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.

@jmlane

My husband had radiation the gamma knife surgery worked for him. It has been 10 years and it is actually starting to shrink. It was worth a try rather than the surgery. He went to a balance center and learned how to stop some of the balance issues. There are exercises he does and they help with that. We were happy not to go thru the surgery. We had a great doctor. It is something he will live with the rest of his life. Would do,the gamma surgery rather than open his head.

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I agree totally. My tumor is in cerebello pontine angle along foramen jugulare with partial growth in sinus sigmoideus. Not possible to get it all out without loosing quality of life. My Drs gave me an option to have it embolized to shrink and stop growth & stabilize . That was 5 years ago it worked shrunk 20% and stabile last 5 years no new growth dr thinks it died due no blood. Praying he is right. I also so grateful not to have had cranial surgery. My quality of life is fairly good, deaf in right ear and earlier balance issues which got better with time but I have learned to live with this and my yearly mri. Every good mri is a blessing and another good year to enjoy my life.

@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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Gamma knife surgery worked well for my husband. After 10 years the tumor is actually shrinking and has not grown. It is worth trying rather than the surgery. He did well with it has some balance issues but goes to a balance center in St. Paul mn every few years and that helps. He had great doctors.

First and foremost – I have read a number of the replies and I feel for everyone.

About 10 years ago, while getting ready for work, I had a “filling sensation” in my left ear and I thought I had lost hearing, also, at the same time. Later that day, at work, I realized I had lost hearing when I answered the phone. I learned I had an acoustic neuroma after many tests and a MRI.

I had stereotactic radiosurgery. I feel very lucky compared to many of the people who have left replies. I am almost deaf in the affected ear and I do have the tinnitus. I do have to ask people to repeat themselves and I avoid loud environments but I have always done this because I’m a quiet person. To be honest, I rarely think of the tumor.

The treatment a person chooses is, of course, up to her/him. I’m glad I didn’t choose to have the tumor surgically removed. At the time of my diagnosis I worked in a university library of a major research university in the U.S. I had access to a great deal of literature, including the literature the medical students and faculty used in their research and studies. I read all that I could find before deciding to not have surgery. In my reading of the literature the people that chose surgery had the greater likelihood of lower quality of life. From my experience I can only note that I urge everyone to consider the non-surgical options because my life is good. Again, each person must choose the treatment that is best for her or him.

I wish and hope the best for everyone.

Thank you.

Does anyone else have this so we can see if we can help each other with things that work to stop the dizziness

@breich0226

Does anyone else have this so we can see if we can help each other with things that work to stop the dizziness

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Hi @breich0226, my apologies for the delayed welcome to Connect. You’ll notice that I moved your message about Vestibular Schwannoma (also known as acoustic neuroma) to this existing discussion so you can meet others with a similar diagnosis, like @cynaburst @lindalb @saucy @rosesareredmylove2016 and @amkaloha

Breich, if you click VIEW & REPLY and read through the past messages of this discussion thread, you’ll see that others have talked about dizziness as well. How does the dizziness affect you and how to compensate for it?

@breich0226

Does anyone else have this so we can see if we can help each other with things that work to stop the dizziness

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Three years ago I flew to visit a granddaughter. Collapsed on arrival, and after 3 days in the hospital and many tests, I was told to get an MRI. Since I felt OK, I delayed the MRI until I had difficulty with balance, memory, etc. The MRI showed that I had hydrocephalus and an acoustic neuroma on the right side. Don’t know whether one caused the other, but the neurosurgeon inserted a shunt into my brain. Had an MRI in Dec. and the doctor says the neuroma is not growing but the pressure on the auditory nerve is causing more loss of hearing in my right ear. He does not recommend surgery.
Recently have had problems with dizziness. Otherwise, the shunt seems to be working. I continue to drive, do yard work, travel, and enjoy the grandchildren. For some reason, the neurosurgeon does not recommend the cyberknife. Has anyone had a negative experience with this procedure?

In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo in Rochester for my yearly physical. I mentioned to my Dr. that I thought I had lost a bit of my hearing. After a hearing check, he ordered an mri with contrast which confirmed the neuroma. I was introduced to Dr Harner a specialist on acoustic neuroma’s and their treatment. As I remember, at that time, there were not a lot of options. After much discussion we decided on surgery to remove
the neuroma. I had the surgery about a month later at Mayo and all went well! A couple of days later they discovered I was a “leaker” which meant I was loosing fluid from the brain cavity through my nose. Answer, another surgery to repair the leak. All went well and a month later I returned to teaching and my consulting business. My balance was suspect, but something I could live with. When I eat my nose runs, again,something I can live with! I was very fortunate to be at Mayo and have the surgery when I did! I’m 82 now and still teaching and doing consulting! Good luck with your decision and wish you a good outcome! Please contact me if I can answer any questions or help in any way!

@breich0226

Does anyone else have this so we can see if we can help each other with things that work to stop the dizziness

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Good question, Pedie. @mrser52 talks about the stereotactic radiosurgery (SRS) experience here. https://connect.mayoclinic.org/discussion/meningioma-brain-tumor-on-right-trigeminal-nerve/

You might also be interested in this discussion:
– Meningiomas. Gamma knife or Cyber Knife. Which is more effective? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/

@hoosier2

In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo in Rochester for my yearly physical. I mentioned to my Dr. that I thought I had lost a bit of my hearing. After a hearing check, he ordered an mri with contrast which confirmed the neuroma. I was introduced to Dr Harner a specialist on acoustic neuroma’s and their treatment. As I remember, at that time, there were not a lot of options. After much discussion we decided on surgery to remove
the neuroma. I had the surgery about a month later at Mayo and all went well! A couple of days later they discovered I was a “leaker” which meant I was loosing fluid from the brain cavity through my nose. Answer, another surgery to repair the leak. All went well and a month later I returned to teaching and my consulting business. My balance was suspect, but something I could live with. When I eat my nose runs, again,something I can live with! I was very fortunate to be at Mayo and have the surgery when I did! I’m 82 now and still teaching and doing consulting! Good luck with your decision and wish you a good outcome! Please contact me if I can answer any questions or help in any way!

