ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: dufreyne on November 06, 2008, 03:22:40 pm
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First, let me thank all who have so thoughtfully been supportive through this forum. It has been kindly received.
On October 22nd I underwent a middle fossa craniotomy at Stanford with Drs. Jackler and Harsh. I was fortuntate that the surgery was performed without any major complications. The tumor was removed completely.
The post-op phase has been quite an experience. You see, prior to the surgery my vestibular nerve was checked and found to be intact. During the surgery they had to sever the superior vestibular nerve to get to the inferior vestibular nerve where the tumor was located. This was a sudden shock to my balance system. The majority of my post-op challenge has been dealing with the vertigo and trying to regaining balance and nausea. I also have fairly impressive double vision that shows up when I'm tired. It has shown tremendous improvement from even last week and I'm very grateful to be where I am now.
I have very little hearing remaining in my right ear, although the formal testing isn't for 3 more weeks. I have very loud tinnitus in the right ear that can be somewhat disturbing, but I have gotten more used to it as time has gone by. It seems to get louder as the background ambient noise gets louder.
Post-op my facial nerve function deteriorated to a House-Brackman 4/6, but quickly improved over the course of the next 5 days. At present it is a 2/6. I frankly only notice it when I smile wide or when I shampoo my hair (can't close my eye tight so shampoo leaks in).
Thank you to those who previously commented on Vestibular Rehab. I started this on monday and it has been great. I have a series of exercises that I do daily and it really does seem to help. With the help of my father, I built a mini, low, balance beam that I've been using for heel to toe walks and balance while quickly looking in akward directions. Challenging, but good.
I find that my tiredness comes in waves. Sometimes I feel pretty good and just as quickly I feel exhausted. Sometimes I feel like I literally can't lift a finger. I knew that going in, but it has taken on a whole new meaning post op.
I try to walk daily. The first 5 days I couldn't walk without a walker, then I moved on to a 4-pronged cane, then nothing. The biggest challenge, by far, has been the dysequilibrium. Everything moves--walls, floor, objects--constantly. Fortunately, this has truly gotten better, every day. I've tried my best to walk on every surface type at my disposal.
My headache is quite tolerable. After 2 days post-op I had the nurses stop all narcotic pain medications. It was clouding my thought process and making it more difficult to try to walk. I knew I needed to walk ASAP to avoid complications, but between the intense vertigo and narcotics, it was quite a challenge at first. At post op day #3, I went to Tylenol and then nothing. My headache is quite minimal, fortunately.
I was on 4 separate anti-nausea medications for the first 5 days (Scopolamine, Anzimet, Zofran and Reglan). That still didn't cut it. But, day by day, as the vertigo improved, so did the nausea. I've been off all these meds for 8 days now. I still get occasional nausea (usually after I've been doing my vestibular rehab exercises).
So, all things considered, I'm very grateful for a positive outcome to a difficult situation. I knew the first few weeks would be the toughest, and that has certainly been the case. I can honestly say that I feel better and better on a daily basis. I wish to extend my sincere thanks to all those who freely shared their experience with me prior to surgery. It most certainly helped me prepare for, what may prove to be, the most physically challenging episode of my life.
D--
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D -
Welcome to "the other side"! Glad you made it okay. (We knew you would!).
It's a tough road, but as you've already noticed, it gets better every day. Good luck on the balance beam - maybe you'll be ready in time for the next Olympics! :D
Keep that positive attitude of yours - it will help a lot along the road to recovery!
Lori
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Hi Dufreyne,
I have been thinking about you and wondering how you are -- it's good to see you posting! You sound wonderful and have such a great attitude. Don't forget to rest often, or as you know by now your body will remind you. :) The balance beam you and your father made sounds very challenging and whatever challenges the vestibular system improves it. Welcome to the other side postie!
Wendy
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Dr. D,
You have been on my mind. I am so happy for you that you are on the recovery side of this.
Peace,
Marci
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Doctor D:
Congratulations on a successful surgery and what appears to be a typically challenging but very likely triumphant recovery. Your affirmative attitude coupled with your foreknowledge of the possible ramifications of this procedure have combined to give you the best possible attitude for surmounting the deficits generated by the surgery. I believe your account of your AN experience is going to be helpful to others and probably somewhat cathartic for you, in the long run. Thanks for the informative update and please accept my sincere wishes for a rapid and complete recovery.
Jim
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D~
I was just thinking about you today and thinking that we should be hearing from you soon! I'm glad that every day is better & better. Sounds like we are going to have to start Team AN USA for the balance beam for the 2012 Olympics!! ;D
K
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Thanks for the post on your progress and I wish my fellow Oregonian a very speedy recovery. So glad you are coping well and I hope that your recovery is uneventful. We like uneventful and boring around here. ;)
I did not know that there was a superior and inferior vestibular nerve. The things you learn. :)
Take care and don't be a stranger.
Sue in Vancouver, WA, USA
(Once an Oregonian, always an Oregonian!)
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Yay, Dufreyne, please tell me you are on a sunny beach in Mexico now, restoring an old boat. If you are, I will get on a bus and come down and help. :D
I hope your recovery continues to go well, and that you improve every day and every week. Best wishes.
Steve
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D -
it's great to see you back; I've been wondering how things went for you. It sounds like your recovery is pretty much the norm.
I had the same nausea experience as you - lots of it and no meds would make a dent :P Thankfully in time it ran it's course.
I also had the double vision, but mine wasn't related to being tired. I had it continually for 2 or 3 days post op, then it was completely gone.
The fatigue tends to be one of the most unpredictable things and, as you say, it does hit you in waves. You'll get past it in time, but it can take several months.
The daily improvement is also quite typical. After the initial 2 or 3 days post op when I still had the "hit by a Mac truck feeling", I found that I got better each and every day.
Jan
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Welcome Back Dr D
It is really good to hear from you and such a positive outcome so soon after surgery; well done. Your positive attitute really helps me and I imagine all others in W&W who are yet to make it to the other side of treatment.
Good luck with the balance beam and keep us posted with further recovery updates; its always an interesting read.
Kimbo :D
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Dufreyne,
Welcome to your new normal! Yep, you certainly have had to deal with an incredible adjustment since your vestibular nerve wasn't involved before surgery. I like to refer to opening my eyes for the first time as a NIGHTMARE that improved the more I practised my eye focus while moving my head back and forth. Glad to hear yours is improving. It really is quite the challenge and what you feel going on inside doesn't match how you look. I felt a mess, but looked normal. I'm sure you've gotten the "You look great!" comments even though you don't feel great. Welcome to "wonky head" world.
Your facial palsy will improve, but don't be impatient here as nerves (like you don't know) need time to heal.
As for the hearing impairment have your family help you out by facing you when they speak, make sure they don't talk to you from another room, and have them slow down their speech. These tips help keep the "What did you say?, Can you repeat that?, Huh?" to a minimum.
Thanks for sharing your story. This experience will make you a better doctor all the way around.
Keep up the exercises, give in to the fatigue, rest often even 5 minutes of eyes closed, not thinking does wonders. Keep up the fluids, and have a great life!
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Dufreyne,
Thanks for writing all of this out. It's really helpful to hear from people right after surgery. I'm glad that you're doing better now!
Take care,
Kim
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Hey Dr. D-
I'll add myself to the list of people who was wondering how you were doing - thanks for posting! Safe to say that we can all relate to the fatigue issues adn that "mac truck" feeling. I'm very impressed that you have managed to stop using a walker already - determination pays off! Keep healing, and drop in and let us know how you are doing.
Debbi