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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

@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

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@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!

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@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

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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.

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@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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@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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Thanks Colleenyoung

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I was diagnosed with a very small acoustic neuroma in 2012 while searching for a source of pain in the opposite ear. Finally found Squamous Cell Carcinoma in right external ear canal and surgery, radiation, and chemo has been done. Wonderful ENT surgeons at Mayo! We continue to monitor the AN with yearly MRIs as it has proven to be slow growing and is merely 5mm in size. Hearing loss and tinnitus are ongoing. I don't know if my balance issues are due to the temporal bone resection on the right side, as it started then, or possible the AN on the left. Exercises do help with balance. I am hoping that with the slow growth I am experiencing that future radiation treatments may be all that is needed, if any treatment at all.

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I also had surgery for the removal of an acoustic neuroma. 8 week ago .

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@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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I am dnonnie , I had surgery 8 weeks ago and was wondering when you returned to work? my tumor was 2.2 cm and prior to surgery I had lost a lot of my hearing and my balance was deteriorating quickly. I am happy to say I am walking independently but still feel like a walk at times alike a toddler . did you go to vestibular therapy? I do yoga and walk a lot.

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@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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Hi dnonnie, Sounds like you are doing well! I was able to go back to teaching and driving in about 6 weeks. They didn't have therapy back in 1992. I did a lot of balancing exercises on my own. I still have to be careful, once I start to fall I am unable to react and catch myself! Think it is going to be that way for the rest of my life! I just have to be careful of the situations I put myself in. No ladders, etc!
Keep up the yoga and walking you will get your confidence back! Good luck! Hoosier 2

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