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Is there any chance of saving my hearing?
Ssp
Posted: Thursday, December 12, 2013 3:41 PM
Joined: 12/12/2013
Posts: 2


Hi everyone,
 I am 39yrs old  recently found out that I have AN (4mm x 6.8mm x 4.2mm) in my right ear.My symptoms so far some hearing loss,tinnitus, mild ear pain, occasional little tingling right side of the face.I lost some hearing I don't know technically how much but  I can still hear the phone in my right ear  but its low.So I believe I still have some hearing left in that ear(based on self testing <img src=" title="Smiley" class="smiley">)  But my doctors decided that I already lost usable hearing which is hard to believe since I can still hear the phone.So they suggested watch and wait for , now with 6 months followup MRI,because there is nothing to lose.If the tumor grows or my symptoms gets worse they recommended CK Radio surgery due  to my personal situation.So we focused on Radio surgery and the Radio surgeon says that its best to wait until the tumor grows little bit more that I still have a small one.He says that even with the Radiation I will totally lose my hearing  <img src=" title="Embarrassed" class="smiley"> and I might get other side effects like facial paralysis,loud tinnitus.He says that if the tumor grows there is a chance of protecting  my facial nerve from getting damaged by radiation.Because the bigger tumor covers more area so the rays splatter less and this way there is less damage to other things.Forget about the hearing because I am already deaf or going to be deaf that side(according to him).

My apologies for the long message but I need help. Before meeting the doctors I was under impression that the sooner,and the smaller the tumor there is a better chance of preserving hearing and less side effects.Also I thought CK is the better option to save the remaining hearing.I know that there is no guaranty that I will not lose rest of my hearing I am prepared for that.But what I am trying here is If there is chance of preserving why don't we try it? right now I am on W&W but still trying to find some answers.
Thanks for your patience and hope I get some help to decide.
Thanks and regards
Ssp

radsrus
Posted: Saturday, December 14, 2013 7:48 AM
Joined: 10/10/2008
Posts: 4435


The best data shows about 65% hearing preservation with SRS, and it is not yet clear whether fractionation improves on results. Side effects are generally mild, but can include balance issues and hearing loss. It is uncommon to get tinnitus if you don't have it already, and facial paralysis is very rare. I have never seen it in several hundred patients we have treated with Gamma Knife and CyberKnife. That does not mean it is impossible, just rare. We generally do advise waiting 6 months from diagnosis and repeating the MRI to see if there is growth. If there is growth, there is no reason to hold off on treatment. You just invite further neurologic damage in that strategy. Either you misunderstood your doctor, or he is seriously misinformed. You do not gain the ability to better protect normal structures by waiting until the tumor is larger. In fact, just the opposite. I think you should talk to the doctor again. If you misunderstood, then he should get an opportunity to better explain himself. If he seriously believes that you get better sparing of normal structures by waiting until the tumor is larger, and if he really thinks that deafness is inevitable with treatment, then I think you should seriously consider getting another doctor who is better informed.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


sunmi
Posted: Thursday, April 28, 2016 11:57 PM
Joined: 4/28/2016
Posts: 4




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mycsgokeys
Posted: Wednesday, June 22, 2016 1:25 AM
Joined: 6/22/2016
Posts: 1


Actively cooperate with the doctor's treatment. Get well soon.


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