ANA Discussion Forum
General Category => AN Issues => Topic started by: Erikku on April 07, 2016, 08:51:37 pm
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Hi everyone,
I'm asking this for my mom who has been diagnosed with acoustic neuroma and we're weighing the options of going through surgery or gamma knife. Her acoustic neuroma size is not too large. 1.1 X 1.5 cm and we understand the risk that you experience SSD after the surgery.
My question is, for those of you who have gone through the treatment, does the tinnitus go away after the either procedures? Everything else with her is fine other than the fact that the tinnitus has become unbearable distruping sleep. Would appreciate any comments or advice.
Thank you.
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For myself the answer is no. I really haven't heard a story where once someone gets tinnitus it stays with them. It may get better or it may worsen but it always is there. Unfortunately this may be how it will be! :(
Jay
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My tinnitus is constant (it was that way pre-surgery also) & is worse at night when it's quieter. I have found that taking Xanax helps, but I don't want to take it too often - usually 3 nights/week.
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I'm still on the watch and wait but with very loud tinnitus. Just offering that I use a box fan at night and that really makes it a non-issue.....
Good luck!
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Hi Erikku .....
I never had tinnitus until after my first surgery. It started in my AN ear only post-op, but now I have it in both ears. I know there are AN patients who do not have tinnitus and there may be some for whom it went away after treatment. However, I do not know anyone personally.
For me, too much caffeine makes mine much worse, as does too little sleep and too much stress.
When I cannot block it out to go to sleep, I have under pillow flat speakers that are hooked in to a sound machine, playing lovely babbling brook sounds. That helps me focus away from the annoying clanging cymbals. :-\
Best wishes.
Clarice
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Sorry your mom has to join this club.
I had tinnitus before the surgery. After the surgery it is twice as loud and I am now SSD in that ear. I haven't tried cutting back on caffeine to see if it makes a difference. I do sleep with the tv on so I do not notice the tinnitus.
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With her smaller size tumor she may be a candidate for mid fossa and save the hearing. This is no guarantee and the tumor location also plays a part in it. Some drs do not do mid fossa either. One has to find a dr who does this on a frequent basis. Something you may want to check into to. Cheryl R
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Thank you all for the warm hearted replies!
It's an ordeal for all of us to go through this and I appreciate the insights given here. So will have to consult with the doctor at the next appointment to see when can schedule the gamma knife. We were doing the wait and watch approach also, but given that it's not going away or getting smaller and my mom's still fairly young at 60 something, just feel have to do something to arrest the growth.
Will keep this thread posted in case others are interested in the progress.
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With her smaller size tumor she may be a candidate for mid fossa and save the hearing. This is no guarantee and the tumor location also plays a part in it. Some drs do not do mid fossa either. One has to find a dr who does this on a frequent basis. Something you may want to check into to. Cheryl R
Hi Cheryl,
This is the first time I've heard of middle fossa surgery approach, would definitely ask the doctor at next appointment. Thanks.
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Erikku,
Tinnitus results can vary greatly for both radiosurgery and microsurgery. I was told by GK physicians that the goal of GK was to keep the patient from getting worse symptoms, but not to improve them. I was told by microsurgery physicians that tinnitus could go either way, but that many see improvement.
For me personally, I had tinnitus all the time prior to microsurgery that changed sounds and volume, worse when stressed and not as bad when relaxed. I had microsurgery just over 7 weeks ago and the constant tinnitus is completely gone. However, it was replaced by a low volume squeak in my AN ear either when I speak or have a louder sound coming in my non-AN ear. So, for me, the pre-surgical tinnitus was replaced by a much more tolerable form of tinnitus post-surgery. Actually, I don't hear my current tinnitus unless I try to pay attention to it.
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For the vast majority of people who suffer with tinnitus (for at least several months), I believe for the most part that person's tinnitus will become a part of them (for better or worse) for a lifetime. You may want to check out the American Tinnitus Association website/forum.
If you still have hearing in the affected ear, the WIDEX hearing aid with the "Zen" feature has been most beneficial for my tinnitus. I believe this product was discussed in the latest ANA newsletter.
A few radiation doctors may claim tinnitus will likely stay the same or increase after treatment, while other world renowned doctors will say just the opposite (tinnitus may decrease). It all depends on who you consult with, and can become very frustrating having to deal with all the conflicting information in your time of anxiety.
Every situation is unique regarding tumor location, size, volume, etc.
My primary care doctor didn't even know that if you "cut the hearing nerve" to intentionally "go deaf" the tinnitus will still likely persist. Finding expert care can be difficult. Xanax can help for sleeping.
My audiologist claims that the vast majority of tinnitus sufferers will have tinnitus for a lifetime as there is no cure. Many have attempted "Oxygen tank" therapy for several weeks. The oxygen treatment may costs close to $6000 USD and is unproven to help those of us who have been diagnosed with an Acoustic Neuroma tumor causing the hearing loss.
At the end of the day, it's good to develop expert coping skills. It can be difficult to get accurate and unbiased info regarding tinnitus. Especially info that isn't sugar-coated. I'd rather have the truth than false hope.