ANA Discussion Forum
General Category => AN Issues => Topic started by: TJ on May 13, 2010, 04:43:43 pm
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This group has so much information, here is my question. Does anyone have an data on hearling loss due to CK? I have been told that as many as 50-60% of those that have CK lose hearing from the radiation exposure. I haven't been able to find any studies or statistics on this. I have lost most of my hearing in my left ear and the AN is on the right side so suegery is out. The doctor wants to wait, but I am having symptoms and I want to get it done.
I am just looking for information so that I can be informed and make the right decision for me.
TJ
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Under certain conditions, if a intact acoustic nerve can be saved, then you would be a candidate for a cochlear implant on the AN side. This was going to be my case 2 yrs ago but my hearing improved past surgery which is not a usual happening. I was going to be having a CI a month later but was not needed. What size is your AN as if tumor is of a smaller nature,then a mid fossa may save the hearing. Your tumor size and locatiopn will play apart in this.
Cheryl R
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TJ, is there any way you can see the drs at House in LA? In reading your history there might be a chance of saving the hearing and they say they have a approx 75 success rate of saving the hearing with mid fossa and smaller tumors. They are at the AN sympsoiums every other year and gave good presentations. Every persons situation is diiferent but might be worth seeing them or sending your MRI and see what they think. Cheryl R
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Thank both of you for your responses. To answer your questions my AN is currently still fairly small at 7 mm and is resting on the cochlear but is causing all kinds of problems. I am being seen by Dr. Jackler the head of Stanford so I am very comfortable with that. Because of my hearing loss in the left ear and the AN is on my right side he does not want to do surgery.
Again anyone with stats on hearing loss after radiation would be appreciated.
Thanks
TJ
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This group has so much information, here is my question. Does anyone have an data on hearling loss due to CK? I have been told that as many as 50-60% of those that have CK lose hearing from the radiation exposure. I haven't been able to find any studies or statistics on this. I have lost most of my hearing in my left ear and the AN is on the right side so suegery is out. The doctor wants to wait, but I am having symptoms and I want to get it done.
I am just looking for information so that I can be informed and make the right decision for me.
TJ
I guess then what you are asking is are the stats you were told, '50-60% of those that have CK lose hearing' is correct. I can't verify that but wonder if you doubt this statistic why don't you ask the person who gave it to you, your doctor, where they got that from. At least then you have a starting point.
Neal
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It probably depends on where your AN is located. Even if it is small, if it is "intracanalicular," near the cochlea, my understanding is that there is a much higher risk of radiation damage to your hearing. My AN is/was both in and out of the canal. My doc said they would plan my CK sessions so that the cochlea and "labyrinthine structures" could be "spared."
I'm two months out from my CK treatments, and my audiometry last month showed my hearing has actually improved (steroids?). But I have a long ways to go yet before I know the outcome. I know that Phyl had CK, and she did not lose any hearing. You could ask the question on www.cyberknife.com, but you will probably get the same answer as your doc at Stanford. Of course, Stanford has some of the most knowledgeable, experienced CK docs when it comes to ANs, so they should know best.
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Again, thanks to those that responded. I do not doubt what I was told, I guess I just would like to see if there are any reports on this to confirm it.
TJ
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I would love to see some type of real report also. My doc told me that everyone that has radiation will go deaf in that ear within 5 to 6 years. To some degree, I have to believe what he told me, but there is nothing to back that up. I am NF2, and my acoustic nerve was saved in surgery for future use if I ever need a CI, so I did not consider radiation...in other words, he was not trying to talk me out of radiation...it was just part of a conversation. There has to be some hard figures on this topic.