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.

Tracey this journey has been challenging but not impossible ! Since we really don’t have the option to do nothing we must push through with strength and the knowledge that we are here to tell you we lived !!You are very unbalanced after surgery however our miraculous brain compensated within hours of the removal of your Vestibular nerve !!! You must choose the best surgeon ! Be strong challenge yourself daily and with a few weeks post op you will be on your way ! Do not let the worst scare you ! I believe the Lord is with us and he will guide your decisions !! Most importance get a great surgeon who has experience !! Mine was fabulous if you need suggestions let me know ! Mine is in Philadelphia PA @ Jefferson Neuroscience Hospital !! This is key to success !!! Praying for your journey

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@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes …. including death. I'm looking for personal information and advice. Thanks for any help.

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I woke up in 2008 and was unable to hear well on left side. Drs at first thought it was a virus. After MRI confirmed AN. It was in the inner ear chamber and very small. We watched it until 2013 and it started to grow a little. I had a month of fractional radiation which left me completely deaf on the left. Because of deafness I had a bone assisted hearing device BAHA on the
Left so can now hear on that side with peocessor. The severity on AN has to do with size and where it is located. I had the radiation as my dr was worried it would eventually affect equilibrium or facial nerve. I have no side affects at this time. Just having a diagnosis is scary but one needs to remember that all tumors are different

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@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes …. including death. I'm looking for personal information and advice. Thanks for any help.

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Thank you for that. I am newly diagnosed and scaring myself silly

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@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes …. including death. I'm looking for personal information and advice. Thanks for any help.

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Hey @odnut – when I had my AN surgery, I was also scared silly. I was convinced I would never live a normal life again. Now, it is 16 years later, and I rarely even think about my AN experience (except when I can't hear in a restaurant! 🙂 I thought you might enjoy reading this essay called "Getting Back Up on the Horse Again" I wrote a couple of months ago to give you some hope. This will be an unpleasant chapter in your life, but it will pass by and things will return to a new normal for you.

Wishing you the best.

Cynthia

http://www.cynthiassummeradventure.blogspot.com

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@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes …. including death. I'm looking for personal information and advice. Thanks for any help.

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Cynthia, That is an inspiring essay and thank you for sharing it. You have incredible strength with all the health challenges you have been through! I am so very happy for you that you could again experience the exhilaration of riding a saddlebred, after your exciting show career. I have also been able to ride again after my ear cancer surgery left me balance-impaired, and I have a saddlebred, but just for trail riding. I also "own" an AN but it has remained small over the past 6 years and has vnot required treatment yet. Good luck to you, and keep on inspiring others with your story.

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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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@katfred have you returned to work ? Are you over 50 yrs old ?? I’m curious because I’m still unbalanced but I’m 24 weeks postvsurgery

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Hi:
Yes, I have heard of these tumors. Do you still have the Tumor. If you do I would call the Mayo Clinic up as soon as possible

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Recognized loss of hearing on one side, then audiologist recognized something wrong. MRI revealed it. Received Gamma Knife treatment. I have a significant hearing loss in that ear. Tumor has been shrinking. Did some physical therapy for balance. Would love to know of support group. egolightly

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@estherhg

Recognized loss of hearing on one side, then audiologist recognized something wrong. MRI revealed it. Received Gamma Knife treatment. I have a significant hearing loss in that ear. Tumor has been shrinking. Did some physical therapy for balance. Would love to know of support group. egolightly

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Hello @estherhg and welcome to Mayo Connect.

I appreciate your joining this discussion as we all learn from each other's experiences. I am glad to hear of your treatment and that the tumor is shrinking as a result of the Gamma Knife treatment. How long ago was this treatment? Does your doctor think that your hearing will improve now that the tumor is shrinking?

You mentioned that you would like a support group and I found one website that discussed different groups. Here is a link to the website where you can learn more about that http://vestibular.org/acoustic-neuroma.

I look forward to hearing from you again.

