Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
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.
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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 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
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.
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
@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
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
Do not think so.
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?
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.