3 mm AN balance problems

[Gearbox123]

Hi, I am new and was just told that I have 3mm tumor in May, I  too have bad balance issues and very little hearing loss.I have be told by most  Doctors that I have seen that my tumor is very small and  that i should not have such problems with my balance. My trunk of my body rocks back the forth when I stand, and I sway at times, it is as if I were on a ship and I waiting for the next wave. I went to a movement specialist Monday @ NYU and was told that my movements were not consistent with that size tumor, that  it may  be  a condition called dystonia. Has anyone else had this same problem. I am @ watch and wait with the tumor and now I must wait about my gait problem if that what it is!  Any info would help? I just hope that  I don't have both but if I do I  will deal with it, it took them 5months to find out I have a small tumor, oh well, thanks

[Mark H]

Sounds about like me. I have 'em on both sides about 2mm each. And my balance sounds like yours. At work when I'm just standing I prefer to be in contact with something be it a counter or display just to feel like I have some support. And I can hear pretty well unless there's any background noise, then voices just get lost in the sound. My AN's have stayed tiny since I was diagnosed a few years ago and as long as they stay that way I'm willing to leave them alone.
Mark

[TJ]

Dr Chang gave a talk last week at the Stanford AN support group.  During his talk he mentioned several times that each AN is unique.  The doctors cannot tell from the MRI how much pressure the AN is putting on any of the nerves.  He said that is why sometimes people with large AN's do not experience any or few side effects, while some with small AN's may have many problems.

Swaying is one of the balance issues that a lot AN folks have.  I had a lot of swaying until I had CK done and it has pretty much stopped.  Still have some balance issues but at least when I am standing I stand still.

TJ

[arizonajack]

I went to a movement specialist Monday @ NYU and was told that my movements were not consistent with that size tumor, that  it may  be  a condition called dystonia.

Anything's possible.

Best thing you can do (like the rest of us) is educate yourself about Dystonia so you'll know how to talk to doctors about it.

Start with the following article from National Institute of Neurological Disorders:

http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm

At the end of the article there are resources listed. One of them is in the Bronx.

[CHD63]

Hi Gearbox123 .....

Welcome to this forum.  You have already received good answers to your request for info.

I am not a doctor, but I just wanted to add that the specific location of a person's AN seems to have more to do with symptoms a patient is experiencing, than the size does.  A very tiny AN growing in just the right spot can cause balance/swaying to be the first symptom one notices.

Many thoughts and prayers.  Let us know how you are doing and ask any more specific questions you many have.

Clarice

[GaleWynne]

My sister had the same type of symptoms.   Her hearing was perfect.  She had to quit her job as a waitress due to the balance problems that worsened over a six month period. Finally a doctor had the sense to order an MRI which showed 3MM AN. Her balance symptoms were so bad that she had the surgery. That was 10 years ago. She lost her hearing and still has minor balance symptoms which worsen with fatigue.  However, she works full time and leads a normal life. Most people have no idea what happened to my sister.  They are usually shocked when they find out that she is single sided deaf and more shocked to find out she had an AN, which usually they have never heard of.

90% of ANs manifest as hearing loss, 10% manifest as balance. Please note that my sister's case was an extreme one, and we found that out last year when we went to the ANA Annual Conference and very few doctors had dealt with such a small AN as her, and when we followed up with her doctor, he said it was very rare.  We did this followup since I was disagnosed with a 2MM AN last year - my hearing is perfect, my balance is a little off, especially when I am tired.  I also have to be sure to stay hydrated. 

Again, my sister's case was rare.  I'm not saying you will experience what she did.  It's been a year since my diagnosis and I have been stable. I will have a followup MRI soon.  But I wanted to say - a person can have severe balance symptoms due to AN, to the point of having to have the tumor removed in order to return to a normal life.  My sister has told me that if I ever get to that point - I will welcome the surgery.   Of course, right now, I am hoping it will just stay as it is and never grow. I feel there is a good chance of that, there have been studies done in Finland or Sweden (can't remember which country) where they have examined the brain of people that have passed away and found many with very small ANs, and they never knew they had an AN.  And there is some new developments going on in terms of treatment - I read a couple months ago about some type of cell receptor work going on in Poland that could help those of us with ANs.

Oh, you may want to check into vestibular/balance therapy.  That might help in the meantime.  Also, just walking helps a lot. 

I wish you the very best.

Sincerely,

Gale

[GaleWynne]

Oh, one last thing - the rocking and feeling like you are on a ship - that is how my sister described it.  That is how she felt.  She also swayed.  The doctor (who was filling in for her regular doctor)  had her stand up and close her eyes and she fell over - luckily he caught her. And said she needed an MRI. 

Again, good luck and keep in mind that as you continue to learn about AN, you will probably wind up knowing more than some of the doctors you encounter. 

[Gearbox123]

Thanks for all the help and info, I have another appointment later this month with the MS team  in Nyc Dr Choe, hopefully he will give  me some good news, thanks again.