ANA Discussion Forum
General Category => AN Issues => Topic started by: Ronnie on February 17, 2007, 08:18:14 am
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Diagnosed this week with 2.5 mm AN. Four weeks ago became ill with pneumonia. Prior to being sick had no symptoms of hearing loss or imbalance/dizziness. One week into the illness noticed hearing loss/humming in left ear and terrible dizziness/imbalance. My major problem is the terrible dizziness and traveling in the car (forget about driving, I can't even be a passenger). Went to my first doctor this week and told me I could wait and see about surgery/treatment at least until the next six month MRI, suggested PT for balance. Hearing in left ear is shot, nothing worth preserving. I am just amazed that something so small can cause so many problems. Has anyone gone for "vistibular therapy" for balance and has it helped any?
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Hi Ronnie and welcome. I'm sorry to hear that you are now joining us, but... am glad to hear you are joining us... :) We're all here to help.
I also checked into vestibular therapy and know of some on this site that have gone through it.... some worked, some didn't. There is a question with some insurance carriers, too, if they will cover it. There are balance exercises that some have shared around here and I do believe that the "balance" forum may have info there that you will find helpful.
Who in NYC are you dealing with for your diagnosis? Did they say on the MRI report what size your AN is and it's exact location?
Anyway, welcome...... we're here for you.
Phyl
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I saw Dr. Selesnick at Cornell. It's 2.5 mm. As far as location other than it being on the 8th cranial nerve I don't know anything else about location. My insurance will cover the balance class I start Thursday. The dizziness is so extreme I haven't been able to function for the last three weeks. I am just blown away by this site, so much info. Thanks.
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2mm? .. thats tiny! but if the balance is getting you a hard time .. watch it closely
I would think the balance class will help a lot!
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Hi Ronnie
I'm also in nyc and am currently taking vestibular therapy. Feel free to send me a message with any questions you may have. I had my second opinion at Cornell, and got a very positive impression there. Your tumor may be small or large, it doesn't quite matter -- there are people with 'mega tumors' who have few side effects and others with 'mini' tumors who have many side effects. It depends on many factors, not just size.
Welcome to the forum and we're here to answer any questions you may have!
Maarten
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Do you feel the therapy is helping you? I wonder if I'll ever be able to drive again. what doctors have you seen? What is shocking to me is that I had no symptoms before I got sick and then suddenly...
Are you considering surgery? Thanks for the help.
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Ronnie-
If you decide to go the surgical route please get a second consult, try NYU..Dr. John Thomas Roland.
Joe-
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Dr. Roland was going to be one of my choices. Good to hear someone is familiar with him. Thanks.
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Ronnie,
I live in NY and Dr. Roland operated on me. I did not experience any dizziness before or after my surgery or any balance problems before my surgery, but after surgery, I did have some balance problems which I was told I would. I was so impatient that I looked into vestibular therapy but was told to wait 3 months. Around the 3 month period I saw a big change and my balance did get much better. Everyones situation is different though. I did not experience what you are having. I did speak to a lot of people who swear by the vestibular therapy and that it helped them. If you are looking for a second opinion, I highly recommend Dr. Rowland. I also saw Dr. Selesnick when I was first diagnosed. Feel free to ask me any questions, in or out of the forum.
AL
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Hi ronnie
I do think the balance therapy will help, although i only started 4 wks ago and they say it'll take about 2 months of regular (2x/week) to see major improvements.
I find the therapy probably the most pleasant of all in this journey: exercises are good and enjoyable almost. I had no dizziness at all pre surgery, and lost the vestibular function in the operation. Balance is all over the place right now. I had surgery at NYU myself, and found the team there amazing. I obtained a second opinion at Cornell so if you have any questions that i can answer on either of those 2, i'd be happy to do so. Most people are able to drive cars again, and relatively shortly after surgery. Motorcycles are a different story.
Interesting you just got the dizziness/balance issues all of a sudden. Have you decided on treatment option already? (gammaknife, wait/watch, surgery). I hope your balance therapy will help you.
Maarten
Do you feel the therapy is helping you? I wonder if I'll ever be able to drive again. what doctors have you seen? What is shocking to me is that I had no symptoms before I got sick and then suddenly...
Are you considering surgery? Thanks for the help.
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I have not decided on a treatment plan at this time. For now I'm going to do the wait and see until the 6 month MRI unless these horrible balance problems persist. I do want to get a second opinion (soon) and will most likely try to get an appointment with Dr. Roland. Has anyone ever heard of anyone presenting with these symptoms as a result of beiing ill/pneumonia/virus? My thanks to everyone for your help.
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Hi Ronnie:
I was diagnosed a few months after a terrible illness. For four days I was vomiting, spinning and bouncing off the walls. It was horrible. I went the urgent care on the fourth day and was given dramamine which helped within an hour. I couldn't even keep water in my stomach until I took that little pill. It was a miracle.
