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.

@cinlu

I have been recently diagnosed with this condition as well as normal pressure hydrocephalus.
On Dec 9, I had a shunt placement and healing from this surgery to continue on with another surgery in February to remove the schwannoma or acoustic neuroma and I will lose hearing in affected ear.
This seems like so much to grasp for myself. Scary stuff.

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@cinlu, it's a lot to take in having 2 conditions and 2 head surgeries in quick succession. You may also be interested in these related discussions about NPH;
- What's the latest normal pressure hydrocephalus (NPH) research https://connect.mayoclinic.org/discussion/normal-pressure-hydrocephalus-2/

- Had Surgery for Normal Pressure Hydrocephalus (NPH)? Are you glad https://connect.mayoclinic.org/discussion/if-you-have-had-surgery-for-nph-are-you-glad/

Cinlu, how was your recovery from the shunt placement? Do you have questions about your upcoming surgery in February?

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I had a consultation last week. The doc described the tumor as schwannoma, though not specifically an acoustic neuroma. He recommended surgery or radiation. The MRI was the best test available. A talk with another doc happens on Monday.

On this forum people said they were told that a 2% chance of some other tumor happening from radiation. I asked about it; he said it's a pretty low dose, and the chance is about 2/10ths of 1%.

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@colleenyoung

@cinlu, it's a lot to take in having 2 conditions and 2 head surgeries in quick succession. You may also be interested in these related discussions about NPH;
- What's the latest normal pressure hydrocephalus (NPH) research https://connect.mayoclinic.org/discussion/normal-pressure-hydrocephalus-2/

- Had Surgery for Normal Pressure Hydrocephalus (NPH)? Are you glad https://connect.mayoclinic.org/discussion/if-you-have-had-surgery-for-nph-are-you-glad/

Cinlu, how was your recovery from the shunt placement? Do you have questions about your upcoming surgery in February?

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Thank you Colleen.
My shunt placement on December 9th was sidelined with the Neurosurgeon knicking my liver when he was sending the tubing to the. peritoneal area and needed a general surgeon to perform an emergency to stop the bleeding. Have had intense pain since in the liver area but shunt is healing nicely.
I have been to the surgeons office, had an xray and to the Emergency Room, had a CT Scan with contrast. Doctors can’t seem to find an answer. Have to be on pain meds to control the pain.

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