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Posts (8)

Mar 2, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor


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

Mar 2, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor

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!

Mar 2, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor

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

Mar 2, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor


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.

Mar 2, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor

@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

Mar 2, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor

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

Mar 2, 2019 · Burning Mouth Syndrome (BMS): Anyone found any relief? in Skin Health

I was told I had burning mouth syndrome and tried that. I was taking B-Complex. It didn’t get any better in fact I got worse. I believe mine was a misdiagnosis so I went to compare pictures to what saw in my mouth on Mayo’s website. My husband helped me and we both thought it looked like Lichen Planas. It’s when your immune system attacks the mucous lining of your mouth. You need to see an oral surgeon to be sure. So I made my appointment and we were right it was lichen planas. You have to change your diet by no more spicy food or citrusy food. So the sores can heal. If you have sores. See an oral surgeon. Get another opinion. There are things that can be done to help with the pain.

Liz in IL

Mar 1, 2019 · Gratitude Discussion Group in Just Want to Talk

Hi I’m new to the group and Mayo Clinic. I’ve been coming here since October 2018. I had an Acoustic Neuroma tumor in my left ear since 2014. I’m 61 years young. The tumor began to grow and cause problems for me. The neurosurgeon I was seeing for it kept telling me it hadn’t changed in size but my symptoms sure had changed. So I looked to my ENT for help and told him I wanted to go to Mayo Clinic for the surgery to remove the tumor and get a cochlear nerve implant because my hearing was diminishing in my only good ear. I was down to 45% hearing in my right ear and no hearing in my left ear. That’s what the Audiologists found her at Mayo. I still had life in my cochlear nerve if they turned the volume up all the way. So this meant I had a 50% chance of the surgery working. I have Dr Matthew Carlson as my Doctor here at Mayo. I come back Monday for them to turn on my implant for me. I also have Aniket Saoji that is doing everything for my implant and Christopher J Plummer that worked with Dr Carlson on me! They are the best angels you can have!!! I’m so anxious to hear out of my left ear. I just know this is going to work. These three angels that operated on me worked a miracle for me on the 21st and they are my 1st and biggest gratitude!!!!

Liz waiting to hear in Illinois