Author Topic: Post Surgery possible recurrent issue questions  (Read 2035 times)

Bp15

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Post Surgery possible recurrent issue questions
« on: May 14, 2022, 07:41:11 am »
Hi,

I had AN surgery about 15 years ago.  My surgery has rendered my left ear to be totally deaf due to the surgery option recommended to me at that time. After 6 months, then there was CF fluid leaking into my inner ear.  Going back to see the doctor who did my surgery but being stalled after a few appointment and the reason might be obvious that not a lot can be done without having to open it up again.  Since then, I have started to get used to the issues which bothered me at first physically and mentally, however, after a few years, I got used to it and moved on.

However, in the past 2-3 months, that side started to get some itchiness from inside and occasionally some twitches of pain (not really painful though), then the pain started to occur more often.  There is some slight stuffiness and strange sensation on that side of the face, headache, tinnitus starts to get louder and applied with loud noise.  I am trying to get appointment with either Dr. Slattery or Dr. Lekovic at House Ear for consultation but won’t be able to see them for another month.  I’m not sure at this point if this issue that I’m experiencing is due to more leakage or the CFS fluid or the tumor now is growing back on the facial nerve. 

I’ve read that it is more often that tumor grows back on the facial nerve after 10-20 years time frame. 

Let me know what your thoughts are and which Doctor at House I should see for this kind of symptoms.

Thank you.

donjehle

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Re: Post Surgery possible recurrent issue questions
« Reply #1 on: May 14, 2022, 12:02:20 pm »
Hi Bp15!

First of all, I want to say how sorry I am that you are having to go through all of this 15 years after your initial surgery.  I cannot imagine what that is like when it seems like you have gotten over the worst of it and have learned to live with the challenges AN brings.

Secondly, I want to thank you for sharing your story with the AN Community.  Even if we are not going through the exact same thing at the moment, sharing your story enriches the Community and it can be especially helpful to someone else who is going through something similar.  So, thank you for posting on the forums!

Lastly, I have no idea which doctor at House you should see.  And even if I did, it is best to let the specialists help you determine that.  People on the forums often give good encouragement and helpful advice, but a medical opinion is best left up to the experts.  And whether what you are experiencing is more leakage or the tumor growing back is not something we can really diagnose on the forums.  I just hate that you may have to wait another month before you are able to see a specialist.

Please update us on what you find out.  We will be very interested in what you learn.  I wish you the very best on your continued journey!
Don

Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Bp15

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Re: Post Surgery possible recurrent issue questions
« Reply #2 on: May 14, 2022, 05:12:21 pm »
Hi Bp15!

First of all, I want to say how sorry I am that you are having to go through all of this 15 years after your initial surgery.  I cannot imagine what that is like when it seems like you have gotten over the worst of it and have learned to live with the challenges AN brings.

Secondly, I want to thank you for sharing your story with the AN Community.  Even if we are not going through the exact same thing at the moment, sharing your story enriches the Community and it can be especially helpful to someone else who is going through something similar.  So, thank you for posting on the forums!

Lastly, I have no idea which doctor at House you should see.  And even if I did, it is best to let the specialists help you determine that.  People on the forums often give good encouragement and helpful advice, but a medical opinion is best left up to the experts.  And whether what you are experiencing is more leakage or the tumor growing back is not something we can really diagnose on the forums.  I just hate that you may have to wait another month before you are able to see a specialist.

Please update us on what you find out.  We will be very interested in what you learn.  I wish you the very best on your continued journey!
Don

Don,
Thanks for responding. Will update this forum once I get the MRI and see “a” specialist.