ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: ncbj on January 07, 2012, 05:31:15 am
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Hi,
Another newbie !
Diagnosed feb 2011, AN 8 mm. On WW. Second MRI next month.
Initial symptom: heavy vertigo. It lasted for app. 3 weeks. No vertigo anymore. However, daily balance issues: dizzy when visiting the supermarket, have to focus on the ground a few meters ahead when biking and walking. In addition to that my hearing is deteriorating (using hearing aid), I have tinnitus and I am frequently very tired. It seems to be a quite generic pattern for AN-patients.
I just wonder if any of you have experienced improvement in balance after microsurgery ? I have often read that there is no problem only having a "balance system" in one side - of course after a period. I am just hoping that the balance issues I have now is due to "noise" from the affected ear. Is it to naive ??? It is also a widespread statement that surgery can only stop deterioration - not improve your situation.
Niels
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I had surgery Oct 6 for a 4.7 cm tumor and now, at 13 weeks, have improved balance. My ability to feel comfortable when upright, and when walking, has slowly improved on an almost weekly basis. I can now easily walk several miles outdoors at a reasonable 15 minute mile pace with normal head movements. My surgeon told me on day 2, at discharge, that I would be back to running at 3 months which is important to me as I have done it daily for decades, and for my health as I have both asthma and hypertension.
My recovery was delayed temporarily by a CSF leak that kept me inactive until it resolved itself in about 2 weeks, and by a case of bronchitis contracted who knows where. Without those complications, I believe I would be further along the recovery route, but I am very satisfied with the
balance status at this point.
My surgeon believed the tumor was so large that my vestibular system was compensating all along for years before the surgery, so there would not be a difficult adjustment to losing the nerves themselves. My balance is better than pre-surgery. Hope this helps.
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Hi, Niels, and welcome ~
Most AN surgery patients do experience some improvement in their ability to balance, following surgery. It depends on how much the vestibular nerve has been compromised by the tumor prior to surgery and if the brain has compensated for the loss of input. If the nerve is still partially operative, the brain will receive confusing signals and that will precipitate a loss of equilibrium. Following AN removal surgery, the patient will need to undergo some balance therapy in order to re-gain a relatively normal sense of balance, although it won't be exactly as it once was (pre-AN). In some patients (I was one of them) the vestibular nerve has been so badly damaged by the growing tumor that the brain stopped receiving signals some time ago and has already (mostly) compensated, so re-gaining balance is fairly simple and rapid. Again, my balance is not 100% of what it was prior to my AN but it is quite serviceable. From the information you offered, I'm guessing that you should re-gain most of your balance ability fairly soon. Running shouldn't pose too much of a problem, once you get back into it. Some of our members that underwent AN removal surgery have run marathons within a year of their surgery. I'm not a doctor and can't offer any guarantees but with some luck, determination and practice, you should be back to your running regimen fairly soon.
Jim
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Surgery or no surgery, your body will learn to compensate from a compromised (or detroyed) balance nerve.
Vestibular exercises and/or physical therapy can definitely help.
Compensation may not be 100%. For example, I still have slight balance issues when walking on uneven surfaces, when it's dark outside, and when I'm fatigued or stressed.
Jan
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Hi niels,
sorry to hear that you are also "in the club" .
maybe you are interested in the topic we are currently discussing under "Balance issues": "wonky head because of preserved branch of vestibularis"
It is about wether it is more useful to cut the whole nerve or leave -if possible - one root.
I know it is not easy to digest all these information and make your decisions prior to surgery.
I wish you all the best and a "clear head"
germangirl
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Thanks for your kind replies.
I guess that it cannot be ruled out that balance can improve. However, Jim and LakeErie had AN's much larger than mine. Don't know whether that is important.
For the time being - after almost a year - I would say that I have adapted quite well to the situation. As mentioned I am able to ride bike and actually do some running (it requires 100% attention from my side) even though I prefer solid ground under my feets and bike and I need to focus on the ground in front of me. It is the dizziness - e.g. when shopping - and tiredness which really is affecting, among other things, my job performance (I work one day per week from my home which is not optimal for a management position in the financial service industry) and my general well-being. I have a strange feeling in my head - especially after a long day with many meetings.
In reality, I guess that I should not expect balance to improve much. And hope for the contrary. But could the hope be an argument for asking for a surgery even if it turns out not to have grown when I get my next MRI ... that's my dilemma.
I think, however, that germangirl's reference to the other topic is relevant too. I will look there as well - there is just so much information you need to gather !!
In many texts I have seen the expression "wonky head". Anybody who can give an explanation ? I can't find it in my dictionary :o)
Niels
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Hi niels,
Difficult to explain, that is also a problem when sitting infront of a dr...
Maybe this threads give you an idea:
http://www.anausa.org/smf/index.php?topic=10472.msg120608#msg120608
Best regards
germangirl
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I'm well over a year out of sugery. I still have balance issues. I did climb a ladder to my roof to check my dtv dish today. When walking toward the edge of the roof to climb the ladder back down. My butt puckered.
I use my eyes to tell my brain if I'm balanced or not. Dark room that I can't see in is a nightmare.
My ballance was real bad right after surgery. But it did come back faster than I thought it would.
I regret that I won't be buying a motorcycle anytime soon. But others on these forums have gone back to riding bikes. Peddle and motor bikes. One guy is a surfer. So you have hope.