ANA Discussion Forum
AN Community => AN Community => Topic started by: richard on October 29, 2006, 10:25:27 pm
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About a month ago I was diagnosed with a 1 cm acoustic neuroma on the left side. My symptoms are tinnitus and about a 25% loss in hearing. My doctor recommends translab which is the safest aproach but will take 100% of my hearing. From surfing web sites it seems hearing conservation is not realistic no matter what the approach.
Is a different aproach worth the risk? Is the BAHA worth it. My other ear is at 100%. I am 48 years old.
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Hi Richard -
I had a 3 cm removed by the translab method in 2001 at the House Ear Clinic. I also had about a 25% hearing loss. Because of the research I did prior to surgery and speaking to my doctors, the other surgery options had side effects that made me think that I would rather choose the safest route even knowing I would end up with 100% hearing loss. Translab is the most direct entry with the easiest access to the tumor. Good luck!ÂÂ
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Richard, Choose the best doctor you can get to. Yes, I was told translab was safest and most predictible. Yes, the BAHA is worth it, especially with so much of your lifetime of work and activity remaining. I have friends who had the BAHA bone implant done at the same time as the tumor surgery. This is a good idea, I have been told. The quality and volume you get from the BAHA is close to real ear sound because the implant is right in the bare bone. I tried the BAHA test band after my surgery. Great sound for a dead ear! I settled for a TransEar. Didn't want BAHA surgery. Too, scared to go back into anesthetic. Age factors into my fears, too. You'll do fine. I have no bad side effects from my Translab.
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You Know 1 cm is quite small (relatively) and you do have some hearing that side
there are alternatives both surgically and radiation that may be able to
save some/most of the remaining hearing (70-90% probability)
It depends a bit on your own views regarding the possible options
- my suggestion is you obtain a couple of alternative medical opinions
at 1cm you have, maybe, 6mths or more to decide.
In the end its what you think is best for you.
Best Regards
Tony
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Hi Richard...
I agree with Tony... at 1cm your AN is relatively small and your MRI scan will have indicated if you are suitable for alternative and less invasive radiosurgery. You will note my personal AN history from my signature content and I would certainly recommend 'wait and watch' until such time that you HAVE to make the ultimate decision.
Best Regards
Derek
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Thank You for your responces. I hesitate to wait (oxymoron?) because the tinnitus is getting louder and I imagine the tumor is gettinr closer to the facial nerve. I love music. What is listening to music like with the BAHA? If I go translab will the tinnitus be even louder?
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Thank You for your responces. I hesitate to wait (oxymoron?) because the tinnitus is getting louder and I imagine the tumor is gettinr closer to the facial nerve. I love music. What is listening to music like with the BAHA? If I go translab will the tinnitus be even louder?
The tinnitus is such an individual thing, it's hard to say if it will be louder for you. Personally, the quality of mine changed but not the volume (except for a couple days immediately post-op). It's not better or worse now - just different. It doesn't vary anymore - I used to get all sorts of different sounds in my tinnitus and now it's just a constant drone. Most of the time I can tune it out without difficulty.
Good luck!
Katie
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Richard......Yes to what Katie said. It never goes away and gets louder when you shift your eyes left to right or up and down. Most of the time it's easy to tune out though because it is so constant.
As far as music is concerned: I've been making a living playing it for the past 20 years. I love listening as I always have. It's just that, you don't hear in stereo any longer. No more left and right headphones!
Hearing sounds can be tricky because so much of what we hear is directional. Something may be coming at you on the left but you'll only hear it residually on the right side because the left side is a total blank - except for the tinnitus.
Paul
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My surgeon went with the retrosigmoid sub-occipital approach, to try and preserve my usable hearing. The doctor and everything I read indicated a 50/50 shot at preserving hearing with either surgery or radiosurgery.
I lost the coin toss, and am left-side deaf after the surgery.
Wayne
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I urge you to get as much information as you can. If you can find a support group in your area, go to a meeting. If I had gone to a support meeting before surgery and/or had researched moreâ€â€talked to more peopleâ€â€I probably would not have had the translab surgery in April 2006. I would have chosen the "Wait and Watch" alternative. My tumor was 7 mm, very small, and I had few symptoms. Now, I have complete hearing loss in the right ear, constant dizziness when walking, can't taste food, and have a constant "s-s-s-s-s" sound in my AN ear. Because every tumor is different in size and place, the residual effects after treatment differ widely from one person to another. However, I am back to work and drive most anywhere I want to go.
I have heard wonderful things about House Ear Clinic in Los Angeles, where Dr. Brackman does surgery. I did not go there but wish I had considered them. Do a search on this forum for "Brackman".
