Hello everyone,
This is my first post, though I have found the information on this site to be invaluable. Quick background - I was diagnosed with a 3cm tumor in May 2018 at the age of 33 (when i was 36 weeks pregnant). I had surgical resection 5 weeks post partum with Dr. Michael Sisti at Columbia in NYC. He was able to remove 95% of the tumor by volume at the time, and aside from some post-op issues with major allergic reactions, the recovery was fine. I lost hearing fully in my right ear, have very bad dry eye, but I experienced no facial paralysis, and was walking on my own 10 days post surgery. My 6 month and 12 month followup scans showed stable tumor size and nothing noteworthy (at 12 months my tumor measured 17x14x14 and was 1.6cubic cm). At 18 months, my doctor ordered an off schedule MRI because I had been complaining of increased facial numbness (the first symptom I presented with) and increased gritty dry eye feelings. The MRI revealed that my tumor had rapidly regrown and was now measuring 21x24x17 and had doubled in volume from my previous MRI (4.1 cubic cm), obviously causing concern and needed to be acted upon. My doctor thought Gamma knife was the better way to proceed vs a second surgery ( I assume this was to better protect my facial nerve) and so I went ahead with the procedure on January 29, 2020. 2 weeks post the procedure I developed very bad side effects --extreme fatigue, headaches, light headedness, dizzyness, numbness radiating to my extremities and I was put on an aggressive 10day course of Decadron which helped the symptoms. I started working from home (1 month before shelter in place took effect) and rested as much as I could. March and April were therefore pretty uneventful symptom wise, and I was able to resume life as best as I could - walking every day with my husband and resting as much as I can (with a 2year old!). The fatigue has been incredibly overwhelming I have found. Fatigue that isnt really cured by rest, but I have tried to "power through." At exactly the 4 month mark, i began developing facial twitches, most cumbersome around my eye. It is incredible frustrating especially when it attacks my upper lid. The lower lid, cheek, mouth is more mild and manageable. These have been going on for 3 weeks now, and I am very frustrated, and I dont know how long I should try and bear these symptoms before pursuing other alternatives (botox etc). My doctor put me on 2 rounds of Medrol dose packs which I have completed, and they seem to have done little to help mitigate the twitch. I also take 600mg Gabapentin a day, and to deal with my insane anxiety ahead of my upcoming scan I take a very low dose 0.25mg of Xanax as needed. My scan is in exactly 6 weeks and I am so nervous. I am petrified of radiation not working, though I know it has an 85-90% chance of success, and I have read many success stories on this forum, even with the bigger tumors like mine --> 2.5cm. Any words of encouragement or tips on how to cope with the stress of the upcoming scan and my increased symptoms would be greatly appreciated!
Many thanks,
Sara