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Hi @hoosier2! When I first started at Mayo I worked with Dr. Harner- when I picture him I just remember how he would always look over the top of his glasses. 🙂 What a wonderful physician.

@hoosier2

In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo in Rochester for my yearly physical. I mentioned to my Dr. that I thought I had lost a bit of my hearing. After a hearing check, he ordered an mri with contrast which confirmed the neuroma. I was introduced to Dr Harner a specialist on acoustic neuroma’s and their treatment. As I remember, at that time, there were not a lot of options. After much discussion we decided on surgery to remove
the neuroma. I had the surgery about a month later at Mayo and all went well! A couple of days later they discovered I was a “leaker” which meant I was loosing fluid from the brain cavity through my nose. Answer, another surgery to repair the leak. All went well and a month later I returned to teaching and my consulting business. My balance was suspect, but something I could live with. When I eat my nose runs, again,something I can live with! I was very fortunate to be at Mayo and have the surgery when I did! I’m 82 now and still teaching and doing consulting! Good luck with your decision and wish you a good outcome! Please contact me if I can answer any questions or help in any way!

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Me too! He saved my life! He was ahead of his time!

Liked by Jamie Olson

@breich0226

Does anyone else have this so we can see if we can help each other with things that work to stop the dizziness

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@pedie

I am glad to hear that your current treatment (the shunt) is working well for you. That is wonderful that you are able to drive and enjoy other activities. However, if you are experiencing more dizziness, I can understand your concern.

Have you mentioned this to your doctor? Did your doctor say why he does not recommend surgery? When there is uncertainty about a course of action, a second opinion is always wise. Have you sought a second opinion yet?

Teresa

@hoosier2

In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo in Rochester for my yearly physical. I mentioned to my Dr. that I thought I had lost a bit of my hearing. After a hearing check, he ordered an mri with contrast which confirmed the neuroma. I was introduced to Dr Harner a specialist on acoustic neuroma’s and their treatment. As I remember, at that time, there were not a lot of options. After much discussion we decided on surgery to remove
the neuroma. I had the surgery about a month later at Mayo and all went well! A couple of days later they discovered I was a “leaker” which meant I was loosing fluid from the brain cavity through my nose. Answer, another surgery to repair the leak. All went well and a month later I returned to teaching and my consulting business. My balance was suspect, but something I could live with. When I eat my nose runs, again,something I can live with! I was very fortunate to be at Mayo and have the surgery when I did! I’m 82 now and still teaching and doing consulting! Good luck with your decision and wish you a good outcome! Please contact me if I can answer any questions or help in any way!

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I was referred to Dr. Patrick J. Kelly at Mayo Clinic in November 1992. I had emergency stereotactic craniotomy to remove a tumor that was located in my left ventricle. The pathology results came back that is was an intraventricular pilocytic astrocytoma. A rare benign tumor. I, too, was very fortunate to be at Mayo Clinic. That was 25 years ago and I’m still going strong. I wish you the best of luck!

@hoosier2

In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo in Rochester for my yearly physical. I mentioned to my Dr. that I thought I had lost a bit of my hearing. After a hearing check, he ordered an mri with contrast which confirmed the neuroma. I was introduced to Dr Harner a specialist on acoustic neuroma’s and their treatment. As I remember, at that time, there were not a lot of options. After much discussion we decided on surgery to remove
the neuroma. I had the surgery about a month later at Mayo and all went well! A couple of days later they discovered I was a “leaker” which meant I was loosing fluid from the brain cavity through my nose. Answer, another surgery to repair the leak. All went well and a month later I returned to teaching and my consulting business. My balance was suspect, but something I could live with. When I eat my nose runs, again,something I can live with! I was very fortunate to be at Mayo and have the surgery when I did! I’m 82 now and still teaching and doing consulting! Good luck with your decision and wish you a good outcome! Please contact me if I can answer any questions or help in any way!

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Hello @lynda1992

Thank you for sharing your great experience. I’m sure that it will encourage others who are facing something similar.

Teresa

In 2012 I had almost a 4cm Acoustic Neuroma Brain Tumor. It will depend on the size of the Acoustic Neuroma Brain Tumor what plan of Action to take. I will tell you, you want a doctor that is well versed in doing this type of surgery I live in GA and I went to Vanderbilt in Nashville Tn for my surgery. There is an Acoustic Neuroma Association and on the web site it will show where there is doctors that are known for doing these types of tumors.

@bfuller We appreciate your sharing your experience with us at Mayo Connect. I see that you just joined Connect and I’d like to welcome you.

At Connect we seek to encourage and support each other as we deal with difficult medical problems. The sharing of your plan of action was a good one and you were right to find a doctor well versed in this type of surgery.

If you care to share any details of your surgical experience, we would like to hear about it. Did you notice a relief of symptoms right after surgery? How are you feeling now?

Teresa

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