Questions regarding symptoms, and whether the "W&W" option is right for me

[mchp82]

Currently I am having a few symptoms which are affecting my ability to do daily tasks. My symptoms are listed below:
Unable to balance standing on one leg
slight facial weakness on one side
unsteadiness while standing in a normal position (i.e. must move foot in order to maintain balance and not fall forward or backward)
Unable to balance when riding a bicycle or on a slant (i.e. on a roof, ramp, hill, etc.)
Episodes of dizziness and nausea about 2 times per month
NO hearing loss as of a year ago, when first diagnosed

What I was wondering was at this point, how it's affecting my ability just to get around (I fell twice today from losing my balance stepping over something) or stand upright without moving, is the watch and wait method really a good idea, or should I seek a new doctor who will be willing to treat this?

Does the fact that I'm only 16 make a difference in this matter?

Also, what are the risks of treatments?

[LisaM]

Hi there mchp82.  What size is the AN found on your head?  Do you know its measurements? What is your current doctor telling you to do?

[mchp82]

According to the report from a while ago (I'm overdue for an MRI I think) they said it was a 5 mm mass with a 6 mm area of enhancement. The doctor is saying to just watch it, although it's starting to affect me being able to live life "normally". I'm afraid to go on certain ladders without a spotter because I tend to lean toward one side or lose balance when climbing it, I can't swim, ride a bike, or even just stand still in a room. If I try standing still I have to put a foot out so I don't fall over, and I can't balance on the leg on the affected side for more than 2 seconds literally. I have fallen a few times due to loss of balance, and I've been missing school more and more frequently due to episodes of nausea and dizziness brought on by this. I also have some slight weakness in my facial muscles on the affected side if that plays into all of this at all.

I'm just getting annoyed of all the ways this is negativley affecting my life, and feel that treatment should at least be considered for this, if not followed through upon.

As of my last appointment, the final words were "I don't want to do anything yet because his hearing is nearly perfect in that ear, and I don't want to risk damage to his hearing, and this is not really affecting him that much" (speaking to my parents).

[BeckyMax]

First you need to find out when you are due for your MRI, talk to your parents and let them know what is going on.  Maybe document when these thing happen in a journal and share it with them.  Let your doctor see the journal as well, he can then have a better idea of how this is really affecting you.

Sorry I'm not more help than that, I'm new to this in the last few weeks, but did want to respon.

becky

[alabamajane]

Hi,, although your tumor appears to be small,, and I am not a Dr.. you are experiencing considerable amount of symptoms.. hearing loss, in my opinion, is not the only symptom to be concerned about. I had about 90% of my hearing on that side when I went into surgery about 4 mo. ago.. I did have balance issues, nausea, tinnitus (the ringing type noise in that ear), and headaches, dizziness, etc etc.... mine had extended from the IAC, auditory canal,, into CPA and was pressing on the brain stem,, which can lead to very dangerous conditions.. so it was time for me after three years of w&w to seek treatment.
I would suggest that you/ your parents have your MRI sent out to House Clinic in Los Angeles (HEI.org) for a free consultation by phone , no obligations,, I did and found it to be very valuable info as far as second opinion. , and I did not go out there for the surgery. There are also other places that will review your MRI and consult with you..
Risks from any of the treatment varies in each situation including w&w.. so that is hard to explain.. this is very serious surgery to put it mildly,, and sometimes radiation is recommended which is less "invasive",, but I think you definitely need another opinion based on symptoms you are experiencing.. that is one reason I transitioned from w&w to surgery is due to fact it grew over time and was causing symptoms I could not function well in daily life..  just some thoughts to ponder,, good luck and keep us informed,,

[sunfish]

Treatment is often not very helpful for balance problems, whether you have surgery or radiation.  The trouble is that your balance nerve is affected by the tumor, by surgery, by radiation.

We have two balance nerves, one on each side.  Supposedly, us ANers get more balance problems as the "bad" nerve dies, but these problems can also gradually disappear even without treatment as the "good" side compensates or makes up for it.

I never had any balance problems until two months before radiation treatment (CK).  After treatment, I still have the same problems, on and off.  Treatment made no difference, as far as balance went, at least in my case.

[LisaM]

Did you have your next MRI yet?  It seems that these tumors are so specific too each person it's hard to know what one should do.   T

I have chosen to wait and watch but I have very few symptoms, only a small amount of hearing loss and an occasional dizzy spell (and I'm quite a bit older than you).  I was diagnosed about a year ago with a tumor at least twice the size of yours.  In an effort to avoid surgery and radiation I have made a quite a few changes to my lifestyle.  I stopped eating wheat and dairy and I avoid salt and sugar.  I'm taking supplements curcumin and honokiol, and I also practice Kundalini yoga everyday now.  I no longer use any electronic devices on my head. My MRI this past month suggests that the tumor has reduced in size by 5mm but I won't have another MRI for 9 months. 

