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Sep 8, 2019 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor

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!