Teresa

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@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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My dad had one. Diagnosed 63 years ago in 1955. He lost his hearing in one ear and developed Bell’s Palsy and had to have muscle transfers to lift the right side of his face back up. His mom had an identical tumor and his father died in 1926 from a brain tumor.

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@kkkk

About a year ago I was diagnosed with a small acoustic neuroma. (I am now 69. My doctor said the median age is 71, and they do not like to operate on older people.) My doctor suggested it best to wait and watch it since I do not notice symptoms yet, except for some gradual hearing loss in my right ear and ringing in my ears. Living one day at a time and trying to enjoy each day has been my goal. When necessary, the doctor suggested radiation therapy, which can cause it to become cancer in 2 % of cases. I am not at all enthused about any kind of surgery, especially on my head. I am really hoping for a new kind of treatment, such as immuno-type therapy where you take a pill, and it goes to the tumor and shrinks it or makes it disappear. Some doctors are now using it for cancer tumor treatment with some amazing results.

I just wanted people with acoustic neuroma to know you are not alone, and I know it is like sitting on a time bomb and is quite nerve racking. I try to keep busy and not dwell on it. We can try to find some talented doctors, pray for a cure, and hope for the best. Good luck to you all!

I also have two small thyroid nodules that the doctor is watching; the larger one checked was benign. Thank God! Last month I had an attack of acute pancreatitis and was in the hospital four days, three on an IV. They could not find out exactly what caused the problem but thought a gall stone traveled through my pancreas. Now I have tendonitis in my right foot from going up and down 14 steps too much. (My daughter recently had a breech C-Section and could not climb up and down her stairs for several weeks.) For over the past year, it seems I just get one problem paid for and get another. Hopefully, it will not get any worse this year. I am still feeling pretty good, though – even with all of my medical problems.

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Hi @rosesareredmylove2016, I'm not sure if you saw the previous message from @odnut who is going to U of M for treatment of acoustic neuroma, and asks if you have some experience and insight to share on the care you received there.

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@donna3

Is there anything to make my dizziness or unbalanced feeling go away while I’m waiting to be treated for my AN ?

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I went to Vestibular therapy for 8 weeks and it improved The opposite side of the brain will compensate somewhat .. you still will have dizzy moments though and if the tumor grows the balance is affected and you will notice this I could tell by my golf game …

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@katfred

I was diagnosed 2 months ago and im suppose to have surgery this week

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Be sure to check the ANA site for preparing for surgery I made a few accommodations that were really helpful ! Put all your toiletries Up high , shower chair, wedge pillow for bed , walker, cane , put your clothing in upper drawers to reduce bending forward , have support person for first week home can be really challenging .. but it’s a miracle how quickly your unaffected side kicks in !!! Wish you success You will do great !

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I have an acoustic neuroma and was going to go through that big, bad surgery. I prayed about it and got an answer to prayers. Gamma Knife "surgery" was performed on Nov. 23, 2012 at Midland Medical Center, in Midland, Michigan. It is non-invasive, however, it shoots nuclear rays to the tumor. I also have a Meningioma above my left eye. I lost most of the hearing in my right ear, and have constant ringing and chirping in that ear as well. A hearing aid doesn't help much because of the damage done by gamma rays. I have had 2 MRI with contrast since 2012 and both tumors have not grown, but aren't gone. I still have balance issues, but I blame that on having both knees total replacement and ankle and arch reconstruction in the past 5 year. I also try to live life to the fullest, even with all of the major surgeries I've gone through. I actually don't think about the tumors very often because so far they are benign. Good luck and prayers to anyone going through this issue. But please check out the Gamma Knife procedure.

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Thanks for all the information and support provided by this group. I just got my diagnosis of AN last week, about 2 hours before my mother's funeral. Trying times to say the least. I am meeting with my team of doctors at Mayo next month. I already have 95% hearing loss on the affected side and tinnitus, so that will not be an issue. The headaches and vertigo have become more pronounced since January. Thanks everyone for sharing your stories, so I know a little more what to expect.

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