doctor can tell you that. However, should you chose radiation, it has an excellent chance to be completely effective. Many of our member's have undergone one of the 3 forms of radiation treatment for their ANs; FSR (
Fractionated Stereotactic Radiotherapy), GK,(
GammaKnife) or CK (
CyberKnife). I underwent my successful FSR treatments (all 26) when I was 63 years old. I suffered no ill effects - but my AN did!
(it 'died' - R.I.P.)
I trust that you'll have a similar experience. Please try to stay connected here because we want to help and support you. Thanks.
Jim
