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.

@katfred

Tomorrow i have appointments all day with E.N.T videonystagmogram , i guess its a mandatory testing before i have surgery the 23rd. If my imbalance is from my tumor, why is this testing needed? Thabk you

Jump to this post

I have no idea what a videonystagmogram is, so I can’t answer you. Have you looked into Gamma Knife at all?

My doctor only suggested surgery

So did mine. I explored my options. Everyone has to do what she thinks best. Good luck to you.

@amkaloha

When I found that I had an AN, my primary doctor insisted that I go to Yale and have something done immediately. When I told him I found and alternative, he was not too happy I guess because this GK was so new and didn’t have a history yet. He was upset with my choice to do it but after it was done and he saw how good it went and kept getting the yearly MRI reports of its shrinking, he told me he was wrong and would recommend GK to anyone who had an AN. I think because of him, I thought I had to act quickly. In hindsight I now know that these are slow growing and you don’t need to act quickly. You and your doctor are doing the right thing. This way you can do your homework.

Jump to this post

For further reading, here is information from Mayo Clinic on the gamma knife also known as brain stereotactic radiosurgery http://mayocl.in/2egI5oM

@katfred

Tomorrow i have appointments all day with E.N.T videonystagmogram , i guess its a mandatory testing before i have surgery the 23rd. If my imbalance is from my tumor, why is this testing needed? Thabk you

Jump to this post

Hi Kat,
That is a very good question to ask the ENT doctor tomorrow. I wish I had an answer for you. Would you write us after tomorrow to let us know what you find out about why this test is done.

For others reading this, here is a description about Videonystagmography (VNG) from Mayo Clinic.
“This test evaluates balance function by assessing eye movement. Balance-related sensors in the inner ear are linked to muscles that control eye movement. This connection enables you to move your head while keeping your eyes focused on a point. In a VNG evaluation, warm and cool water or warm and cool air are introduced into the ear canal. Measurements of involuntary eye movements in response to this stimulation are performed using a special pair of video goggles.”

Kat, it would be really informative to hear straight from the source (you) what this test is like. I hope you’ll share when you’re up to it.

I should do more homework on how to do this site, but hopefully I am on the right path. I am symptom free, so how did they find my acoustic neuroma? In 2011, I had an unrelated severe headache, had an MRI (w/o contrast as I waived it), and it showed a 4mm or so possible menegioma. My blood test ended up revealing a parathyroid adenoma (too much calcium in blood) which was removed that year at MD Anderson by an awesome doctor. I got a hearing test, as advised after MRI, and had no problems. I had not idea I should be monitoring it. Fast forward to August of this year. I had a physical, and my doctor advised me to monitor it, and sent me for an MRI with and w/o contrast, and schwannoma/acoustic neuroma was neurologist diagnosis. What I didn’t expect was the advice of gamma knife. Doc said my tumor was small enough to do it now, but if it grows, the options are fewer. I will see a radiology oncologist next month for further info. Of course it concerns me. I have decent health for a 58-year-old. I don’t take any meds and am trying to stay clear of ever creeping up BP. Is gamma knife the way to go? I have heard of proton therapy, and MD Anderson is close by. I don’t know the major difference, and if I am even a candidate. I know I am lucky this neuroma was discovered before I had balance and hearing problems. Reading all the posts made me count my blessings on how this unfolded and the options I have. I guess I am looking for advice, information, and experiences. I have read a few already. Thanks for your time.

@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

Jump to this post

@katfred Just wanted to tell you that I reading your posts makes me realize I may need to act on a doctor’s advice. Though my regular doc and I both are hesitant about rushing into gamma knife treatment (because the radiologist’s report), I am understanding why the the neurologist I saw advised gamma knife. He said the small size makes it safer for surrounding tissue. I just don’t want to rush into this either as it is radiation.But, it sure puts things into perspective to read about everyone and their challenges with this thing. Thank you and good luck. I hope you experience relief soon. My prayers are with you.

