ANA Discussion Forum
General Category => AN Issues => Topic started by: macehall on June 24, 2019, 06:06:59 pm
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Hello, everyone, I am new to this forum. In April, I was diagnosed with a 2.4 cm AN. Since, I have talked to Duke and House. Both recommend translab. Upon a friend's recommendation, I talked to a doctor at UW named Laligam Sehkar who recommends RS and says I have a 50% chance of hearing preservation. Then, I consulted with a doctor at Johns Hopkins who says he's do RS as well but chances of preserving hearing is only 10 - 20 %. Any advice? Thanks, Mace
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I'm not a doctor, but have done lots of research. Assuming the 2.4 cm dimension has been done correctly, my "summary" would be a 25% or less chance of preserving hearing. Hearing is not the big issue. Not damaging the facial nerve is the big issue. What chance were you given of no facial nerve deficit?
Do you know your hearing test results - PTA and word recognition?
There's no rush. Have you thought about waiting 6 months from diagnosis to see if the tumor is still growing. The clear majority have already stopped growing before diagnosis.
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HI Mace,
It is important to know that every patient is different and it may be hard for your doctors to tell you exactly what your chances of hearing preservation are. No matter whether you have treatment or not, and no matter what type of treatment, acoustic neuroma patients have a higher likelihood of losing their hearing.
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Loss of hearing can be dealt with much easier than facial paralysis.
Please take your time deciding what to do and make sure you have a surgeon with lots of experience removing AN's.
I have no idea how old you are, but have you also looked into Gamma Knife?
With 2.4cm tumor, you could certainly have Gamma Knife.
Best of luck.
Cathie.
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Thanks for your replies. I am 52 year old mother of 3 teens. I still have conversational hearing in my right ear. Deeper sounds are easier to hear than high pitched sounds.
I first went to Duke, then House, who both recommended translab with only a 2% chance of facial paralysis but 100% hearing loss. Subsequently, I have met with John's Hopkins and Harborview Medical who both recommend RS in an effort to preserve hearing. They both quoted a 2% FN risk. John's Hopkins gave me a 10-20% chance of preserving my hearing. Lalogam Sekhar at Harborview said 50-60% because the tumor isn't in my ear canal.
I have an August 6 surgery date with him.. I hope I am doing the right thing. He's done over 700 of these surgeries and I know someone who used him 17 years ago who had hearing and FN preservation. I'm in Atlanta and so traveling to Seattle is a complete pain. Hopefully, it will be worth it.
I am madly concerned thawith all these consultations, I will have waited for 5 months to have the surgery. I have started having sharp pain in my right ear and the annoying ringing is worse!!! But every doctor has told me that I do not need to be in a rush.
Thanks! Mace Hall
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Hi Mace...
I had EIGHT consults.. all but one wanted to do translab...the other said he could do RS and POSSIBLY save my hearing. for me most important outcome was
1...save my life
2.....save my face
3....save my hearing.
but what ultimately helped me choose was my gut feeling about how the surgeon made me feel...I knew all of them had done hundreds of these surgeries. I went with the doctor who made me feel like I was important.
Best of luck!
(p.s. two out of three ain't bad! :) )
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I'm glad you found someone with an acceptable solution for you. However, I would advise against any delay if you're concerned about your hearing and you already know that you're going to have surgery. From my own experience, and from reading through this forum and others, it seems like no one is going to die overnight from an AN, but you may experience sudden loss of hearing or facial nerve issues while waiting. I had some facial paralysis last November, had my MRI in March and lost the last of my hearing about a week after. I had my surgery scheduled for June 13th, and experienced a worsening of the facial nerve issues two weeks prior to the op. I'm not saying to panic, but don't let anyone reschedule and delay because you're not an emergency, there may be no rush, but there's no sense in delaying longer the it takes for you to get your house in order and the doctors to find a slot on their schedule.
Good luck!