I have a 2cm left side AN found the first of April. I discovered it due to hearing loss and tinitis. The ENT that discovered the AN was great and sent me on my way for research and consultations with surgeons and radiosurgeons. After extensive research I decided to have the FSR done at Johns Hopkins and finished the fifth session Tuesday June 7th. I am from Columbia South Carolina and made several trips to Baltimore for consultations and simulations before the actual treatments started on June 1. Dr. Riggamonti was very straightforward and did not sugar coat anything. He insisted that I consult with Drs. about the microsurgery which I had already done before consulting with JH. I had also consulted with Gamma Knife Docs. He said that he had a 95% sucess rate in controlling the AN's after 5 years. He said that he would not do the radiosurgery again in case of a failure and surgery was the only option in that case. He said that if surgery was done after radiation there is a very low rate of saving the facial nerve. The tumor becomes very sticky and the facial nerve is hard to protect. He cautioned me about the tumor swelling 6 to 12 months after treatment and they will try to control the side affects with steroids if necessary. He prefers not to use them if possible. He says not to do anything for two years except for MRI's every six months because people sometimes mistake the swelling and dying of the tumor as regrowth and rush into surgery. He wants closed MRI's over the open ones because the closed ones are clearer and more accurate. I can send him MRI's after 6 months and he will read them and call me but I prefer to go up there for the MRI's and talk to him face to face. After the two years I will probably just send him ones from here. I am confident I will be in the 95% sucessful group but am prepared if not.
The process is not painful but is not comfortable either. I was very tired but I don't know if it was from the procedure or the travel and stress. I still felt good enouth to go out to eat at the great places in Baltimore and surounding areas though! There were several people having AN's treated at the same time I was there and that gave me comfort and support as we compared notes. There were also many people having 20-30 treatments for serious cancers and I considered myself very lucky to only be having five for a non-cancer type tumor. It does bring home the fact that no matter how bad we think we have it there are people going through much worse.
I have talked to people who had successful outcomes from surgery who think I am crazy for having the FSR and I have talked to people who had GK and FSR who are convinced that they made the right decision. I am convinced that I made the right decision for me but I do hope that one day there will be a clear medical choice depending on the individuall's circumstances--AN size, patient age, hearing, balance,etc. If they can do this with heart and other problems I don't see why the patient is left with all of these decisions with this problem! No matter which option-surgery or radiation-is chosen there are still more decisions to make as to type of approach and doctor and I think the advice of this list to go with Drs. with the most experience is the best.
Thanks to all of you for your help and advice as we all travel this road together. Best of health to everyone!
David Jameson
