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Forum Acoustic Neuroma brain tumour (AN)

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 Post subject: Discomfort after surgery
PostPosted: Wed Apr 13, 2016 8:55 am 

Joined: Tue Apr 12, 2016 8:52 am
Posts: 21
Location: California
Country: USA
Gender: female
Year of birth: 1955
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Subri: as a nurse, I can tell you that everyone experiences and interprets pain differently. As an AN patient, I am interested in how each of you has experienced surgery and/or radiation. Be descriptive! Where was pain located? What did it feel like? How did your healthcare team take care of you? So forth. Writing about pain can help alleviate in the sense you are sharing with others. It lifts the burden somehow. Looking forward to hearing from you!

:) SUBRI IGAN forum Moderator and post resection of left acoustic neuroma with permanent deafness left ear

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PostPosted: Tue Feb 13, 2018 11:23 am 

Joined: Thu Feb 18, 2016 3:57 pm
Posts: 18
Location: 6330 Cham - Switzerland
Disease picture:
Dear Forum Members,

This is an extract of a conversation about the discomfort after surgery. Please feel invited to tell us about your feelings after surgery. Just the patients themselves can tell best!

"In my search for information concerning my actual situation and difficulties I found the link to this page. I must say I'm rather astonished no further people affected by an AN seem to be present in this english forum. I have benefitted soooo much from the german forum, noone tells you about the (very very different ) life you're to expect after the operation (or radiation or..)"

"Right! The only way to obtain accurate symptom information is from the patients themselves."

"and so few doctors or therapists seem to know anything like enough about either symptoms, medical treatment or therapy afterwards."

"Even though I questioned the surgeons extensively, no one could adequately prepare me for the changes brought about by the surgery. I did not require radiation. Unilateral hearing changes the "color" of sound, the ability to find direction of sound, the appreciation of music and even more. I lost taste in half of my tongue. Fortunately, I had NO facial weakness or palsy, but there is a slight difference in symmetry of the face."

"I hope you are coping somehow dealing with deafness, hopefully no facial palsy (or do you call it "Bell's Palsy"?), hopefully no dizziness, and hopefully no further symptoms or illnesses."

"I only lose my balance in the dark! It is weird, but common I believe."

"For me, with only a slight facial palsy, dizziness is mainly a problem in the dark."

"ME TOO!! The worst thing is definitely the deafness and resulting concentration difficulties. Affects social life and work so much. I agree entirely. I don't like going to restaurants any longer as I can no longer hear conversation. Plus, I have tinnitus which worsens when there is a lot of loud ambient sound. It gives me headaches."

Thank you so much for writing! I really appreciate your comments and concerns.

gfstiftung, IGAN Administrator

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