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

Do not think so.

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

@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!

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

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.

@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

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 - 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!

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. .

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!