@jrismyname

I should do more homework on how to do this site, but hopefully I am on the right path. I am symptom free, so how did they find my acoustic neuroma? In 2011, I had an unrelated severe headache, had an MRI (w/o contrast as I waived it), and it showed a 4mm or so possible menegioma. My blood test ended up revealing a parathyroid adenoma (too much calcium in blood) which was removed that year at MD Anderson by an awesome doctor. I got a hearing test, as advised after MRI, and had no problems. I had not idea I should be monitoring it. Fast forward to August of this year. I had a physical, and my doctor advised me to monitor it, and sent me for an MRI with and w/o contrast, and schwannoma/acoustic neuroma was neurologist diagnosis. What I didn’t expect was the advice of gamma knife. Doc said my tumor was small enough to do it now, but if it grows, the options are fewer. I will see a radiology oncologist next month for further info. Of course it concerns me. I have decent health for a 58-year-old. I don’t take any meds and am trying to stay clear of ever creeping up BP. Is gamma knife the way to go? I have heard of proton therapy, and MD Anderson is close by. I don’t know the major difference, and if I am even a candidate. I know I am lucky this neuroma was discovered before I had balance and hearing problems. Reading all the posts made me count my blessings on how this unfolded and the options I have. I guess I am looking for advice, information, and experiences. I have read a few already. Thanks for your time.

Jump to this post

I can understand your confusion. When I had mine in 1997 they did not have proton therapy. I think I would have looked into it though. In Gamma Knife they attach a ‘halo bracket’ onto your head. They use screws and they go into your skull bone. Sounds awful but they give you a local anesthetic and it really doesn’t hurt. It’s weird walking around with this thing attached to your head though! They use it to calculate where the radiation should go to reach the tumor and avoid the rest of your brain area. If you don’t like the idea of that, I think proton therapy just uses a cap that is not attached to your head. I was 57 when I had this done, so we are/were close in age. I am now 76 and the last time I had an MRI (about 2 years ago), it had shrunk a little more. So GK really does work. Good luck to you. I would be more than happy to answer any other questions you might have. Happy Thanksgiving to you.

@jrismyname

I should do more homework on how to do this site, but hopefully I am on the right path. I am symptom free, so how did they find my acoustic neuroma? In 2011, I had an unrelated severe headache, had an MRI (w/o contrast as I waived it), and it showed a 4mm or so possible menegioma. My blood test ended up revealing a parathyroid adenoma (too much calcium in blood) which was removed that year at MD Anderson by an awesome doctor. I got a hearing test, as advised after MRI, and had no problems. I had not idea I should be monitoring it. Fast forward to August of this year. I had a physical, and my doctor advised me to monitor it, and sent me for an MRI with and w/o contrast, and schwannoma/acoustic neuroma was neurologist diagnosis. What I didn’t expect was the advice of gamma knife. Doc said my tumor was small enough to do it now, but if it grows, the options are fewer. I will see a radiology oncologist next month for further info. Of course it concerns me. I have decent health for a 58-year-old. I don’t take any meds and am trying to stay clear of ever creeping up BP. Is gamma knife the way to go? I have heard of proton therapy, and MD Anderson is close by. I don’t know the major difference, and if I am even a candidate. I know I am lucky this neuroma was discovered before I had balance and hearing problems. Reading all the posts made me count my blessings on how this unfolded and the options I have. I guess I am looking for advice, information, and experiences. I have read a few already. Thanks for your time.

Jump to this post

Welcome @jrismyname. You posted to Connect perfectly. If you’d like a few “how to” tips, please visit this page https://connect.mayoclinic.org/get-started-on-connect/

I’m glad that you’ve connected with @amkaloha already and got a first-hand account of the Gamma knife. Keep in mind that Gamma Knife is a brand name, as is Cyberknife. This type of treatment is called stereotactic radiosurgery. It’s also known as radiosurgery, stereotactic ablative surgery (SABR) and stereotactic body radiotherapy (SBRT).

Here’s some further reading and videos that you might find useful:
Stereotactic radiosurgery http://mayocl.in/2gv6HYR
Proton Beam Therapy program http://mayocl.in/2fhZ7Do

You’re lucky that you live near MD Anderson and that they offer both options. Did your doctor mention that you were a candidate for either treatment?

