ANA Discussion Forum
Archive => Archives => Topic started by: michaels on January 08, 2006, 02:51:20 pm
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I was recently diagnosed with AN and presented the 3 treatment options described on this website. I have about a 50+% hearing loss in my left ear. My ENT indicated that it is unlikely after treatment to regain hearing. Has anyone had any experience with this?
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Michaels
Your ENT is correct. While there is certainly the rare occurence where it improves after the treatment, for the most part whatever damage has been done to hearing nerve to this point is permanent. The 8th cranial nerve differs from the others by the tiny hair like fibers that transmit sound to the brain. Once these are damaged either by the compression of the AN or by the treatment process itself, there is no regeneration based on all that I have read. In evaluating treatment options where one still has usable hearing the goal is to try and retain the level before treatment, not improve it. In surgery, the probability of retaining usable hearing is correlated to the size of the AN. An AN less than 1 cm in the hands of a skilled microsurgeon has much higher odds (50-70%) than a 2 cm AN (less than 10-20%) . This would usually involve the middle fossa approach for small ANs and the retro sigmoid approach for larger ones. The translab approach obviously is not part of a hearing preservation discussion since it destroys the ear mechanism. Radiosurgery , on the other hand is not size driven, Hearing preservation rates apply equally to all size tumors. The FSR (staged) protocol is generally thought to have higher rates than the one dose approach, but that is still being studied. Recent studies have shown about 25% of those treated retain pre treatment levels while the other 75% may see a further deterioration on the order of 10-20db. On the rare occassion, a radiosurgery patient will expereince loss of their remaining hearing.
While retaining hearing is an important goal in the decision process, In my opinion, tumor removal/control and facial nerve preservation are higher priorities.
Hope that helps
Mark
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Thanks Mark!
At this point I am fairly fortunate in that my AN tumor is small (7mmx4mm). Part of me is thinking of holding off on the treatment in favor of another MRI in about 6 - 9 months to see how much additional growth has occurred. Can you direct me to other web sites that discuss the treatment considerations? Also, what are your thoughts about using a neurosurgeon vs. the ENT that diagnosed in the event I decide or need to proceed with surgery.
michaels
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My ENT found 50 -65% hearing loss and I had a poor word recognition score. He told me right up front there was little chance of retaining any of the remaining hearing after treatment. He knew right then that my choice was going to be surgery as I could clearly see the 2 cm tumor approaching the brainstem on the MRI.
I asked for a referral and the ENT gave me a referral. I carried my MRI to the (Baylor) surgeons and proceded from that point. The referring ENT is not in the picture.
I had Translab done Dec 15. Any other questions I'd be happy to answer.
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michaels
You're fortunate to have discovered the AN at such a small size. I would tend to agree that a watch and wait approach until another MRI is taken is a reasonable course of action. In terms of who I would select in terms of treatment, your diagnosing ENT is irrelevant at this point in my mind. You need to research physcians that have a tremendous amount of experience with AN's as it is a very specialized condition. When you are researching treatment options my personal preference is to find a neurosurgeon that does both radiosurgery and open surgery on ANs. That is the best way to make sure your reducing some of the bias and out of date information that those who only do one approach or the other may have. At the point you make a decision, then seek out the best and most experienced in that approach. This is probably more critical in a surgery than radiosurgery choice given the former relies heavily on human skill and the latter is much more computerized. This board has many posts from people from all over the country who offer names of surgeons that they were happy with. House Ear in LA is one of the most experienced AN surgery places in the world and has been the choice of many folks with great outcomes. If you choose surgery , then that is a good option. If you go radiosurgery, there are a lot of good centers and part of the decision is understanding what type of machine they use. I was treated with the Cyberknife at Stanford for mine and happen to feel that newer generation machine has some advantages over other technologies.
Some links that might be helpful are
http://www.acousticneuroma.neurosurgery.pitt.edu/or.html
http://www.cksociety.org/PatientInfo/MedicalConditions/acoustic_neuroma.asp#radiosurgery
http://www.anseattle.org/aboutsite.html#anchor2519080
Hope that helps
Mark