I wondered if anyone could answer a question for me.
I have a 8mm AN on right side. My hearing is completely gone on that side and my taste is gone except for a small patch on the back/left side of my tongue.
I have been going to vestibular rehab therapy for balance, but so far I don't see any improvement. I am walking around in a haze, feeling like I am drugged, finding it very hard to think straight or focus attention. All of my doctors keep focusing on my balance issues but they don't seem to understand the way my head feels 24/7 when I try to describe it to them. My question is: Does anyone else have this same feeling head, along with the balance issues? And if so has anything helped to get rid of it or is this just another symptom of the AN?
I am so depressed because I can't do much of anything. I am out of work on short term disability and am basically a prisoner in my own home.
Written by
wwoodward49
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When I was first diagnosed I went into myself and with similar side effects to you it was easy to let them take control.
The best advise I received was from the doctor who told me not to be afraid and to push my limits.
Easy said but I try not to give in. I have the blue tooth hearing aids that have helped sound and balance( a little)
I'm not a yoga person but take on board things like my balance. Before getting up from a seat (not just getting up ) I look ahead to focus on a straight line like the fire mantelpiece. I walk up my drive in the evening(when its dark) to close gates with a walkingstick.
I feel like I in training, I do forget that I have this and might spin around to quick doing a daily task that I had done for years. I have given to laughing at myself in this situation a little black I know but it's better than frustration and crying.
Look ahead to the future, it's just a slightly different adapting future .
Hi Woody, I can identify with the way you are feeling. Although my op was thirty years ago to remove three an's from the left side of my head left me in a right state. The main problem was swallowing food. I used to cough the food back over and over till I blacked out. I suppose it's about 10 years ago I last did that. recovery has been very slow and my balance is still not good. I slowly improved over the years and was able to get back to facing my drag bike to over 200mph. So be assured things will slowly get better and I wish you well for the future. K
Hi, understand your feelings and it must be difficult. It might be worth discussing with your doctor the possibility of excess fluid around the AN. (Hydrocephalis). It can be detected on the MRI. A shunt can be fitted to drain this fluid off. My wife has had this procedure but it was after gamma knife. It has greatly improved the situation.
Yes, There are three issues here as I see it; having gone through that you have.
1) Tasting: your AN may be pressing on your facial nerve, which is not good and you should probably kill the AN with gamma knife surgery ASAP.
2) When the AN destroyed your innervation/blood-supply to your right ear it messed up your balance by sending erroneous information to your cerebellum, which along with your sight and leg/feet muscles controls your balance. Part of your "haziness" may come from the static and pain from an overworked cerebellum, which also causes memory issues. Eighteen years ago when I had a 15mm AN removed with gamma knife surgery I developed my own exercises that help alleviate these problems. By the way, vestibular rehab therapy rarely works for an AN as many postings here have indicated. To regain your balance you need to "reset your cerebellum" with the exercises at the following link:
Also, be sure to read the PDF with this video to get the most out of the exercises.
Here are two messages that I received from people after doing the exercises:
a) “My AN is similar in size to yours and I had Cyberknife two weeks ago. Too early to say whether it made a difference to my dizziness (although I was told not to expect much change) but the exercises described above made a massive difference pre-surgery. My specialist also said to do as much exercise as possible, particularly anything involving hand eye coordination such as racket sports. I’m a cyclist and a runner so have continued both but am completely convinced that it is these exercises that have made the difference.”
b) I had an acoustic neuroma removed 6 years ago. I found your one page article on the treadmill exercises and they have made an amazing difference in my life. I am very thankful that you shared this and that it somehow popped up on my Google search early last year.
3) A third issue may be your immune system; it may need a jump-start. Decades ago, over many months, I was tired and couldn't concentrate for more than an hour before needing to rest. A client of mine suggested elderberry extract. I drank 2 oz that evening after dinner and the other two oz the next morning after breakfast. The malaise was gone that day, I had tons of energy and I have never felt that way again. I have had family and friends say the same thing. If it doesn't work, at least you'll know that your immune system is OK. Go to the following link to obtain a 4 oz bottle:
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Loss of Balance
Awaiting results but saw scan
Acoustic Neuroma Diagnosis