@jrismyname

I should do more homework on how to do this site, but hopefully I am on the right path. I am symptom free, so how did they find my acoustic neuroma? In 2011, I had an unrelated severe headache, had an MRI (w/o contrast as I waived it), and it showed a 4mm or so possible menegioma. My blood test ended up revealing a parathyroid adenoma (too much calcium in blood) which was removed that year at MD Anderson by an awesome doctor. I got a hearing test, as advised after MRI, and had no problems. I had not idea I should be monitoring it. Fast forward to August of this year. I had a physical, and my doctor advised me to monitor it, and sent me for an MRI with and w/o contrast, and schwannoma/acoustic neuroma was neurologist diagnosis. What I didn’t expect was the advice of gamma knife. Doc said my tumor was small enough to do it now, but if it grows, the options are fewer. I will see a radiology oncologist next month for further info. Of course it concerns me. I have decent health for a 58-year-old. I don’t take any meds and am trying to stay clear of ever creeping up BP. Is gamma knife the way to go? I have heard of proton therapy, and MD Anderson is close by. I don’t know the major difference, and if I am even a candidate. I know I am lucky this neuroma was discovered before I had balance and hearing problems. Reading all the posts made me count my blessings on how this unfolded and the options I have. I guess I am looking for advice, information, and experiences. I have read a few already. Thanks for your time.

Jump to this post

Hi: jrismyname: I had the same thing happen too me sorta.. Id had inner ear infections since I was a small child. Prior to my brain surgery in 2014 I had inner ear infections for 9 years and they were always treated with antibiotics., the ear infections went away, but always came back. I had NO headaches, NO eye problems, No hearing problems or imbalance issues before my surgery. So just having a headache can be beneficial as far as finding a Brain tumor I guess….
There are those of us who are symptom free when doctors diagnose for an illness.

I was diagnosed in April of 2016, after discovering I had two thyroid nodules, too. It was a double shock and very depressing. The doctor said I had probably had the acoustic neuroma, at least, 10 years, and it was still small, about 5 x 11 mm, peanut sized. The only noticeable symtoms over the years were worsening hearing loss in my right ear, especially high tones, and ringing in my ears, also a clicking sound. An audio test was done and a brain MRI suggesed. The two small thyroid nodules were discovered when I had a free screening at the library. After a needle biopsy of the larger one, about an 7+ nodule, he said it was benign. THANK GOD! I am supposed to get another MRI around Easter, which is nervewracking, which has terribly loud noises and some vibration on lower tones. (My daughter is having her first baby, a boy, due in April; and I am hoping things do not get any worse, especially then.) When the doctor sees the next MRI, he will also check the thyroid nodules. (I can just pray for the best, which would be a stopage of growth.) The choices for treatment of the acoustic neuroma are: surgery, radiation, or watch and wait (meaning losing more hearing, maybe loss of balance, dizzyness, facial nerve problems, etc.) The doctor and I chose watch and wait – since I am 69 now, and they do not like to operate on older patients. He said the median age is 71 now. I wish you good luck with your problem. We have to find good and accomplished specialized doctors to help us. If anyone can recommend a great neurosurgeon in central Illinois that has plenty of experience and great results in central Illinois, please let me know. I would like to get a second opinion of my acoustic neuroma soon.

Hi @kkkk,

Welcome to Connect. I’m so glad you found the right group discussion to share your experience. Allow me to also introduce you to @sooter, @wendyt, @annamae1952, @claudia11, @beehale, @alangoldberg, who have talked about acoustic neuroma, elsewhere on Connect.

If you would like to seek a second opinion from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@kkkk, how are you managing the symptoms while you wait for the next MRI?

@kanaazpereira

Hi @kkkk,

Welcome to Connect. I’m so glad you found the right group discussion to share your experience. Allow me to also introduce you to @sooter, @wendyt, @annamae1952, @claudia11, @beehale, @alangoldberg, who have talked about acoustic neuroma, elsewhere on Connect.

