Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

Posted by Tracy Lynne Daley @tracylynnedaley72, Jul 23, 2015

My name is Tracy Daley. I live in Omaha, Nebraska. My diagnosis is a jumbled mess that I am sorting out right now. Can anyone tell me if anyone in this support group has been diagnosed and/or treated for acoustic neuroma, a benign tumor affecting the acoustic nerve, which is the eighth cranial nerve in your brain? This nerve is connected to your ear. These tumors initially affect a person’s balance and hearing and then other symptoms may appear. This is a very rare tumor and one out of 100,000 people and 8-9% of the intracranial tumors. If no one has heard of this tumor, I understand.

Hey – Jennifer here. I was diagnosed last week with a 2mm (very small) AN. I happen to work at Cedars-Sinai in Los Angeles so I was able to meet with the Chair of Neurosurgery here yesterday (Keith Black). He highly recommended that we monitor it for the next 6-9 months so I will be getting a baseline hearing test soon and then another in 6 months (my call on not waiting 9) as well as a 2nd MRI at that time. He said the risks of surgery at this point outweigh the benefits. I haven't noticed any hearing loss and only got the MRI because I noticed that I was getting vertigo in specific positions and my husband refused to go to Palm Springs with me unless I found out why (he's kind of a hypochondriac which usually annoys me but paid off for me this time!). Anyway, I'm just not one to worry about things so that's where I am now. I'm just not worried. Should I be? it sounds like hearing loss is almost a definite thing whether I get surgery, radiation, or do nothing (pardon the pun!). Has anyone every had an AN without losing their hearing? Or without experiencing tinnitus or extreme vertigo? It looks like Steve (@sprucey1) is about the only person around here who has come out of this thing just fine. I have found ways to work around the moderate vertigo I have been experiencing by just not putting myself in those specific positions. I am 48, very active, and am otherwise healthy (though I've ALWAYS been super clumsy). I just want to make sure I'm being proactive enough. I would really hate to risk having my active lifestyle altered in any way at all. Any feedback is greatly appreciated!

I have been losing hearing in my right ear very gradually over many years. When I mentioned it to my ENT doctor as I was getting two thyroid nodules examined and needle biopsied (which were small and benign), he had me take a hearing test, then sent me for my first MRI because of the auditory test result pattern. I have a small acoustic neuroma 5 x 11 mm. That was about 3 or 4 years ago. Almost a year later, I had another brain MRI, again without and with shot and was told it had not grown and I could wait 2 years before getting a 3rd MRI and thyroid sonogram, which are due this spring. I do not, so far, have other really noticeable problems, except ringing and clicking in my ear and, maybe, sometimes a few balance problems when turning or bending fast or walking in the dark. If the acoustic neuroma causes worse problems and grows too large, I will have to have radiation. These days, the choices are observation, surgery, or radiation. Since I am now 71, the ENT thinks observation of the small tumor is best, and then radiation, if needed. Also, I have been dealing with annoying irritable bowel and refux for several years, too. Hopefully, by the the time I need the AN treated, better treatments will become available. Right now, I am hoping it does not grow. Good luck with your AN journey! Everyone has different circumstances. Hope my story helps you decide what to do and helps ease your mind somewhat. .

@kkkk

I have been losing hearing in my right ear very gradually over many years. When I mentioned it to my ENT doctor as I was getting two thyroid nodules examined and needle biopsied (which were small and benign), he had me take a hearing test, then sent me for my first MRI because of the auditory test result pattern. I have a small acoustic neuroma 5 x 11 mm. That was about 3 or 4 years ago. Almost a year later, I had another brain MRI, again without and with shot and was told it had not grown and I could wait 2 years before getting a 3rd MRI and thyroid sonogram, which are due this spring. I do not, so far, have other really noticeable problems, except ringing and clicking in my ear and, maybe, sometimes a few balance problems when turning or bending fast or walking in the dark. If the acoustic neuroma causes worse problems and grows too large, I will have to have radiation. These days, the choices are observation, surgery, or radiation. Since I am now 71, the ENT thinks observation of the small tumor is best, and then radiation, if needed. Also, I have been dealing with annoying irritable bowel and refux for several years, too. Hopefully, by the the time I need the AN treated, better treatments will become available. Right now, I am hoping it does not grow. Good luck with your AN journey! Everyone has different circumstances. Hope my story helps you decide what to do and helps ease your mind somewhat. .

