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 group.

@sarasally2

I was diagnosed with an acoustic neuroma last year and was on a wait and see, this year it doubled in size and ma scheduled to discuss options with doc for radiation or surgery, ENT surgeon refuses to do surgery so I have decisions to make and feel left hanging in the air. Anyone have radiation?

Jump to this post

I was diagnosed with left acoustic neuroma 9 years ago. I had gamma knife surgery at Mayo Clinic in Rochester MN 3 months later. This past Dec. I lost about 60% of my hearing in that ear all of a sudden.
As part of my treatment I have been followed in Rochester every year, then every 2 years, with follow up MRI’s and exams. They tell me I was lucky I didn’t lose my hearing sooner. Currently having some headache, tinnitus and vertigo issues. Will be looking into hearing aid for left side soon and possible cochlear implant. I can’t say enough good things about care at Mayo, MN. Putting off treatment does not sound wise to me.

REPLY

It looks like I am late to the party in joining connect. If, however, anyone is still following this discussion, I wanted to contribute my experience. I had two small acoustic neuromas diagnosed in 2006. Both were treated with gamma knife surgery to preserve excellent hearing. In 2013 a spinal tumor was removed surgically and the neurosurgeon told me I had several “nuisance” tumors (tiny and likely not to present major problems, as they are slow growing.) for five years, I participated in an NIH study which merely monitored the growth and development of symptoms. No interventions were factored into the study. Fourteen years since the gamma knife surgery, my hearing is still in tact, although recently I’ve experienced increased balance problems. Every day is a gift. My father, two uncles, aunt, two sisters, three cousins and their daughter all had or presently have NF2.

REPLY
@mmm

It looks like I am late to the party in joining connect. If, however, anyone is still following this discussion, I wanted to contribute my experience. I had two small acoustic neuromas diagnosed in 2006. Both were treated with gamma knife surgery to preserve excellent hearing. In 2013 a spinal tumor was removed surgically and the neurosurgeon told me I had several “nuisance” tumors (tiny and likely not to present major problems, as they are slow growing.) for five years, I participated in an NIH study which merely monitored the growth and development of symptoms. No interventions were factored into the study. Fourteen years since the gamma knife surgery, my hearing is still in tact, although recently I’ve experienced increased balance problems. Every day is a gift. My father, two uncles, aunt, two sisters, three cousins and their daughter all had or presently have NF2.

Jump to this post

Hi @mmm, welcome to Mayo Clinic Connect. I'm a little late too. I'm really glad you found this group and shared your experience. New people come to the forum everyday and hearing stories like your helps.

I'd also like to invite @sarasally2 @ruby1west @janoh @vickid117 @rosesareredmylove2016 and @kimb61 back into this discussion. @ellene also has NF2.

MMM how often are you monitored? Are you still taking part in the NIH study? How are you managing the balance issues?

REPLY

Yes, I have NF2, but so far I have only had the bilateral Vestibular Schwannomas. Not that those two tumors aren't enough. I am 56 and was diagnosed just a little over a year ago. I have been looking for support groups for people with bilateral VS, but I haven't found one. There are many for unilateral, but not that I have found for bilateral. Given the only tumors I have had with NF2 are the Vestibular Schwannomas, I don't feel like an NF2 support group would be the right fit either. While I am not necessarily needing emotional support, I know that there are others who have been where I am and there is no need for me to reinvent the wheel, so to speak. I am mostly looking for support in terms of services and technology. I had Gamma Knife on both tumors 2 weeks ago. The disequilibrium is much worse since gamma knife. I have lost almost all of my hearing in my left ear over the last year or so and have fairly good hearing in my right ear. My doctors have all said I have a pretty good chance of losing all of my hearing, but that I would likely be a good candidate for cochlear implants down the road. I will have another hearing test and MRI in 6 months.

REPLY
@colleenyoung

Hi @mmm, welcome to Mayo Clinic Connect. I'm a little late too. I'm really glad you found this group and shared your experience. New people come to the forum everyday and hearing stories like your helps.

I'd also like to invite @sarasally2 @ruby1west @janoh @vickid117 @rosesareredmylove2016 and @kimb61 back into this discussion. @ellene also has NF2.

MMM how often are you monitored? Are you still taking part in the NIH study? How are you managing the balance issues?

Jump to this post

I was on a wait and see but unfortunately it doubled in size this year and with the covid 19 thing I can't do the gamma knife right now. I try to work on the balance thing everyday at home. I haven't left the house since the first of March when I went to Duke. Anxiety levels are high.

REPLY

I am close to Duke so have been going there. Have had vestibular problems for years and finally got an MRI with contrast and found a small AN so they said because of my age, 74 and health conditions just to forget about it and get another MRI which I did and it doubled in size so they sent me to a radiation oncologist, also after seeing many neurologists for vestibular migraines which none of them knew much about them. I was scheduled for the radiation treatment but canceled because of the virus. I have black outs and with many symptoms and spend several days in bed. I am afraid to have radiation and make things worse. Has anyone had vestibular migraines and a tumor?

