ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Chances3 on February 16, 2011, 07:26:40 am
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I had my AN removed 4 months ago. I have the following symptoms, is this normal?
I have a disconnect to the world around me - kind of like not being in the environment.
Any movement of my head results in my entire visual world shaking. To best describe,
it's like you take a video camera and shake it while you are filming, then go watch it on your TV.
It's really bad when I walk or in a car.
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Hi Chances3 and welcome to this forum .....
I am not a medical doctor, but what you are describing sounds like nystagmus. See: http://medical-dictionary.thefreedictionary.com/nystagmus If this is a new thing, I would certainly tell your doctor about it. I have had intermittent nystagmus for many years. It is frustrating and disorienting. Sometimes the cause is elusive, making proper treatment sometimes difficult to find.
Tell us a little bit more about your AN and other symptoms.
Clarice
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Hello Chance3,
Many, if not most, AN patients have some Vestibular effects from AN. If you haven't already, I would advise checking in with a Physical Therapist who is good with Vestibular Retraining. Check with your treatment team to see if there is a PT that they commonly work with. When you lose a vestibular nerve, the brain has to learn how to deal with the loss of vestibular input from one side. I found that after having my AN removed, that Vestibular Retraining therapy reallly helped retrain my Vestibular system to compensate for the loss of the vestibular nerve on the AN side.
You'll find more posted about Vestibular Retraining therapy if you search for previous posts.
Regards,
Rob
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Chances3:
I still feel that movement when I walk, though mine is mild. Everything in front of me moves up & down. With time, it has diminished. Physical therapy certainly helped. But if I'm too sedentary, it gets worse, along with the dizziness & imbalance.
It sound to me like you have a more severe case of nystagmus than I do. Are you doing any physical therapy or exercising on your own? This would certainly help get you vestibular system back on the right track.
Syl
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i had radiosurgery for mine 7 months ago - i have symptoms very similar to those you describe with the world being in almost constant motion (even if i am not). the vestibular therapist i saw called it 'oscillopsia'.
i have been to see my neurosurgeon and ent surgeon today - who have emphasised the importance of persevering with the vestib rehab to get the best result.
while they could not tell me all my balance problems would go away - they seemed confident they would improve, and not be such a debilitating symptom in time with ongoing rehab.
so i agree with the others who have recommended vestib rehab.
best wishes in your ongoing recovery,
vikki
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Thank you everyone who has responded to my question. Somehow it feels better to hear from other people who
have the same symptoms and understand. I have been in Vestibular Therapy for about a month. I meet with a therapist
1 to 2 times a week, and I also do my exercises everyday. My surgeon told me that he thinks this is just fiber from
my severed vestibular nerve and he believes I will continue to heal from it. However, if it lasts for 6 more months,
he told me that he could place some fluid into my ear and eliminate the fibers, but that would probable mean
loss of hearing in that ear. He worked very hard to preserve my hearing in that affected area, which he has done.
Anymore insight would be greatly appreciated. My employer has placed me into short term disability at this time.
I wonder if I will ever get back to the health I had, so that I can continue with my work life.