Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

i was diagnosed with this last week. I was taken by my husband to an ER after 2 days of nausea vomitting and balance problems. No fever so Dr there did a neuro test then sent me for a ct scan. A mass was detected so an MRI was done and they found it. It is around 2 centimeters. I followed up with my doctor and she prescribed gabapentin and prednisone and referred me for a 2nd MRI and a neurosurgeon and neurologist. i am feeling a little better with the meds but am concerned about how to have the mass removed. I don't want surgery if at all possible.

Hello @rose4622 and welcome to Mayo Connect,

As you read through the posts under this discussion you will find many Members who have this diagnosis. Some have had successful treatment with surgery and others have not chosen that treatment option yet. You are wise to educate yourself about this matter. If you are an educated patient you are best able to advocate for yourself. With that in mind, I found a link to an article on Mayo's website about treatment options for acoustic neuroma. I suggest you read this so you have as much information as possible, just click on this link, https://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/diagnosis-treatment/drc-20356132

I'd like to invite some of our Members who have recently mentioned this disorder, @dnonnie @bomashisha and @dgosney23 to join in this conversation.

@rose4622 How long before you see the neurologist and neurosurgeon and where will you be treated?

Teresa

Dear Rose4622, my tumor was found after a visit to the ER because I had fallen, broken my arm, and hit my head pretty bad. They referred me to a neurosurgeon and I was scheduled for an MRI. After the MRI, I saw the neurosurgeon and he told me about the meningioma. I've had balance problems for about two years now, but only a little nausea, no vomiting. I do have minor headaches as well, a few bad headaches, and some eyesight problems. I am not sure these symptoms are part of the tumor. I am scheduled for a second MRI on August 3rd because the neurosurgeon told me the tumor is close to where a major artery runs through my brain. They will do a two-part MRI, first to check if the tumor is growing and second to see if it is altering the blood flow. The neurosurgeon told me that if the tumor is growing, I may have to have radiation. I've read here where some folks have had gamma knife radiation with success, but I have not researched that yet. Also, I'm with you as far as surgery is concerned, but I would probably seek a second opinion if surgery is recommended. I wish I could offer you more information, but this is all I know about it so far. I want you to know that, I, too, am concerned about having to have surgery, so I can understand your hesitance. Please let us know how you are doing and the results of your meeting with a neurosurgeon. I hope this helps a little, and please know there are many of us here to support you.

You (like me ) may have no choice once it interferes with your balance and motor skills. No one wants to have brain surgery even saying it can be devastating but it will give you back a quality life. It was not easy but would do it again if it meant a good quality life.

Hello @rose4622 and @bomashisha. I would like to add a welcome to Teresas and add that you may be interested in this video I just recently came across with Mayo Clinic ENT surgeon, Dr. Matt Carlson where he talks about acoustic neuromas. https://www.youtube.com/watch?v=scaHl42LhBo. I found it informative.

Do either of you have a team of ENT surgeons and Neurosurgeons that regularly operate and see patients together?

I wrote on here after my AC diagnosis. My AC was discovered about three years ago. It was around 5 x 11 mm, and my ENT suggested waiting and watching. Over many years I have lost 30% of my hearing in my right ear. After two MRIs, so far, there has not been much growth, and just ringing in ear, itching, and a few balance issues, I am supposed to get another MRI next spring. If symptoms get worse and growth gets too large, it is either surgery or radiation. Since I am now 70, it is recommended I have radiation, not surgery. There is a really good video on UTube.com/acoustic neuroma by a California doctor about AC.

My 2nd MRI is scheduled Aug 8 and I see a neurosurgeon Aug 31. I googled his profile and saw he has been practicing 14 years. Don't know how many Acoustic Neuroma patients he has treated. That will be one of my questions. My biggest concerns with surgery is with anestesia. I am so allergic to so many drugs and in 2012 I almost died from MRSA that I contracted in an ER. The road back was so hard. I was in a rehab for a month and 6 months in a wheelchair. I have never fully regained my strength in my legs. Current symptoms are tolerable. I lost most of my hearing in my right ear 2 years ago and get by OK with hearing aids. I still use a cane so it helps with balance. Headaches and nausea are treatable. I am 68 years old and want to enjoy a few more decent years with my hubby and do some fun things. I don't want that taken away by treatment complications. I will listen to treatment options but will be very cautious. I know my body and what it can tolerate pretty well. Thank you all for your responses. Will continue seek for the best options for my possible recovery from this illness.

Hello @rose4622

Given your past medical history, I can certainly understand your concerns and hesitancy to have surgery. One time, I was also the victim of an error during surgery and for several years, it kept me very anxious about hospitals in general.

Your approach of asking questions about different treatment options is very wise. Please remember, that a second opinion is always appropriate and encouraged. It is important that YOU feel at ease with the doctor and the treatment plan.

Just a few thoughts for you, I also had problems with anesthesia at one time and I was very intentional to get a copy of the anesthesia records that showed exactly when the problem occurred during surgery and what drugs were used. Have you done that? If not, please consider doing so. At that time I had some heart rate problems during a surgical procedure and everytime I had surgery at a new facility, I handed them the report and asked them to be on the alert for any problems. It helped the anesthetist to be aware of the previous problem and to be prepared (it also made them aware that I was a proactive patient - always a good idea!).

Regarding your concern about the past history of MRSA. I would be sure to use some research tool on the internet (or by asking the doctor or hospital directly) which hospital in your geographical area has the lowest infection rate. I live in SE Michigan and from different reports I found that Univ. of Michigan had the lowest hospital related infection rate so I choose to have surgeries there.

I realize that this all takes a lot of work and effort, but if you do decide on surgery, this will best prepare you for the experience and help you to feel most at ease.

Teresa

Hope your visit helped ! I was back driving in 8 weeks , and back to part time working at a computer desk job in 8 weeks I was not able to return to my full time job yet due to the standing , and multitasking as a high school school nurse of 1600 students . If you are young you may bounce back even quicker ! You will realize everyone recovers differently I am in Vestibular PT and it had really helped a lot .

Thank you for sharing your experience with gamma knife. I think I would prefer it to surgery. Did you have any drugs to help calm you for this? Anxiety is a big problem for me.