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

it has been a real struggle, when the neurologist found it he had me look at it and he said "there it is, you have been mistreated for so long I fear you may start to believe it so don't give up" Then I went to see a neurosurgeon who said my symptoms weren't from the tumor, then I saw the actual surgeon who does the surgeries and he said I needed surgery and sent me to the ENT surgeon who works with him and he said no way are we going to do surgery, not that I want surgery but this being tossed around is crazy so then the neurologist sent me to another ENT at Duke for a second opinion and he looked at the reports and said I agree with the other docs, OMG so then they sent me to a headache specialist who was a resident and she had to keep running out to ask the doctor what to do. Validation is so important to your well being. I ask if the tumor is only causing the hearing loss then what is causing the dizziness, facial numbing, nystagmus, vertigo, left sided skull pain shooting down my neck and chest, dah Then there is the forgetting what you are saying right in the middle of a sentence and the terrible fatigue from feeling like you are in a rocking boat.

@sarasally2 you mentioned that you're concerned about traveling with a brain tumor. Are you worried about flying in particular? I thought you might be interested in these discussions:
- Heading to Mayo Clinic. Anyone flown with a brain tumor? https://connect.mayoclinic.org/discussion/heading-to-mayo-clinic-hoping-for-solutions-anyone-flown-with-this/
– Is it safe to fly with a brain tumor? https://connect.mayoclinic.org/discussion/is-it-safe-to-fly-with-a-brain-tumor/

Naturally, I support the idea of seeking a second opinion at Mayo Clinic. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

It starts with simply a phone call and then you can decide whether to seek the second opinion or not.

I write the following for two reasons: first, to warn those of you thinking of having a sub-occipital craniotomy that the headache risk is real and second, to encourage you to visit the Mayo Clinic if you are suffering and need help. The care I receive there is amazing and even if you must travel from afar, it is so worth the trip!

In mid-2016, due to hearing loss in my right ear, I went to an audiologist who sent me for an MRI revealing an acoustic neuroma, a tumor by the auditory canal near my brain stem. After researching my options and meeting with several doctors, I opted to have it removed via a sub-occipital craniotomy (retrosigmoid). I was warned of the risk of a headache that comes with this particular surgery but having never suffered from regular headaches except an occasional sinus headache, the doctor thought my risk was low. Other options included radiation (but chances of not removing all of the tumor were high) and translabyrinthine (going through the ear resulting in complete hearing loss in that ear). I also could have waited and reconsidered my options at a later time, but I was fairly young (53) and healthy and my hearing loss would most likely worsen.

In March of 2017, two surgeons from a local well-known hospital, performed the surgery and successfully removed the tumor; it took 8 hours. I came out of the surgery so well. I was practically walking on my own (albeit very slowly and while holding onto someone) and discharged after two days. I was fortunate in that I had no facial droopiness and my hearing in my right ear remained the same as pre-surgery. Over the next few months I continued with physical therapy and returned back to work with only an occasional headache and dizziness.

By that fall, I was struggling with a never-ending chronic headache. I met with one of the top headache specialists and over the next 8 months, I tried various drugs looking for relief but the side-effects of many were intolerable and the relief minimal. This doctor was treating my headache as a migraine, which it was not. I was often bedridden and nauseous, and unable to go to work. Frustrated and discouraged, I called the Mayo Clinic in Rochester, MN in hopes of getting an appointment with Dr. Cutrer, who was recommended to me. I was put on a waiting list and much to my surprise received a call three months later asking if I would like to make an appointment!

In June of 2018 I met with Dr. Cutrer. It was so refreshing to meet him and find that he was very familiar with the surgery I had had and the risk of a headache that comes with it. His first words to me were ‘I know how miserable you’ve been and I’ve had success treating similar patients with a couple of different drugs’. These drugs have taken my headache from a level ‘8’ or ‘9’ (on a scale of 1 to 10) to between a ‘1’ and ‘2’ each day. I will return to Mayo Clinic later this month to see if there is anything else I can try to get me to a headache-free day.

Please let me know if any of you are struggling with this type of headache. I would love to hear from you!

Hi. I have had the surgery to remove my AN.. It was in June 2018. My tumor had grown the year I was caring for my husband.After he passed I went for an MRI. The tumor had grown and radiation was not an option. I lost total hearing in my right ear. Went for Vestibular Therapy. I had trouble swallowing and couldn't pass the swallowing test. Had to have all my food pureed for over a month and a half. Taught myself how to swallow. Couldn't get rehab for this. My insurance stated I would have had to have a stroke for it to be covered. I was in hospital for a week. There were and still are times when daily functioning are a struggle. I am thankful for no paralysis in my face. Headaches are frequent and weather changes affect my head. The barometric pressure is a real problem.The incision area is still sensitive even after 15 months. I have Phonak hearing aides. They can be challenging to use. I hear things but don't know which direction they are coming from. The fatigue is real. I just take it easy now and don't push myself. There is always tomorrow to do things.Would I go through this surgery again? Yes and No. I wouldn't have traded the time I had with my husband. I would have loved to have preserved my hearing. A small price to pay but in the end I wouldn't have traded that year with my husband. I have learned don't take life for granted. We are not promised tomorrow. Best wishes to anyone dealing with an AN. Don't give up. Anything worth having has to be worked for. I would love to hear from anyone who has had the surgery and how they are coping with this new way of life. A year in and still coping.

I have bilateral vestibular Schwannomas with neurofibromatosis type 2 (NF2). I was diagnosed with the schwannomas in February and NF2 this summer. The "dizziness" is affecting my quality of life now. The hearing loss to a lesser degree. For the most part this doesn't get me down, but I do have days when it gets to me. At this point we are watching the tumors, with the hope that I won't need surgery. I wonder though, at what point down the road will the risks of surgical intervention outweigh living with the symptoms that are causing my quality of life to deteriorate. It seems there are no easy answers. I am just hoping that I will, with the help of my doctors, know when to do what.

Lol yea 1 in 100.000 and I got one.

I have spent too much time doing the wait and see, can't leave the house because the dizziness is so bad, no more driving, muffled hearing, gaps in memory,etc all garbled up with migraines/vertigo. I feel like a circus show because the docs have only read about this and never have seen a patient. I think I am going to try to get to a Mayo clinic and see what they have to say.

I am so sorry that you are dealing with such horrible symptoms. If it were me, I would most definitely get to Mayo or at least to a doctor who has some expertise in these types of tumors as soon as possible. One of the hardest things we have to do when we are sick is advocate for ourselves. We have to be strong and fearless in the face of crippling symptoms and doctors who are supposed to know more than what we know. Another resource, if you haven't already been in touch, is the Acoustic Neuroma Association. They might offer some support. I will be wishing you the best.

Hi. I live in Columbus Georgia. Recently diagnosed with a 5 mm AN

How did that go for you? I was just diagnosed and am seeing someone at Mayo. I am scheduled to have surgery Nov 15th