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.

Yesterday was my 12 year anniversary! 10 hour surgery and I found out later I had hydrocephalus and had a LP shunt put in. I lost some movement on the right side of my face and full hearing in my right ear.

There are days that I forget that I had a tumor and I’m so grateful for everything the Mayo and the surgeons were able to do.

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I am having a ct scan thurs as my Mayo Dr suspects I have a tumor in my ear canal. Had never heard of this but losing my hearing in one ear. Looking for info on this, Thanks

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@cynaburst

I had an acoustic neuroma and had surgery 13 years ago to remove it. Can I help you?

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Yes! what was the out come and how did the surgery go?

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@jjanes3

Hello- looking for info as well about acoustic neuroma. I have MS and get an yearly MRI. The found it last year but did not inform me it was 3mm. This year it is 4-6mm. I am in the information gathering stage. Thank you

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What are the eye issues as I am having weird lights in the morning when my eyes are closed. See a neuro eye doctor after cat scan

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Hi Tracy, I had my tumor in 1992, My Dr. at Mayo found it when I complained of loss of hearing in my left ear. Had surgery and all went well! Lucky to have found it when it was small. I lost the hearing in my left ear and have a bit of a problem with balance. Have to be careful! When I eat my nose runs, small problem! I have been able to continue my work, consulting engineer, and I teach at a university. I’m now 82 and doing well!
Strange thing about my tumor is that my mother and her mother died of brain tumors at an early age. Back then there was no way to know what the tumor was. I would suggest getting to Mayo quickly to see how they recommend treatment! Good luck and let me know if I can help with any questions!
Gerry

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An acoustic neuroma on the right side of my brain destroyed hearing in my right ear. It was discovered when I had an MRI to diagnose hydrocephalus. When the neurologist did surgery to insert a shunt, he decided that the neuroma should be “watched.” Have some balance problems, but am able to function fairly well. Also have neuropathy in my feet, thanks to chemo and radiation, which probably adds to the balance problems.

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@saucy

I am having a ct scan thurs as my Mayo Dr suspects I have a tumor in my ear canal. Had never heard of this but losing my hearing in one ear. Looking for info on this, Thanks

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Hello Saucy: I saw u posted that your having a ct scan for tumor in your ear scheduled. I had ear infections for 9 years, had massive amounts of anti-biotics. after ct scans, biopsy, and cultures. My doctor Finally did a MRI..Unfortunately an MRI is the only way they can see it. Sooo if I was you., and to save some time and frustration, just opt for the MRI.
By the time they found my tumor in my ear canal. It was 3.5 centimeters across and was pushing on my brain stem and causing hydpcephalys. I am by no means trying to scare you. I underwent a 12 hour surgery, …If i would have not had to take all the antibiotics for years for ear infections, they may have found it sooner.
But as for now, because of my surgery, I lost complete hearing in my left side….Who is your Doctor? Talk to her or him…If they know theres a tumor in your canal, they should be doing a MRI

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@saucy

I am having a ct scan thurs as my Mayo Dr suspects I have a tumor in my ear canal. Had never heard of this but losing my hearing in one ear. Looking for info on this, Thanks

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I was diagnosed with my Swannoma in 2014, Dr Huong is my ENT at The Mayo in Minneapolis…Go see her, She is AWESOME, The sooner they find its size out, the better.My surgery was a bit difficult because I’m alergic to lots of drugs and anasteshias.So keeping me asleep wa a bit of a chore for them, I did a lot of testing before my surgery.
Unfortunately Ive lost a lot of balance due to the surgery. Enough that I’ve had to go from working a full 40 hour work week to 4-5 hours , three days a week. I cannot tell where sound is coming from, an my balance is way off some days.
Everyones after surgery state is different I’m told…Good luck, I will keep you in my prayers, Please let me know what the CT scan finds…And how you are doing..
I find it interesting whenever I see a new post on the MAYO blog…

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There has been much discussion about MRI diagnosis, so I would like to bring everyone’s attention to an article in the September 19th issue of the Wall Street Journal which was entitled, A QUESTION FOR ANYONE GETTING AN MRI. This article basically says, “Patients need to know if the doctor plans to use Contrast or Gadolinium, because it may leave harmful metal deposits; a new FDA warning …..Earlier this month an advisory committee to the U.S. Food and Drug Administration voted 13 to 1 in favor of adding a warning on labels that Gadolinium can be retained in some organs, including the brain, and even in patients with healthy kidneys.” When this article appeared, I called my physician and found that our hospital used Gadolinium and I refused treatment there. I am now in search of an MRI complex that only uses Contrast. Check the September 19th issue of the Wall Street Journal at your library, so you can read the rest of the the article covering the effects of Gadolinium on a 55-year-old woman from Cleveland and decide what you want to do Floridaellie

Liked by lindalb

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@floridaellie

There has been much discussion about MRI diagnosis, so I would like to bring everyone’s attention to an article in the September 19th issue of the Wall Street Journal which was entitled, A QUESTION FOR ANYONE GETTING AN MRI. This article basically says, “Patients need to know if the doctor plans to use Contrast or Gadolinium, because it may leave harmful metal deposits; a new FDA warning …..Earlier this month an advisory committee to the U.S. Food and Drug Administration voted 13 to 1 in favor of adding a warning on labels that Gadolinium can be retained in some organs, including the brain, and even in patients with healthy kidneys.” When this article appeared, I called my physician and found that our hospital used Gadolinium and I refused treatment there. I am now in search of an MRI complex that only uses Contrast. Check the September 19th issue of the Wall Street Journal at your library, so you can read the rest of the the article covering the effects of Gadolinium on a 55-year-old woman from Cleveland and decide what you want to do Floridaellie

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Here is a link to the Wall Street Journal to which @floridaellie refers. Note that you need to subscribe to WSJ to access the article
– WSJ: A Question for Anyone Getting an MRI https://www.wsj.com/articles/a-question-for-anyone-getting-an-mri-1505751710

Also here is the FDA article posted May 22, 2017
– FDA Drug Safety Communication: FDA evaluating the risk of brain deposits with repeated use of gadolinium-based contrast agents for magnetic resonance imaging (MRI) https://www.fda.gov/Drugs/DrugSafety/ucm455386.htm

Liked by lindalb

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@saucy

I am having a ct scan thurs as my Mayo Dr suspects I have a tumor in my ear canal. Had never heard of this but losing my hearing in one ear. Looking for info on this, Thanks

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Thanks but cannot have MRI's due to a LYNX device

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@saucy

I am having a ct scan thurs as my Mayo Dr suspects I have a tumor in my ear canal. Had never heard of this but losing my hearing in one ear. Looking for info on this, Thanks

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Thanks!

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I am concerned that you cannot link to the Wall St Journal article of September 19 entitled “A QUESTION FOR ANYONE GETTING AN MTRI” unless you are a subscriber. If you wish, I will contact the Journal and ask if they could send this to you. If so, what would your email address be? floridaellie

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@floridaellie

I am concerned that you cannot link to the Wall St Journal article of September 19 entitled “A QUESTION FOR ANYONE GETTING AN MTRI” unless you are a subscriber. If you wish, I will contact the Journal and ask if they could send this to you. If so, what would your email address be? floridaellie

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No problem, Floridaellie. That is the business model of the WSJ. Subscription only costs $1 for the first 3 months. However, it is good Internet protocol to warn people when sending them a link to something that is behind a paywall. Hence my note. I like that you suggested people look for the edition in their public library. Great option.

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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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