ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: BoedyGirl on January 07, 2014, 04:57:40 pm
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Hi Everyone,
I was on this forum about five months ago looking for any advice or even experiences to make me feel better about my AD diagnosis. I had tinnitus, balance issues, headaches occasionally, and would get dizzy every time I turned my head from left to right. I would also feel like I had brain fog a lot especially when I was driving which worried me greatly. I went to a couple different doctors during this time to try to find the cause if these symptoms. One tried to convince me that it was all caused by anxiety and put me on anti-anxiety medication which did help for a little while, but then one day I experienced blurry vision and nausea and went to the emergency room where they ran a CT scan and found my 5.4 cm acoustic neuroma. I was 23 at the time of my diagnosis and was scared as heck about it. They made me wait a month and a half before I could have surgery to get it removed as my neurosurgeon had a scheduled vacation just after I was diagnosed and they didn’t want any other doctor operating on me. This month and a half was awful, but I found comfort on this site and I made it to my surgery date which was August 26th 2013. They removed my whole tumor in an 8 hour surgery (originally they thought they would need to do two surgeries, but it was going so well they decided to make it a long haul) and I woke up later that evening very tired and out of it, but happy for only one surgery. I spent the next five days in the hospital and the day after surgery was the worst of them. The night of surgery they had me up and walking around the Neuro ICU wing and I was impressed that I didn’t throw up at all. The anesthesia must have still been working. The next morning I would get nauseous and throw up every time I stood up and couldn’t eat any food that day without getting sick. They also had a hard time finding the right pain medication combination so I was in a lot of pain for about four hours that morning. After that I was a lot more comfortable as the pain was more manageable and by about day three I was back to eating and crocheting and doing Sudoku puzzles. I had a five inch incision kind of shaped like a long C above my left ear and I could no longer hear out of my left ear, but that really wasn’t as bad as I had anticipated. I had a little bit of tingling on the left side of my face and tongue for the first couple of days, but each day it wore off more. On the day I was discharged I still had a severe headache every time I sat up fully, but they explained that it was due to draining almost all of the spinal fluid I had for my surgery so my brain didn’t move around, and that it would get better over the next few days. My husband drove me home and I spent the next few days lying in bed at home. They were right, after a few days and a lot of caffeine (they recommended this to help with the headaches surprisingly) me headaches were much better. I was up and walking with a walker the day after I got home and was able to take a shower on my own with the help of a little stool I had for in the shower so I could sit down if I needed to. I had about 9 different medications to take for pain and swelling and other such things that my husband organized and set up a schedule for. He was so awesome through this whole thing and helped me with whatever I needed. I ended up being off of work for 8 weeks recovering and the thing that stuck around the longest was being overly tired. I spent a lot of time crocheting during my recovery and started a little charity that I called Boedy’s Blankeys where I crochet blankets for kids at Doernbecker Children’s hospital in Portland, OR which is next door to where I had my surgery at OHSU. I have donated 25 blankets so far and continue to crochet for it now at about 5 months after surgery. I would have to say I am much better now than I was before surgery. My dizziness is gone as well as the brain fog and most of the tinnitus. The hearing loss has been an adjustment, but I am getting more and more used to it. I am doing the Insanity workout program right now and feel much stronger than I did before surgery. I think my surgery was a 100% success and I had no re-growth at my 3 month post op MRI appointment. In fact the small piece they left on my facial nerve had disintegrated. I am living my life perfectly normal now. I wanted to tell my story in hopes of giving someone else on this website a positive story and let them know that it is possible to come out of this with very little side effects.
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Congratulations!!! What great news and you are right... it does give do wonders for others who have been recently diagnosed, making decisions or waiting for their treatment day. Sounds like it was a difficult time but you came through with flying colors!
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Excellent news, and thank you for sharing it!
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I am waiting for surgery and Im sure you understand the anxiety I am feeling at the moment, but it was so good to read you story and hear in detail how you felt after the operation. Thank you so much for taking the time to share it with us. It has given me a lot of comfort, Thank you
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What an inspiring story! Thank you for sharing it.
I'm sure our fellow forumites will want to know: Who was your surgeon at OHSU?
Best wishes,
TW
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My surgeon was Dr. Dogan and my Ear Nose and Throat surgeon was Dr. Warren. Together they were able to remove my tumor and have no lasting effects aside from the hearing loss but there was no way to avoid that and I am getting used to it pretty quickly :)
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Thanks for sharing and it is so great that you are doing so well. I am just over a year post op and had tons of balance and dizziness and the brain fog issues. Those are all gone now. I too completed the insanity program this year. I just started P90X3 and man is it really challenging my core and balance. It is great for making me push myself. In only a few weeks my stability on one leg has gotten so much better! Keep up the great work. Daily exercise is key before and after surgery for helping in recovery!
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BoedyGirl ~
Congratulations on a successful AN surgery and recovery experience! Thanks for sharing it with us. You've likely encouraged many newly-diagnosed AN patients facing surgery. Well done.
Jim
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Thanks for sharing. I am 3 weeks post-op. I know I have a way to go, but appreciate reading your positive story.
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Wow. So great to read such good news. I am scheduled for surgery on May 7th. Thank you for sharing!
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So awesome to hear! I am almost 2 weeks post op and it's encouraging to read all the success stories, and if think I am one as well! I did the Insanity workout before my surgery actually!! It really helped me build the core muscles I needed to help me recovery after surgery. Don't forget to dig deeper!! :)