Good luck in your search -- Dee
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Hi Richard
When I was doing my research about treatmets for my 2.2cm AN one of my main considerations was to save what
hearing I had left in my AN ear. I was reallly annoyed when a surgeon who was doing a hard sell on translab as the only way to go in my case said that my hearing really was not worth saving anyway . I begged to differ and after a lot more research I managed to get my GP to get an appointment for me to see if I could have GK which I finally had here in UK in Sheffield 18 months ago
and have no regrets so far. There has not been any changes in my hearing and I am able to enjoy listening to music in stereo and going to the theatre to see and hear musicals almost the same as before my AN . The tinnitus I cannot do anything about but somehow I manage to ignore it and just get on with life as usual . Of course this was the right thing for me do at the time and you must make your own decision about what treatment is the best for you but because your AN is fairly small you do have time on your side.
Best regards Katarina
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I am curious why anyone would 'wait and see'. My tumor was quite advanced with strong symptoms including facial numbness and blackouts so I obviously never considered that as an option. But why would anyone else want to wait for more complications before addressing it? It isn't going to go away or get smaller? I am not judging, just really interested in the logic behind such a decision?
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I agree sherry6. Mine was originally diagnosed as "your getting old" about a year ago. It was just ringing then, now at times its more like a jet engine (small exageration). Also, my ENT told me 7mm, when I read the report myself it said 9mm, and when I saw the surgery guy he said 1-1.2cm. All from one MRI.
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Thanks, Bruce! Again, I hope you know I am not making any judgement, I agree that everyone has to make their own choices regarding their health. I was truly curious what was behind that decision. I appreciate you sharing your view!
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Thanks, Bruce! Again, I hope you know I am not making any judgement, I agree that everyone has to make their own choices regarding their health. I was truly curious what was behind that decision. I appreciate you sharing your view!
Hi Sherry..
I'm in full agreement with Bruce on this one, being almost 5 years in 'wait and watch' mode I consider myself to be very fortunate and indeed lucky! to be able to lead a full and very active life in my recently acquired retirement status and I have no desire to play 'Russian Roulette.'
'Wait and watch' is a medically approved form of treatment option and is perfectly safe when subjected to regular MRI scan monitoring and acting upon professional medical advice and guidance.
I fully accept that irrespective of whether I (hopefully) remain indefinately in 'wait and watch' mode or whether I require microsurgery or radiosurgery at a future date, I will continue to have regular MRI scans for the rest of my life just in case the 'little bugger' decides to play awkward but I presently remain a very happy 'wait and watcher'.
Best Regards
Derek
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Hi Richard,
I had a small AN and was on the wait and watch mode for 5 years. At that time the MRI showed my AN was growing. It was then that I got serious about researching my options. Because my tumor was still small, I was able to have Middle Fossa approach which saved 85% of my hearing. I was 46 at the time. I decided to get it over with and not wait till I got older because I personally felt that I could recover faster. I was back to work in 8 weeks. I must admit that my tinnitus is constant after surgery (it wasn't before surgery). But it is not unbearable and I really only notice it when I am in a quiet place. I was very pleased with my outcome. House Ear Clinic will give you a free consultation if you send them your films. I used Brackmann and Hitselberger, they are wonderful doctors. Any questions, please send me a personal email. I wish you the best on your AN journey. We are here to help in any way we can. Ann
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Hi Richard and welcome.... great replies you are receiving here and as many know, I publically went through this process of "how do you choose?" or "what is best?". It's a very difficult question to try to answer and in my opinion, many here on this thread have touched on the important points.
Like you, I was in wait and watch mode... for a year. Mine progressively grew, so my decision making process had to occur soon. For me (and as many here note), I tried to take the following into consideration:
1. My lifestyle
2. My symptoms at time of the decision making process
3. Do I want to cut it out of my head and be rid of it or....can I handle the thought of it dying in my head.
4. Treatment teams
5. Different surgical approaches
6. Different radio-surgery approaches/stats/accurracy.
It really does boil down to personal choice.
Many here know that I lost a sister to a malignant brain tumor. My family, obviously, was rather thrown when they found out there was a 2nd sibling with a brain tumor, although benign and treatable. My family's attitude was "if it don't belong, cut it out". For me, my attitude was "well, if plan A doesn't work, I know I can go to plan B" and "I'd rather try non-invasive first and if it fails, then, I can go invasive".
I had my reasons for having radio-surgery done that worked best for me. In my opinion, if you ask yourself the questions noted above and sit down and really think about these questions and what is the comfort level for you, then your decision should come fairly easy to you.
Regardless of what you decide, know that that you never question your decision, have faith in your treatment team and treatment approach... and know that all of us cheer you on.
Hang in there and welcome.
Phyl
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Hi Richard,
I had the Translab done (i had a 1.75cm) and my reasoning was to preserve my facial nerve. The loss of the balance nerve you'll overcome with practice, the loss of hearing is doable (I'm still adjusting to it, but in most cases I hear perfectly well with the good ear, as a matter of fact my good side has gotten sharper). Restaurants and big cavernous department stores and malls will cause some frustrations at first. Make sure who ever you are with is on your good side. The problems that can occur from the loss of facial nerve, paralysis, etc., is mind boggling, consequently, my vanity and my desire not to have to mess with the problem, led me to decide to sacrifice what hearing I had (about 60%) and then get on with my life.
good luck on your decision.
Road Trip