Your balance nerves may be entangled with the tumor. You have two vestibular nerves on each side; a superior and an inferior.  My understanding is that these tumors are an overgrowth of schwannoma cells.  Schwannoma cells are cells that insulate the nerves.   

Where do you live?  I would like to encourage you to try and get to a kundalini yoga class as it may help you with balance.   You can find plenty of Kundalini yoga on youtube.  Here's a link I found that may be of help:

http://www.youtube.com/watch?v=WvL60p79aQo

I know that  there is an exercise (called a Kriya in Kundalini speak) that uses the eyes to strengthen balance, very similar to an exercise that is done in physical therapy for post op balance issues.  You sit crossed legged and while keeping your head still you look only with your eyes to each upper corner and each lower corner very rapidly in a square motion going round in one direction and then changing direction (if you do 30 seconds, 15 in one direction, 15 in the other).  The goal would be to do it for 3 minutes but I would suggest starting with 30 seconds.  I tried to find a youtube demo of this but had no luck. Check out youtube and see if anything seems to fit for you.  And keep us posted on your developments!

Get lots of opinions!

Best,
Lisa M

[Kathleen_Mc]

mchp82:
I am so sorry you have to have this happen in you life at all never mind so young! I was 23 when my tumor was found but I had been misdiagnosed from around your age, I have some understanding of where your coming from.
Although surgery may eventually improve your balance it is not a reason for having surgery. Believe me I would not rush into surgery with balance being my main concern, there is too much else you may loose and you may not have that much improvement in your balance. I remain with balance issue's and it's been over 20 years since my initial surgery when the effected balance nerve was removed, the other "balance nerve" hasn't totally compensated for the loss. Just consider the hearing loss alone and what role that would play in your social life! And what about facial nerve loss, not something you need to add to the problems of dating and what not if you don't have to! (that being said it is true that earlier intervention may prevent facial nerve involvement)
I would certainly have a second, or even third opinion, on what should  be done for you at this point.
Kathleen

[mchp82]

Sorry for taking so long to get back, my AN has grown slightly since June 2011 to 7X5X2 mm if I recall correctly. I've missed a total of 23 days of school due to the AN episodes over the course of the 2011/2012 school year so far, but at least my grades don't show it d:

I've been looking into excercises, and as for treatment it's not only the balance but the episodes of diziness and nausea that I'm having problems with, and I don't like the GK radiosurgery options. I'm seeing Dr. Gutin and the Otolaryngologist (I believe) on his team the same day, but in the morning over at Sloan/Kettering. Thanks for the input, it was all appreciated.

[james e]

STAY OFF THE LADDERS!

[mchp82]

STAY OFF THE LADDERS!

Haha, yes. Learned that lesson again yesterday trying to use an extension ladder to get into the attic. Got to the third step before I said I can't do this anymore 

[mchp82]

Follow up, got back from my 8 hour trek at the doctors today in the city.

I saw selesnick, the ENT type of doctor, and he said the best thing seems to be to W&W, due to the risk of hearing loss and slight growth, and to try vestibular therapy. Then we saw Dr. Gutin, the neurosurgeon who said just listen to Dr. Selesnick.

Thanks to Dr. Selsenick, I learned I really shouldn't try closing my eyes and expect not to fall over, glad he put his hand on my shoulder to catch me before I fell 

That brings me to my next question. Anyone got any tips on how to locate a vestibular therapist in your insurance plan? I tried the insurance website, but the most refined you can get is physical therapist, no other related choices.

[CHD63]

Hi mchp82 .....

Dr. Selesnick is well known so I would listen to him, as well.  I'm sure he wants to preserve your hearing as long as possible.

Regarding a vestibular therapist ..... try looking up Balance Centers or large medical centers that specialize in working with people with balance problems specifically.  Physical therapists simply do not have the equipment nor the specialized training that is really needed for vestibular rehab.

Good luck.

Clarice

[mchp82]

I had another question I forgot to ask too.

Dr. Selesnick (sp?) said that it was irregularly shaped for an AN, but they don't know what to call it so they're assuming it's just an AN. This is a bit concerning to me, has anyone else had this happen to them, and if so what did it turn out to be, if you know?

Thanks for the help guys and gals, as usual you're a great group of people.