Author Topic: Newly diagnosed- need info on Boston ma drs to help my decision  (Read 1103 times)

Catherinerobertson

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I was just recently diagnosed with an AN in my right ear. It showed up on an MRI from 2004 but my PCP never followed up with me about it. In 2004 it was 5mm and now in 2017 it's 9mm. I met with Dr Santos at MA Eye and Ear and he said this was pretty rapid growth and that surgery or radiation were my options. I'm scheduled to meet with Dr Barker at MA Eye and Ear as well to discuss surgery. I'm hoping someone has either used these Dr's or can recommend a Dr in boston. I did like Dr Santos but I'm looking for either a former patients experience with him or with another Dr to ease my mind. Dr Santos said my hearing can't be saved since my tumor is growing both in my inner ear and ear canal even though I only have moderate to severe hearing loss right now.  He discussed the translabrynth surgery as my best option. I'm very symptomatic too (extreme tinnitus all day, vertigo, headaches, eye pain, loss of hearing) and I would like to get the surgery done sooner rather than later as I have three small children at home that need their mom to be feeling well. I know recovery isn't easy but I'd like to get the ball rolling and obviously don't want to rush this decision. Any help would be greatly appreciated!!!
Catherine

ANSydney

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Re: Newly diagnosed- need info on Boston ma drs to help my decision
« Reply #1 on: August 26, 2017, 10:19:49 pm »
4 mm growth in 13 years is considered rapid growth. Really.

Tinnitus is not improved by treatment. How long have you had vertigo. Central compensation should kick in eventually. Do other doctors say that headache is a symptom of such a small tumor? Eye pain is a strange one too I would of thought. As your doctor has said, treatment just makes hearing loss worse.

Catherinerobertson

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Re: Newly diagnosed- need info on Boston ma drs to help my decision
« Reply #2 on: August 27, 2017, 01:58:16 pm »
He said that these are slow growing tumors but that for these tumors that was pretty rapid growth. He said I'm symptomatic because of where the tumor is growing, both in the inner ear and ear canal. I understand that tinnitus will not go away and I'm currently in PT for my balance. I'm really looking for someone who has either been a patient of these dr's- Felipe Santos and Frederick Barker at MA Eye and Ear or for someone to refer me to dr's they had success with in Boston. Thank you
Catherine

Troutbc

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Re: Newly diagnosed- need info on Boston ma drs to help my decision
« Reply #3 on: September 05, 2017, 08:09:46 am »
If you are having surgery in Boston, I would highly recommend Dr. Barker from MGH and Dr. McKenna from MEEI. They have done HUNDREDS of AN surgeries as a team and have been very successful. I had my surgery with them 2 years ago and my outcome was great. I'm living a completely normal life - and my tumor was much bigger, almost 3cm. The care is top notch and they are extremely experienced. Not to mention Dr. Barker's surgical nurse was incredible and calmed me down before going in :) I can't recommend them enough. Obviously a particular outcome cannot be guaranteed, but for me, I wanted the most experienced team I could find.

In my opinion you definitely want the Barker/McKenna team out of Boston.
26 year old female Boston,MA
3cm AN diagnosed 2/13/15. 9.5 hour retrosigmoid surgery in April 2015 with Barker/McKenna

 


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