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@kkkk – thanks for sharing that. I definitely feel more comfortable knowing that others are simply monitoring rather than treating. I'm not typically a wait and watch kind of person so that was difficult for me to get behind. Sorry about the other issues you are having to deal with. My group has done quite a bit of GI research dealing with IBS and GERD over the years so I know how stressful those things can be for patients. Best of luck to you!

Yes I just had surgery to remove my acoustic neuroma and wish I had gone to Mayo Clinic Rochester from the beginning. They would have preserved the hearing I still had. To everyone of you Reach out to Mayo Clinic in Rochester Minnesota. They have something brand new. It is amazing! You can preserve your hearing and that is their goal their. They do more of these operations than anyone and everyone is try to come up to where they are at currently. Write to Dr. Matthew Carlson. Tell him you want to get rid of the tumor now why it’s small and preserve your hearing. If you wait you face balance and cross over hearing aids. You want a company that sells the FM boot or your active life’s become inactive. The worst part is when you ask people to please repeat something for the 3rd time and the say it wasn’t important. It was to you! That’s why you want it repeated. You ask people to slow down and speak clearer for you and they don’t. You set up classes for your family to learn how to include you with your hearing loss but they never come. They think it’s just your problem but now everyone needs to take in to account you can’t hear. I was down to 45% hearing loss out of my good ear. Insurance companies won’t pay for a cochlear nerve implant unless you are below 50% in your hearing ear. So you are smart to remove the tumor before you lose your hearing. I lost mine in 6 months. Anyone else

@kkkk

I have been losing hearing in my right ear very gradually over many years. When I mentioned it to my ENT doctor as I was getting two thyroid nodules examined and needle biopsied (which were small and benign), he had me take a hearing test, then sent me for my first MRI because of the auditory test result pattern. I have a small acoustic neuroma 5 x 11 mm. That was about 3 or 4 years ago. Almost a year later, I had another brain MRI, again without and with shot and was told it had not grown and I could wait 2 years before getting a 3rd MRI and thyroid sonogram, which are due this spring. I do not, so far, have other really noticeable problems, except ringing and clicking in my ear and, maybe, sometimes a few balance problems when turning or bending fast or walking in the dark. If the acoustic neuroma causes worse problems and grows too large, I will have to have radiation. These days, the choices are observation, surgery, or radiation. Since I am now 71, the ENT thinks observation of the small tumor is best, and then radiation, if needed. Also, I have been dealing with annoying irritable bowel and refux for several years, too. Hopefully, by the the time I need the AN treated, better treatments will become available. Right now, I am hoping it does not grow. Good luck with your AN journey! Everyone has different circumstances. Hope my story helps you decide what to do and helps ease your mind somewhat. .

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@kkkk your thyroid nodules are caused from your acoustic neuroma. I know because mine caused hypothyroidism. It’s common. It also causes neuropathy. The longer you have it the more problems you could have. As for what they are doing Mayo Clinic in Rochester Minnesota is doing some ground breaking work that’s amazing. It’s worth going and talk to them. Do you have a heart condition

@donna3

I’m having radiation surgery to remove my tumor. I just started having dizziness and balance problems. Scared it will last forever. I work part time. I love to be outside. We live on an acreage not far from Spencer Iowa. I love to ride my motorcycle with my husband. I look forward to it every year and we are taking a vacation to Tennessee in July. Scared it’s going to ruin my plans. Is there anything g you can tell me about this. I’ve been reading a lot.

Donna

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Donna

I made a decision I sat out of my life long enough. I was diagnosed in 2014 and stopped working because of my balance issues. I found out what was wrong then. I was going through many health issues at the time. This was the scariest. The one thing the doctors at mayo said I did right was I went every year for a new MRI about the same time. It was able to help them gage how fast the tumor was growing. If it had suddenly changed its speed in growth which it had. Go every 6 months. My neurosurgeon kept saying it wasn’t growing but I was showing up with more symptoms. Doctors can be wrong. If I hadn’t sent all my records to Mayo Clinic for another open appointment. I wouldn’t know today that this was growing and at a faster rate. It was 1.9 centermeters when they took it out. Just a few months before it was 1.4 centimeters. So in 3 months it grew .5 centimeters. It’s amazing how they could change and you can suddenly die from these benign tumors. All I know is I wanted something that had the potential to kill me removed.

