Author Topic: Questions to Ask at First Otologist Appointment?  (Read 1148 times)

KristenWS

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Questions to Ask at First Otologist Appointment?
« on: July 18, 2018, 06:59:36 pm »
Hello Everyone - First off, thanks to all who responded to my other post in regards to managing symptoms. This group is wonderfully supportive and the feedback has helped to calm me down a bit.  I am still in shock and can't believe that my old life will never be the same but I am determined to try to get back to that place.  I was diagnosed on 7/12 with a 1 CM AN.  I went to the ENT today and was told the following.  I have my first appointment with the otologist tomorrow and want to ask the right questions.  This has been overwhelming and I want to make sure I don't miss anything important.  Thanks in advance for any guidance.

Feedback from ENT:  Permanently have lost 35% of hearing in left ear, good candidate for hearing aid, while he has been away from the latest for 10 years he thinks otologist will recommend wait and watch, surgery is very complicated because they have to lift the rain and all the other complications that go along with (completely losing hearing), facial paralysis can happen over time and if I go off prednisone (2 days left) my symptoms could go back to the severity of my initial severity (still dealing with them but had completely debilitating vertigo, spinning, had to walk with walker, had to lie down most of the time, hearing was actually ok, have terrible tinnitus now), none of this addresses balance, need to go to PT, this could go away for X amount of years and then spike again unannounced at any time and I will eventually lose my hearing entirely.  (none of this reassuring).

So, I want to know if I can resume regular activities - boating, skiing, exercise, driving (have not driven in 3.5 weeks) etc.  Will my terrible sypmtoms come back if off prednisoe?  Will I ever feel myself again?  Is that true about surgery and complete hearing loss, does radiation help at all to shrink, what are the risks with all, if watch and wait, how can we manage these terrible symptoms.....goes on and on.

Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

Cityview

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Re: Questions to Ask at First Otologist Appointment?
« Reply #1 on: July 18, 2018, 07:28:08 pm »
KristinWS
I'm so sorry for your diagnosis and all the stress it causes.
The ANA publishes a list of questions to ask your doctor (it can be found on the ANA website)
Also maybe just write down these questions you just listed here is a good beginning.
Lots of patients in Boston use Mass Eye and Ear and Mass General for doctors.
As someone else mentioned in another thread you can also get free consultations with top doctors in the country for this.
As far as losing hearing permanently, sometimes they can save it through surgery.
As far as watch and wait, those of us on watch and wait, like myself, are comfortable with it because we are not experiencing terrible symptoms. I was told it was good for me because of my tumor's small size and the fact that I feel well.
Doctors may recommend treatment if you are so symptomatic.
balance can improve over time.
There is a lot to consider so take your time.
Remember to be positive even if things seem difficult now.
There are lots of positive stories out there.

5 years ww
small AN

KristenWS

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Re: Questions to Ask at First Otologist Appointment?
« Reply #2 on: July 18, 2018, 08:08:25 pm »
Thanks so much CityView.  I think that I would be able to handle all this much better if my symptoms weren't so bad and then the timing with an upcoming long ago scheduled vacation (stressing over a vacation! but it is a boat vacation).  I think I will feel a bit better after having my otologist appointment tomorrow and then I have a second opinion apt at Mass Eye/Ear in mid August.  Wasn't prepared for this at all.

Thank you for your encouragement.  Hope you continue to be well!
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

CHD63

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Re: Questions to Ask at First Otologist Appointment?
« Reply #3 on: July 18, 2018, 08:18:39 pm »
You might want to take a look at the suggested questions on the anausa.org home page.  See:  https://www.anausa.org/learn-about-acoustic-neuroma/question-to-ask

Let us know how your visit goes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

KristenWS

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Re: Questions to Ask at First Otologist Appointment?
« Reply #4 on: July 18, 2018, 08:29:24 pm »
Just printed them out and signed up for my info packet.  Thank you!
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

 


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