Hi ginco1. I checked in with one of our ENT physicians about your questions. He indicated that this is a very rare condition and there aren’t really specialists in it. He said that Mayo Clinic does treat it, and has likely seen as many patients with this condition as any. If you’re interested in requesting an appointment at Mayo Clinic, you can click the “Request an Appointment” button at the top of this page. Thanks.

My mother successfully had one removed 8 years ago and is alive and fine today. She followed the removal with radiation by Dr. De los Santos at UAB. The tumor was removed by Dr. Michael Sillers in Birmingham, AL. At that time he was also at UAB. Today he is in private practice in Birmingham. We highly recommend both of them. Good luck.

I second Ms. Rice…I would go see ENT and Neurosurgery at the clinic…this is a serious condition and requires professional advice in a timely manner.

I was treated at the Mayo Clinic in Rochester MN for an alveolar rhabdomyosarcoma in my nasal cavity. Dr.Scott Okuno is my oncologist. He is a sarcoma specialist. @ginco1