@jjanes3

Hello- looking for info as well about acoustic neuroma. I have MS and get an yearly MRI. The found it last year but did not inform me it was 3mm. This year it is 4-6mm. I am in the information gathering stage. Thank you

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Jjanes I waited 4 1/2 years before deciding to do something to get rid of my acoustic neuroma. Don’t wait. That’s my advice to anyone first diagnosed. These cause so much damage to our bodies than hearing loss. Depression anxiety from isolation when you’re in a noisy situation and you can’t hear the people that are next to your good ear with a hearing aid. The loss of hearing sometimes is both ears. Insurance companies don’t help. They make it difficult to get a cochlear nerve implant. You have to have less than 50% hearing all the time to get an implant. If it wasn’t for my doctor doing a Peer to Peer I wouldn’t have gotten one and I was at 45% most of the time. I was denied at first then he appealed with a peer to peer. They approved it. Thank you Dr Carlson!!! These Doctors care about their patients! I know first hand that there is unbelievable things happening at Mayo Clinic. Don’t be complacent to stay in your area. Collect everything you all ready have call Mayo get a patient number write them a number and tell them you want doctor Matthew Carlson to take a look at everything. Tell him you want to preserve your hearing. Get rid of the tumor. If he isn’t the doctor to do this he will send you to the guy that is the right one.

Liz from Illinois without an acoustic neuroma now

@rosesareredmylove2016

Hi Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very scary indeed. I went in to my doctor with an earache. They gave me 2 weeks of antibiotics . After that 2 weeks the side of my head still hurt and I was loosing balance. I went back and was sent to a ENT who did an ear biopsy, nasal passage biopsy and an MRI in a 3 week period.
The biopsy showed nothing as well as the nasal scan. But the MRI came back showing a 3.4 centimeter tumor in my ear canal and growing and pushing my brain stem in too the point that they saw Hydrocephalus(water on my brain). I had no headaches after the earache no pain or dizziness , nor imbalance. There were no symptoms at all.
Three weeks later I met with my surgeons and neurosurgeons and they explained the surgery to me and my children. It was a scary time, BUT I have a daughter who is an RN and any questions I didn’t know to answer she did, and by the time my surgery was scheduled, we had all our answers and were as prepared as we could be.
I was diagnosed February 9, 2014, and my surgery was scheduled for March 10, 2014. I am allergic to a lot of the Anastasia drugs they give people when in surgery, so I had to make many scheduled appointments to the neurosurgeons for testing. My surgery was 12 hours. In this 12 hour period I had 4 surgeons and neurosurgeons flip flopping thru my surgery. When one completed their part they came out and updated my daughter so she could update my family as too progress. It took the full 12 hours.
the amazing part is with this surgery it was non cancerous and they scraped on my nerves for 12 hours and needed to leave 2% of the tumor on my brain stem or it would have severed nerves for my face and eye. I am 2 years since this surgery and I still need to see neurosurgeons for MRI and testing. I have imbalance due to the hearing loss in my left ear where the surgery was performed. Things that never bothered me before do now, my balance is still off and will always be off. I just need to adjust my employment and life to the after effects of having needed brain surgery.
Every day is a challenge, but I by the Grace of the Good Lord am alive.

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@roseareredmylove2016
Hi Rose you are a very blessed person. So they did surgery and then the radiation on you. Didn’t you ever get physical therapy for your vestibular system? Thats what I’m going through now to bring it back to normal. It can be retaught. Ask for orders from your family doctor or ENT. This could change your life!

@donna3

I recently was diagnosed with an Acoustic Neuroma. I am seeing Dr Thompson in Omaha NE. I am scared to death how this is going to turn out. I have lost a lot of my hearing in my right ear now.
Today I am also dizzy. I have an appointment with the Dr on the 17th for another MRI and a simulation. He is planning to do a one time radiation treatment the following week. What have you found out about this tumor?
This is really bothering me. Donna

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Donna3

When I went to Mayo Clinic I was offered the Radiation Surgery. It is supposed to stop the acoustic neuroma from growing any bigger. It works well for some people but not at at all for others. Because of this I decided against it. I wanted this thing completely out of my body. I chose durgery. My acoustic neuroma tumor was still small enough to remove easily. I didn’t want further issues than I already have been experiencing. Hypothyroidism neuropathy dead in the left ear 45% hearing in the right ear. I didn’t want paralysis of my face or worse death. So radiation was a no for me. Ad long as they could taint all out I wanted surgery. This is something you need to choose for you. If your doctor doesn’t perform surgery well and you prefer that then go get another opinion. I did and the out come has been fantastic!!

Liz in Illinois I’m pro surgery. By the way I’m 61 years old and have a heart condition but Mayo Clinic took great care of me

@htinlizzy

@kkkk your thyroid nodules are caused from your acoustic neuroma. I know because mine caused hypothyroidism. It’s common. It also causes neuropathy. The longer you have it the more problems you could have. As for what they are doing Mayo Clinic in Rochester Minnesota is doing some ground breaking work that’s amazing. It’s worth going and talk to them. Do you have a heart condition

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Do not think so.