If you would like to seek a second opinion from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@kkkk, how are you managing the symptoms while you wait for the next MRI?

Jump to this post

About the only symptoms I have most noticeable is loss of hearing and ringing and clicking in my ears. Otherwise, it is about normal – so far!

@kanaazpereira

Hi @kkkk,

Welcome to Connect. I’m so glad you found the right group discussion to share your experience. Allow me to also introduce you to @sooter, @wendyt, @annamae1952, @claudia11, @beehale, @alangoldberg, who have talked about acoustic neuroma, elsewhere on Connect.

If you would like to seek a second opinion from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@kkkk, how are you managing the symptoms while you wait for the next MRI?

Jump to this post

To mask the ringing and clicking in my ears, it helps to watch TV or concentrate on music or other sound. The loss of hearing is something I have gotten used to. I can still hear with my affected ear, although the sound needs to be louder on that side.

Hi I’m Linda , I was also shocked when the DRS told me I had a brain tumor after a routine exam due to hearing loss on right side. The ear Dr sent me to hospital for MRI and they confirmed it was a brain tumor they thought AN but told me I needed to go to University Hospital in Zurich ( I was living in Switzerland at the time) it was far too complex a problem and it was on brain stem and major nerves so it was urgent. So my nightmare began, tried to get an appointment with ENT responsible for evaluating my situation and taking to board to discuss best treatment. Had to wait 3 months for an appointment! I was shocked and scared so I got on a plane to USA and got appointment with John Hopkins, UPMC and a dr. In Los Angeles, I was frantic, John Hopkins told me surgery to dangerous with all nerves within tumor, thought radiation best option. UPMC thought partial debulk then radiation but warned me my quality of life would not be same. Los Angeles similar. I was even more depressed as I went back home to Switzerland and saw another hospital in Zurich, and his Dr told me I only had a few months and needed immediate surgery that it was a Glioma tumor. I was close to a nervous breakdown then my date came at Zurich University hospital, the board not just one Dr looked closely a all my medical data MRI, CT etc and decided very firmly that surgery not an option definitely to dangerous, radiation not recommended too close to brain stem and nerves they believed more damage to good tissue would be done.
One professor with confidence said he had my solution and he has had grea results in almost all cases like mine. He wanted to do a emolization of the blood feeders to the tumor to try to shrink it and stabilize the growth. Normally Brain surgeons do this before major brain surgery to inhibited bleeding. In meantime they decided I had a non cancerous Meningioma tumor. This procedure was discovered by this Professor who worked with a Dr Fisch who was a world renowned brain surgeon at the University, he found that his patients who came from all over world came for the pre operative procedure and had such good results they cancelled the surgery. These patients became stabile and every year just had MRI to control the growth. After about 20 years of doing this with great success they decided it was a very good solution for tumors like mine where surgery was not a good option. So I had my embolization October 31st, 2012, he closed off all the blood going into tumor and it shrunk about 30% and with every nearly MRI it has been stabil with exception I loss my hearing on right side but this was due to nerves were already damaged before procedure, he told me this type of tumor is slow growing and if it finds new blood feeders and starts to grow he can do the operation again. Told me this was the best solution for me all other options would possibly ruin my quality of life. Now I come to my new problem.
I moved from Switzerland to Ft. Lauderdale 2 years ago when my husband retired, this is now our permanent home. My Dr in Switzerland cannot recommend any Dr in USA because he feels they are all to aggressive with surgery and radiation and can not recommend anyone with his experience in embolization as a stand alone treatment. The Dr must be very gifted to do this procedure and he is but now he is 64 near retirement plus I have had to fly to Zurich to get my MRI and consultation, I desperately need to find a Dr to take care of me here in USA, with Global hospitalization it’s just too complicated and expensive plus I’m scared if something happens and I cannot get to switzerland not having a Dr here would be disastrous. I have not been able to find a Dr with this type of experience I don’t know how to proceed. Please can anyone help me or give me advise. The health care system has is so complicated and after 35 years living in Switzerland I do not have many resources and no family to help me. I would appreciate any recommendations or help. Thank you

Please login or register to post a reply.