REPLY
@vickid117

How would I join your group? I had an AN removed 6-8-2018. I just celebrated my year anniversary. I had my surgery at Johns Hopkins Hospital in Baltimore, Md. I lost hearing in my right ear. I have hearing aides now. The one hearing aide tells my other ear what it hears. It is very challenging some days. I am thankful to come through the surgery, and also for the challenges I endure daily while still being alive.Balance and headaches seem to be the lasting symptoms that come and go.My name is Vicki.

Jump to this post

Hi all. I am coming up on my 2 year anniversary on 6-8-2020. I've noticed more headaches and dizziness from sudden movement. The barometric pressure has a big influence on my brain. Bad weather days makes for bad days for me.Being around several people make it difficult to hear what people are saying. Many conversations are not heard therefore I don't participate. Sometimes I have to tell customers to repeat what they say.It can be frustrating to them and me. The area where incision was is still sensitive 2 years later. I try to be upbeat but there are days when I long for what I used to have. Hearing in both ears and no balance issues. I'm thankful to still be here. Anyone else out there still have struggle days?
Please don't let me scare or discourage anyone who may be facing An Acoustic Neuroma surgery. It was challenging during rehabilitation and daily living. Through it all it was worth everything I went through to still be here for my adult Son and Daughter. I miss my husband but I know He is watching over me from Heaven.

REPLY
@vickid117

Hi all. I am coming up on my 2 year anniversary on 6-8-2020. I've noticed more headaches and dizziness from sudden movement. The barometric pressure has a big influence on my brain. Bad weather days makes for bad days for me.Being around several people make it difficult to hear what people are saying. Many conversations are not heard therefore I don't participate. Sometimes I have to tell customers to repeat what they say.It can be frustrating to them and me. The area where incision was is still sensitive 2 years later. I try to be upbeat but there are days when I long for what I used to have. Hearing in both ears and no balance issues. I'm thankful to still be here. Anyone else out there still have struggle days?
Please don't let me scare or discourage anyone who may be facing An Acoustic Neuroma surgery. It was challenging during rehabilitation and daily living. Through it all it was worth everything I went through to still be here for my adult Son and Daughter. I miss my husband but I know He is watching over me from Heaven.

Jump to this post

I have all those symptoms and I haven't had the gamma knife surgery yet and I was told it wouldn't change anything as far as symptoms go but it should shrink the tumor. I am petrified to get worse then I am right now. I have been like this for several years but getting worse as I age.

REPLY

Tracy, just wondering if anyone on this board has had yearly MRI'S after having an acoustic neuroma tumor. I have had 1 each year to make certain it doesn't come back. I'm due for 1 for this year. Just wanted to get some input from others to see if it is necessary. Thanks for any help. Wandered what others were told after their removal.

REPLY
@vickid117

Tracy, just wondering if anyone on this board has had yearly MRI'S after having an acoustic neuroma tumor. I have had 1 each year to make certain it doesn't come back. I'm due for 1 for this year. Just wanted to get some input from others to see if it is necessary. Thanks for any help. Wandered what others were told after their removal.

Jump to this post

Good question about MRI follow-up, @vickid117. How often and for how long one needs follow up MRIs for an acoustic neuroma will vary from person to person depending on the patients and the size and status of the tumor, and other factors. I'd like to hear from @sarasally2 @ellene @annedodrill44 @spurcey1 @dd300 @saucy @rosesareredmylove2016 and others in this group and hope they'll share their follow-up plans.

Vicki, since your surgery was only 2 years ago, it makes sense to me that you would have a yearly follow-up. I would certainly ask your team how long they expect that you will need yearly follow-up. When is your next MRI?

REPLY

I was diagnosed 3 1/2 years ago after noticing that I could not hear as well in my right ear. That was the only symptom I had. After much research, I opted to have a suboccipital craniotomy to have it removed. The surgery lasted 8 1/2 hours long and went extremely well. I bounced right back, much to the doctor's surprise and was doing quite well until the headaches began. And t hey continued to come more often and with greater intensity to the extent of being bed-ridden. I met with several doctors and tried several different medications with not much success. Dr. Cutrer at the Mayo Clinic in Rochester, MN was my savior. He knew exactly what to do for the headache I was experiencing (many doctors had treated it as a migraine). A combination of two different drugs has gotten my headache down to a level 1, 2 or 3 each day. On the days when it is worse, I take Naproxen which works wonderfully. I have had an MRI every year since and believe that now I will have one every 5 years.

REPLY
Please sign in or register to post a reply.
  Request Appointment