ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: lrobie on September 25, 2012, 09:36:38 am
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Hi Forum Friends,
Let me start out by saying I put this post in Post-Treatment because it fell into different categories. Last week, I was beginning to wonder if the wonkiness in my head was something just I was experiencing. I would share that I felt either like a bobble-head, under the influence or just wonky. But I never really knew if what I was feeling was what others were feeling too. I then ordered the Improving Balance booklet from the ANA. The booklet arrived in the mail on Friday. On Saturday, I decided to read it.
All I can say is that I was so elated after reading the booklet. I couldn't figure out why no one has explained why we feel wonky. It was chalked up to being off balance. I tried to explain to my physical therapist that my balance seemed fine, but my head was bobbling around. They looked at me like I was an alien. Even my friends and family would get this puzzled look on their faces.
Okay, so here it is in a reduced version from the booklet. The vestibular system(VS) in the inner ear is responsible for detecting movements of your head through space. When you turn your head to the right, your VS on the right turns "on" and tells your brain of the movement, and the VS on the left turns "off" so as not to confuse your brain. While turning your head, your brain moves your eyes the exact same speed as your head in the opposite direction so your eyes and head are moving as one, keeping your gaze stable. This is referred to as vestibular ocular reflex (VOR). After removal of (or while the tumor is pushing on the vestibular nerve) an acoustic neuroma, the VOR loses its accuracy. As long as the head is moving slowly, the visual surrounding environment stays still. If the head is moved quickly, the surroundings slip a bit. It is as if the visual world does not move quite as quickly as the head and has to catch up.
After acoustic neuroma removal, people tend to use their vision as the primary mechanism for balance. This is where I felt like my balance was fine. When this occurs, you need to start doing things with your eyes closed or on uneven surfaces. In order for recovery to be complete, the VOR needs to be made as accurate as possible. Going through vestibular/balance and gaze stabilization therapy helps to regain this. However, a person needs to challenge themselves by making themselves feel dizzy or off balance. Your brain needs to be challenged and a correction made over and over again. Your brain then develops a strategy of correcting the balance problem. Just don't overdo it!
Lastly, I was under the impression that with my left vestibular nerve cut, my right vestibular nerve would compensate. According to this booklet, after your nerve is cut on one side, the other side is shut down to make the two sides more similar. As a result, there is little activity of the inner ear system to direct the eyes to move in a perfectly coordinated way with the head. As you go through vestibular therapy, you should use your vision and proprioceptive senses less to bring your vestibular system back to being the primary mechanism for balance.
I would recommend to all of you who are experiencing the wonkiness feeling to order this booklet from ANA. It will only cost you $3.00 and is well worth it.
Have a great day!
Lisa
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Thanks Lisa ~
I'm pleased to learn that the ANA booklet on balance was a big help to you. Your condensed explanation of how the vestibular system works and why AN patients can experience 'wonky head' is appreciated. I hope others will take your suggestion to buy the ANA booklet for even more information. :)
Jim
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Thanks Lisa. The ANA articles are excellent as well and can be downloaded for free by members. I wish I'd found them before I had surgery but they were all worthwhile reading afterwards as well.
Karen
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Thank you for explaining the heady feeling some of us have to carry around. A question-
Are these exercises hard work? I'm worried if I don't do them correctly after surgery, I'll be wonky forever. I am actually looking forward to surgery to eliminate the fullness in the head feeling and the "wonkiness."
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Millie, you will know more about how you feel and what may or may not help after your surgery. I would not over worry about it now. I have never did any vestibular rehab. I just made sure to keep walking, plus moving ones head. I found outside was where I was the most off balance. The brain will need it's own time to learn to compensate for that other side. You may notice if you don't keep something going that you might have some more off balance times. I can tell in winter when don't get out like usual that my balance is off more. The time before surgery is nerve wracking enough and try not to make it harder on yourself than you have to. Once you see how you are doing,then you can decide in time and with your drs help what may or may not be needed. I wish you well. Cheryl R
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Hi all
I did all of the exercises with a physiologist with the help and guidance of my ENT and thought it helped at the time. I kept practicing up to my last surgeries (12/7 and a hip replacement) but found that I was worse than ever.
I also know that everyone is different and handles things differently so it's hard to compare to each other sometimes.
What I did that made me feel a lot better was to accept it all. The whole kit and kaboodle from wonky head to wonky eye and everything in between.
All I hope for is more people try this book and keep at it as I know the exercises worked for me, for some time.
Hugs to everyone.
Suu xxoo
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Thanks, everybody. I will try to take it one day at a time.
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I ordered this book a couple of days ago (thanks to this post ;D) and am looking forward to reading it. I am still wonky as all get out. The balance seems to have improved but my head :o seems to have turned into a permenant bobble head. I can walk probably 25 ft without touching a wall or falling off balance. I tend to have a fast gait anyway so when I do my "therapy" at work, walking fast and moving my head from side to side makes for an interesting show.
I try to explain to people who tell me "oh you look normal now" as to what my head feels like. Some give me a look like they don't believe me. It's frustrating to have to explain myself over and over. It's been 4 1/2 months since the translab--I want to move on already!!
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Thanks Lisa! It's helpful to hear others who are further out from treatment still have these symptoms. Does anyone feel normal now?
Karen
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There are some days that it feels worse. Like my head is very heavy. I'm not sure if it's weather-related or what, but I don't like it!!
Lisa