I have a tumor in my auditory canal. After several discussions with two different neurosurgeons both seperately and them together (one does conventional surgery only and one does both conventional and stereotactic radiosurgery), and lots of research on both methods and the results, my wife and I have decided on radiosurgery. My tumor is still very small so radiosurgery is still a good option.
My Neurosurgeons suspect it may be an acoustic neuroma (Schwanoma) but cannot tell for sure without tissue. It may be a hemangiomablastoma but I don't recall hearing of this being a known location associated with VHL. If it is an acustic neuroma, it may not be associated with VHL. I guess it is irrelevant either way as I have to address the tumor no matter what it is. I am wondering if anyone has ever had an hemangioma in the auditory canal?
The decision to go with radiosurgery was a tough one as both methods have their pros and cons. Conventional surgery will completely remove the tumor and recovery can begin immediately, radiosurgery will leave it there and then it is a "wait and see what, if anything happens". There was nothing to be found on the net about hemangiomas' in the ear but there was loads of information about acoustic neuroma.
The Acoustic Neuroma Society has much information on the pros and cons of each method. Most of the info was pretty much 50/50 either way but then I found some info by the Mayo Clinic, they mentioned a lower dose of radiation helps to lower the incidence of facial neuropathy but were not very specific. Then, my wife found a site belonging to the University of Pittsburgh where they have performed "stereotactic radiosurgery on over twelve-hundred patients with an acoustic neuroma over the last 19 years with the same type of machine as will be used on me and they have done extensive follow-up. An initial dose of 18-20 Gy (Grey) was used. By 1992, it was decreased to 14 Gy. repeated re-evaluations of the cranial nerve response prompted additional small decreases in dose in order to preserve cranial nerve function. At the present time, the usual dose given is 12 to 13Gy. This dose range has been in use for over ten years." They continue to say their research shows that "at a tumor margin dose of <13Gy, the rate of facial neuropathy was 0%, and above 13 Gy, 2.5%." The info is at http://www.acousticneuroma.neurosurgery.pitt.edu/gammaknife.html Having read this info, I called my neurosurgeon's number and left the message with his nurse that I needed him to call me as I still had questions for him about radiosurgery. He called me back that evening and I reported to him what I had read (he was the one to tell me about how much info there was on the net about acoustic neuroma) I asked him what dose he used, he said he uses 14Gy then he expressed concern about having the dose so low that it wouldn't kill the tumor, I reminded him of the ten year use with good results of that dose in Pittsburg. Dr. Dempsey then said he could probably lower the dose to 13Gy. I said "great! we will go with the radiosurgery and the dose will be 13 Grey! He chuckled a bit about how unusual it is to recieve such a request from a patient.
This will be surgery # 16 dating back to 1974 so not having to deal with the whole "after surgery experience" was one of the factors (I have had some medical chalenges in the hospital post surgery the last three times). Good chance I will lose hearing in that ear at some point (2 months to 3 years) but a very small chance of facial neuropathy of that side, and then if there is, very good chance it will be temporary.
I want to add that I feel very fortunate to have neurosurgeons so knowledgeable about VHL and also so receptive and open to discussion. Like many of you, I have years of experience dealing wth the medical profession and for the most part, the doctors and sergeons have been wonderfull. I would like to especially thank Dr. Peter Dempsey and Dr. Carlos David both of the Lahey Clinic in Burlington, MA
Well, thanks for letting me go on, My wife and I feel pretty good about the radiosurgery now:-)
Rick
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