@kkkk

I have been losing hearing in my right ear very gradually over many years. When I mentioned it to my ENT doctor as I was getting two thyroid nodules examined and needle biopsied (which were small and benign), he had me take a hearing test, then sent me for my first MRI because of the auditory test result pattern. I have a small acoustic neuroma 5 x 11 mm. That was about 3 or 4 years ago. Almost a year later, I had another brain MRI, again without and with shot and was told it had not grown and I could wait 2 years before getting a 3rd MRI and thyroid sonogram, which are due this spring. I do not, so far, have other really noticeable problems, except ringing and clicking in my ear and, maybe, sometimes a few balance problems when turning or bending fast or walking in the dark. If the acoustic neuroma causes worse problems and grows too large, I will have to have radiation. These days, the choices are observation, surgery, or radiation. Since I am now 71, the ENT thinks observation of the small tumor is best, and then radiation, if needed. Also, I have been dealing with annoying irritable bowel and refux for several years, too. Hopefully, by the the time I need the AN treated, better treatments will become available. Right now, I am hoping it does not grow. Good luck with your AN journey! Everyone has different circumstances. Hope my story helps you decide what to do and helps ease your mind somewhat. .

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I went to Mayo for what I thought was vertigo, they did a hearing test and I was told by the doctor I had a tumor and needed a MRI. I can't have MRI's due to a metal implant in my body so they did a cat scan. I was told it was normal, however I just recently started having some light vertigo. I'm a flight attendant so even slight vertigo can have an impact but also flying can cause vertigo. So my question was was the cat scan as effective as a MRI and could they have missed ti?

@kkkk

Do not think so.

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I did phone Mayo when I first found that I have an AN, but my insurance at that time was not good in that area. Mayo's office said I could have a DVD of the MRI sent to them.for a second opinion. After my next MRI, I plan to get all three MRIs on a DVD and send them to Mayo's. Now I am on Medicare and a supplement, which should cover better.
Hearing loss seems to be what happens first and balance issues. Depending on the size of the tumor, worse symptoms can occur. My ENT doctor said that radiation is recommened for people past 65 and surgery for younger patients. Smaller tumors are watched with MRIs. 2 percent of radiation cases get cancer, which does not make me very happy, especially since I am already 1 in 100,000 with a AN! When there is surgery or radiation, even worse problems can occur.

@saucy

I went to Mayo for what I thought was vertigo, they did a hearing test and I was told by the doctor I had a tumor and needed a MRI. I can't have MRI's due to a metal implant in my body so they did a cat scan. I was told it was normal, however I just recently started having some light vertigo. I'm a flight attendant so even slight vertigo can have an impact but also flying can cause vertigo. So my question was was the cat scan as effective as a MRI and could they have missed ti?

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That is a question for the doctors.

@kkkk

I did phone Mayo when I first found that I have an AN, but my insurance at that time was not good in that area. Mayo's office said I could have a DVD of the MRI sent to them.for a second opinion. After my next MRI, I plan to get all three MRIs on a DVD and send them to Mayo's. Now I am on Medicare and a supplement, which should cover better.
Hearing loss seems to be what happens first and balance issues. Depending on the size of the tumor, worse symptoms can occur. My ENT doctor said that radiation is recommened for people past 65 and surgery for younger patients. Smaller tumors are watched with MRIs. 2 percent of radiation cases get cancer, which does not make me very happy, especially since I am already 1 in 100,000 with a AN! When there is surgery or radiation, even worse problems can occur.

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I had brain surgery in 2014 for a 3.5 centimeter tumor on my brain stem. Had the 12 hour surgery, still have 2 percent on my brain stem . Since my surgery , I’ve bad balance issues due to hearing loss in left side. Depending on barometer depends on my day, good, bad or other issues. I wish you all the luck in the world and many many blessings.

Hi vickid117, I was diagnosed with an acoustic neuroma a year ago, and I am currently using the observation approach. My neuroma took my hearing in my right ear many years ago. About 3 years ago I got Phonak hearing aids like what you describe, one side hearing aid and the other side a transmitter. At first, I had trouble locating where sound was coming from, but that has gotten much better with time as my brain has adjusted. Hopefully yours will, too. Also, when I go somewhere loud like a sporting event or concert, I usually just turn the hearing aids off. I saw Steven Tyler in January, and it was great! Keep living life to the fullest! Good luck!

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