ANA Discussion Forum
Useful Information => Physicians => Topic started by: KristenWS on July 17, 2018, 12:39:30 pm
Greetings -I am newly diagnosed with a 1 cm AN (7/12/18) with symptoms starting on 6/24/18. My ENT has arranged for me to see an otologist this week to discuss treatment and to manage symptoms (my symptoms are awful, derailing quality of life). I live north of Boston and the first otologist is up my way. I feel like Boston docs might be the best and always good to have a second opinion. Can anyone recommend and share their experiences? Thanks in advance. I am very scared and overwhelmed with this diagnosis but have already found this forum to be helpful. Thank you.
Welcome Kristen! I am 50, I was diagnosed this March, 12mm, and discovered it an immediate onset of hearing loss/tinnitus, went to doctor, steroids, etc. and when didn't get better sent me to ENT who did MRI and found it. Makes sense these past couple of years of balance issues, foggy head, etc. For me, I am at perfect peace with the tumor, with the tinnitus, etc. my faith helps that tremendously. When doctor told me I was like ok, we are going down this path Lord, so now what. I am in South Carolina and have gotten opinions from Duke (Dr. Cunningham) and Dr. Friedman. All you have to do is mail them your records. They give free second opinions. I would go to your local Otolarynologist and then just contact either of these and they are GREAT. Both docs got my records and gave me phone calls to discuss any questions. I have had several tests done because I do still have my hearing at about 85%. I will have another mri aug 16 and the doctor said if the tumor has not grown then for me to just enjoy my hearing for as long as I can and keep up with yearly mris and seek treatment only if it shows it is growing. I still run, exercise, bike ride and are heading in 2 weeks to climb a 14,000 ft mountain in Colorado. I just work with my symptoms, and I accept them - I don't like them but it is my new normal. I wish you the best of luck!!!!
I had surgery for my AN in April 2016 in Boston.
I worked with doctors from Massachusetts General and MA Eye and Ear Institute.
If you are near Boston, I recommend getting an opinion from those places.
Kristen - I had been diagnosed in Colorado and underwent a failed Gamma Knife procedure at UPMC four years ago. Last year my neurologist referred me to Dr. Carl Heilman at Tufts Medical Center in Boston. I underwent surgery last month with Dr. Heilman and Dr. Jonathon Sillman (otolaryngologist at Tufts). While I cannot comment on them from the early diagnosis stage, I would highly recommend them if surgery is in your future. My recovery has been remarkable, and I attribute much of that to their experience. Sue