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.

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@katfred

I had surgery 4 months ago for acustic neuroma

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Hello:
I has an Acoustic Neuroma removed from my Brain Stem 3 years ago March 10,2014, I still have issues with imbalance due to hearing loss in my left ear from the tumor surgery….Theres good days and bad days…

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@cynaburst

Rose – My AN was about the same size as yours and I had hydrocephalus also. Did you get a shunt for that? I got a VP shunt a week or so before they removed my tumor. Then, I had a 7 hour surgery to remove the tumor. I was very lucky that they were able to remove the whole tumor without leaving any behind. However, I do still have the shunt for life.

I was also very lucky not to be left with serious deficits besides the loss of hearing in my right ear. My surgeries were a little more than 14 years ago, and I am doing great. Very grateful to my skillful surgeons.

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Hey CynaBurst:
I also had Hydrocephalus.And had a shunt in my head until after my surgery. My surgeon removed it before I left the hospital. I have 2 percent of the tumor still on my brain stem. I get yearly MRI to see if its growing…Every surgeon is different, as every tumor is different. Some days are a challenge. Others a Blessing…Hope all is well in your life…

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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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Hello Katfred:
I had No signs at all of having a brain tumor. No hearing loss, No headaches, no imbalance issues. So when I went in and my ent found a tumor. Well shock was not the word I felt. Unbelievable was more like it… Im getting better as far as walking straight and doing more. Ive just slowed down a bit.Im still active, but Ive changed how I do things now…

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@rosesareredmylove2016

Hi Katfred… I was equally shocked when my ENT told me I had a 3.5centimeter brain tumor pushing in my brain stem…. I went to my doctor with an Earache…
I hope all is well with you…???

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Hello Katfred
Yes life changes after brain surgery, thats for sure. Just remember..One moment at a time….I do eye exercises and I do yoga and it helps a lot. I used to run, but ha,ha, when ya run into things , well NOT a good idea..I’m way to a active to let this tumor kick my butt any longer. Ive got 2 % still on my brain stem….
I hope you feel better soon. Try new things, see what works for you…

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@katfred

I had surgery 4 months ago for acustic neuroma

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How are you doing since your surgery, Katfred? What has the recovery been like for you?

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Well.. healing is slow for me and its hard to have to take a step back in life. Some reason my right side of my brain just isnt compensating for left side yet. Learning to be patient is huge for me because i was determined to go back to work right after surgery. I work for Aldi and if anyone has been to an Aldi, ya know we have to work at fast pace and unload trucks. So, because of no light duty there, im off work until i can perform my job. Long story short is. Almost 5 months out and im still hanging in there but im determined to get back someday

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Acoustic neuroma found during an MRI which discovered Hydrocephalis. Brain surgeon implanted a shunt, which took some getting used to. Had a problem with dizziness, lack of balance–but therapy helped. Doc decided not to do anything to the neuroma–just observe, so I still have it, and do feel sharp pain in that area fairly often.
The good part is that my balance is better, am able to exercise, speak logically, and not use a cane. Just have to take life a day at a time and be thankful that we can walk and talk and move.

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I also had hydrocephalus, but mine was caused by my acoustic neuroma. My tumor was so large they told me I had to have it surgically removed right away or it would be fatal. Usually, hydrocephalus only results from an extremely large AN. How big is your tumor? Do they think it caused the hydro, or was the AN just an incidental finding? Where are you being treated?

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Hi Tracey,
I am 65 years old and was diagnosed with Acoustic Neuroma on my left side 16 years ago. The only symptom I had was severe dizziness. A CT scan diagnosed me with the Acoustic Neuroma. I elected to have surgery since my doctor told me my tumor would only get bigger. My tumor was wrapped around my hearing, facial an balance nerve. Two days after my surgery I lost the hearing in my left ear and had severe left sided facial drooping and balance problems. I could not close my left eye and had to wear a eye patch. My facial drooping has improved with reconstructive plastic surgery. I can close my left eye. I have no hearing in my left ear and have a constant ringing which I have gotten used to. I still have balance issues. My Acoustic Neuroma has given me challenges to work though, but I don’t let it keep me from leading a happy and productive life.
Good Luck you…

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The neurologist who performed surgery for the hydrocephalus said that surgery for the neuroma (which is behind my right ear) was very unpleasant and not advisable at this time. He mentioned side effects–said the neuroma was growing very slowly and we would watch it. Since I feel OK, am active and, wear hearing aids–I plan to avoid any more surgery unless he recommends it.

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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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@lindalb

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

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Hi Linda:
Wow Thats some life incident there. I had similar in 2014. I went into my Dr. with an earache. Turned out I needed Brain surgery fora a tumor on my brain stem. Yea….ask me if I was shocked. I underwent a 12 hour surgery, where 3 brain surgeons scraped all but 2 % off my brain stem.
After the surgery I have hearing loss on my left side, and my balance is pretty funky some days. But I’m better than before the surgery.I of course cannot work full time. I am on SSI Dissability due to this surgery. But I am alive and look for new ways too improve my life each day. Quality of Life is NOT what doctors say it is. We as patients make our own quality in life.
My surgeons are at the University of Minnesota… Dr Tumula, and Dr Huong…Wonderful surgeons…..
I hope you find the answers your looking for….

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