I saw my GP two days later and he said I had fluid in my ears and a virus.....after two months treating the fluid, the AN was found.
These little tumors can cause a heck of alot of trouble. Good luck to you.
Kathy
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Hi Ronnie,
I currently am a patient of Dr. Roland. Highly recommend him. My AN is 8 mm and currently I am wait and watch. Last month I had a scare because a few days after I had a really bad head cold my AN ear started to crackle and pop and I could hear my own voice repeat back inside my head. I became dizzy too, nothing like you are describing, but I freaked out and thought it was related to the AN. Placed a call to Dr. Roland's office and he called me shortly after that. I game him all my symptoms over the phone and reassured me that what I was experiencing was a eustachian tube problem and nothing related to the AN. He is really good with distinguishing what symptoms are related to your AN and what is not. If you balance therapy is still not helping, I would recommend getting an appointment with Dr. Roland and get his thoughts. I am not a doctor, but I would bet that these symptoms are not related to your 2mm AN and they are somehow related to the pneumonia that you had. I wish you the best with your therapy. If you decide to get an appointment with Dr. Roland, let me know your thoughts of him. Take care.
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Hi,
Today I did make an appoinment with Dr. Roland for 3/15. Have you gotten other opinions/do you know of any other doctors in the NY area? Thanks.
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Diagnosed this week with 2.5 mm AN. Four weeks ago became ill with pneumonia. Prior to being sick had no symptoms of hearing loss or imbalance/dizziness. One week into the illness noticed hearing loss/humming in left ear and terrible dizziness/imbalance. My major problem is the terrible dizziness and traveling in the car (forget about driving, I can't even be a passenger). Went to my first doctor this week and told me I could wait and see about surgery/treatment at least until the next six month MRI, suggested PT for balance. Hearing in left ear is shot, nothing worth preserving. I am just amazed that something so small can cause so many problems. Has anyone gone for "vistibular therapy" for balance and has it helped any?
dear ronnie,
hang in there man, you will be able to get thru this.
i had a large tumor, it was probably growing for years, i had symtoms, but they weren't severe enough to warrant a hard-headed guy like me to see a dr.
anyway, i had knee surgery back in oct., following the knee surg., i got sick from the pain meds, following that, my symtoms from the tumor got really bad and promted me to see a dr. there may be some correlation between illnesses and an onset of symtoms?
good luck, make sure you educate yourself on the tumor and treatments as much as you can. be glad that you found it while it is small, that gives you more options.
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Perhaps there is some connection between the meds and heightened symptoms. The first week into the illness I was on antibiotics which caused terrible insomnia, I actually did not sleep for 5 days. My symptoms seem to come out suddenly at the end of that first week. I wish you a speedy recovery and I thank you for your help.
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Ronnie-
I consulted with four teams, you have already Selesnick and are going to see (in my opinion) the best in Dr Roland. I also sent my MRI to House and Brackmann called me three times to discuss. The fourth was a gentleman in NJ...he didn't do the kind of numbers to make me feel comfortable....enjoy your visit with Roland on the 13th. If you have any questions feel free to contact me via my email address.
Joe-
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Ronnie,
If you can hang in there, try the exercises. Your body may need to recover from the illness--any weakness can cause symptoms to worsen. The body will adjust over time. Your tumor is small, so watch and wait probably a good idea.
Nan
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Hi Ronnie, just following up, did you have your appointment with Dr. Roland at NYU? Since he is my doctor, just wanted to know your thoughts and if you made a decision on treatment yet. I am still wait and watch and will have my next MRI in October, unless something changes between then. Let me know when you get a chance. Thanks.
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I had surgery to remove my tumor and I was told by my surgeon the reason they remove my vestibular nerve along with my tumor so the brain dosen't send mixed signals. The tumor growing out of the left nerve is being compromised and sending the brain mixed signals to the right side nerve causing you difficulty in balance. With my left vest. nerve gone my brain is able to send a "clear" signal to the right side. After surgery I had extensive vistibular rehab and performed daily exercises in between my visits to the therapist. This helped tremendously with getting my balance back. Although, I am not 100% back due to a recent diagnosis of nystagmus. I got to a point in my healing and seemed to stop. Doctor put me through testing due to my symptoms (my field of vision bounced when I walked and turned my head) and I was dx with nystagmus. Fancy word for my eyes don't follow my head movements. All is well though and I continue daily walks of 1.5 miles with my dog, Blu and teach yoga classes. Yoga is good training for ANers who suffer with balance issues. I was 9 years practicing yoga pre-surgery and my balance didn't improve, but worsened. I don't think vestibular therapy will help much at this time as seems to me the tumor is compromising your vestibular nerve.
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I have been going for vestibular therapy for the past month and I believe it has helped, although the doctors had told me that in time the dizziness would lessen anyway.