ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Lesliegc on August 08, 2011, 05:52:28 pm
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Just wanted to give a brief update on my progress. Had my middle fossa surgery at HEI in LA with the mucho fabulous team of Drs. Friedman and Schwartz, on Jul 25. Discharged on day 4, flew home to Vermont yesterday. All of the tumor came out. I have a small bit of facial weakness that should fade--I can't really see it. My hearing is almost what it was pre surgery (14% below the other ear). Today was my last steroid dose THANK GOD because the hardest part continues to be the relentless insomnia in the wee hours. For me, I have only slept about 4 hours a night on this stuff. So, being simultaneously exhausted and wired is physically and psychologically confusing. I do take an attivan some nights just to try and slow the engines a bit. By and large, I am doing really, really well. I feel still wonky headed, but functionally can walk steadily most of the time. Still a bit tentative with big head movements. Still have the nasty avante garde chamber orchestra sawing away in my ear at night when I lie down but I don't notice it most of the day. I take a lot of short, slow walks, and am doing a gentle yoga practice every morning. Taking the doctor's order to not bend forward or exert myself to the point of any amount of strain absolutely seriously, because I never, ever want to develop a csf leak and have to go through the whole general anesthesia thing again. The incision is purty (I almost thing I should tattoo it purple...Dr F is a champion of women and shaved only the thinnest line so you have to hunt to see it). The incision in the belly not so pretty, but i understand it will flatten back over time. And, though I am waiting to crash once the half life of the steroids is done, and maybe then depression will hit like a ton of bricks, I am for now in really good spirits. The smartest thing I did was to gather as many sources of loving friend and family support around me through this whole thing, set up a caring bridge page, and then take everyone up on their offers to help when I came back. It's worth telling your story over and over to people, even if you think it is boring, because it feels like the best medicine to have all that love holding you up. So, if you are preparing for surgery, the advice I would give is to take the best possible care of your physical health leading up to the surgery. Eat well, rest, exercise, and make sure the people who love you know what is going to happen, and just how much their support and communication and love and feeding you will help you with your recovery.
Leslie
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Hi Leslie - It was great reading your post. Im glad your are doing well! I am up for suregery in Sept. Thanks for the words of wisdom and inspiration. I hope you have a speedy recovery!! :)
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Leslie,
I will have my 3mm x 3mm tumor removed at UNC soon. I am waiting to hear on my surgery date, but they tell me it will be in 2-3 months. While I know anything can happen, it is reasurring to hear that you are doing well. Good luck on your continuing recovery!
~Heidi
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Hi Leslie,
Glad to hear you are doing well. The steroids will wear off and you will be getting some sleep, it just takes a little while for you body to get rid of all that stuff. I had the same problem, but I'm used to working midnights so being up half the night and day was almost my usual routine! A support system is a must and you are doing all the right things. You have all your friends and family helping, that is totally awesome. It doesn't get much better than that. You are Blessed. The noise in your ear will lessen with time as the swelling goes down (inside your ear), but in my case, it never totally went away, but it is very tolerable. Continue to walk and do your yoga, it all helps. I didn't drive for a few weeks after I got home because as you say big head movements were just a little too much and everytime I got to a stop sign, it was back and forth with my head and my brain couldn't catch up. It eventually got better and I was driving before I went back to work. Your doing great and I wish you continued success with your recovery. Ann
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Leslie,
Thanks for updating! I do agree with your advice about letting people know what you are going through. It is very therapeutic for one. Also, as I am sure you have already found, it is very hard for others to understand. With the benign (thank God) diagnosis, many folks think that once the tumor is out, surely your life will be normal in a couple of weeks. Explaining wonky head ;D, why one ear is not as good as two, etc etc is difficult. I do actively share my experiences, not for people to feel sorry for me, but just to be understood.
I am so happy you will be off the steroids soon and will be enjoying some much deserved sleep!
Most of all, be patient with your healing...physical and mental. It can be a bit of a rollercoaster. Over the nexts weeks and months you will look back and be amazed at how things have improved. I found it helpful to make a short and long term goal list that included physical and emotional goals. The short term (2-3 months post op) were things like: getting comfortable washing/massaging my incision, walking up stairs with my son, increasing the distance and frequency of my walks, writing in a journal, riding a bike... Longer term were things like driving further distances, running a 5k, trying to go back to work and so on.
Best of luck with your amazing recovery! Keep spreading the postive message!
Kris
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Leslie .....
So glad all went well and you are back home again. The rollercoaster being on steroids is, indeed, a bit trying on one's patience, but it will soon be over and hopefully a distant memory in another week.
Rest, walk, rest, walk, rest, etc.
Stay with us and let us know how you are doing.
Clarice
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Hi, Leslie ~
Thank you for that very affirmative update! You have a superb attitude and of course I'm delighted to learn that the surgery went well and your recovery is, too! No advice because you seem to definitely be on the right track. Just keep healing and 'paying it forward'. :)
Jim
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Hey Leslie! Glad you are now comfortably in postie-land! I am glad you are doing well, just keep listening to your body and you'll be just fine! Good luck and keep us update!
Jay
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Hi Leslie,
Exciting to see you on this site in such a short time. I had a middle fossa 9 1/2 months ago.
I found that I suffered from fatigue the first few months, so don't be discouraged if that should
happen. Your body is just healing. keep us posted.
God Bless !
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Well-timed response! Hit a wall of exhaustion this morning...been expecting it, coming off the steroids. Thank you for the reminder that it is part of healing. Amazing how hard it is to accept that at times I must lie down and sleep, even though I know it mentally. Hard to acknowledge the fragility, but a good reminder that the body has its own wisdom, and to listen.