Hearing that comes and goes

[mema]

Hi folks,

I noticed a hard time hearing on the phone at work initially.  I also had been having bouts of vertigo for years.  I went to an ENT thinking I had wax in my ear.  He was very good because after my hearing test he knew I had an AN.  It was 8mm x 6mm.  I was on the verge of loosing medical benefits at work.  I researched and visited MD Anderson, John Hopkins, Thomas Jefferson and Washington U.  Only one told me to watch and wait, but because of the insurance issue I pursued FSR 25 treatments.  The docs all said it was easier to treat a small AN.  Day one of radiation began headaches, which I did't have before and are now chronic.  Also day one of radiation I get a feeling of movement in my head.  Like waves or a worm inching through.  5 months post treatment I lost 90% o fhearing on AN side.These are only 3 of many symptoms.  I wish now I had watched and waited.

                                                                                                   mema

[Nancy Drew]

Mema,  So sorry to hear about the side effects of your treatment.  It is a shame you were more or less forced into having to make a decision based on the status of your insurance benefits.  Just goes to show how desperate our country is in need of better health care benefits for all.  However, I must say that I really appreciate the fact that you shared your story because now it makes me realize that perhaps I should just watch and wait for as long as I can.  You are a brave woman, and I wish the best for you.  Again, thanks very much for the info.  Nancy

[marg]

Hii ladies,
    I have read with interest your information about your AN.  I too have a very small AN  (about 4mm).  After 5 months of research I have decided to have surgery (next week as a matter of fact), because I have constant sound in my ear and have lost some (but not a lot) of my hearing.  Because my tumor is small the doctor can  do a middle fossa approach which I understand has the best chance of saving hearing.  Any treatment is a risk..... but  I am one of those people who does not do well wondering if one day I will wake up and be deaf in my AN ear (which does happen on rare occasions) - I would always wonder if I should have done something sooner.  It's not just size of the tumor.... it's also placement.  So just keep that in mind as you wait and watch...................... my wish is that your tumors don't grow any larger .... and cause you no more problems. 
 I'm thankful that we have the 3 different options..... at least we have a choice about something in this situation.
Marg

Mema,  I hope you can find a treatment to help with all the problems from the radiation.......you are in my prayers.

[Nancy Drew]

marg, Best wishes on your surgery, and I hope you let us know how it turns out.  I think it is important that you do what you feel is right for you, and I realize that everyone has a different story.  Seems these ANs affect everyone in a different way for the most part.  What might work for one person might not work for the other.  As maybe a similar example, I have bipolar disorder, and my doctor said that his bipolar patients (70% of his practice) are as different as night and day for the most part.  He has all of us on different combinations of medications.  In other words, one size doesn't fit all.  So, I think it is this way with the ANs as well.  I find that when I meet others with bipolar, I have to be careful about what I say (like, I take the "miracle drug", and you should try it) because while it might work for me it might not work for others. However, when I talk to others with bipolar disorder, we do seem to have a lot of symptoms in common, and it's nice to get support and validation.  So, I think it is neat that we have this forum to relate the things that are similar, and at the same time be able to give support to those who have something totally different going on with their AN.  Hang in there, and I wish you the best for your upcoming surgery.  Nancy

[marg]

Hi Nancy,   
I had all my pre-op appointments today... and another hearing test.  Discovered I did loose a bit more hearing since first diagnosed in Dec... but maybe it was worse because I had louder tinitus today.   Many people  with AN  have better hearing some days than others... just as the tinitus can get better and worse too.  You are so right... there is no 'one size fits all' with these AN.  We all have to decide what we think will work best for us.

Thanks for the good wishes.   I do plan to write and let you all know how my surgery went..... or I will ask my husband to do it for me if I'm not up to "being on line" yet.    

Marg

[Ric]

Hi Nancy,

I too have a smaller AN 5mm diagnosed by Dr. R. Jackler at Stanford.  My hearing has been flucuating in that ear for a while, the last year.  I woke up one morning with virtually no hearing in the rt ear (the AN) ear which is how i got diagnosed.  It got better with prednisone and a low salt diet.  I have very minor dizziness at times that has not yet effected me.  I always have tinnitus, but it flucuates as well, some times several times a day at times it is louder, or has a different tone. My doctor said I could watch and wait, but he feels it is an active tumor based on my symptoms and it will not get better with time.  It could stay the same for a while but I'm not sure I personally want to wait, since I now know just how fast one can lose their hearing.  I am trying to decide b/w Radiation and surgery via the middle fossa.  I guess my point is, is that you never know with these things.  I read so many stories of people who had fewer symptoms with much larger tumors!  I too want wait for treatment.  On one hand maybe something will change and make my decision easier.  On the other hand maybe something will change and make my situation worse.  Any who, it is a tough situation to be in.  It feels like such a gamble, and I have never been any go or interested in gambling.  Learn as much as you can about all the options.  Best of luck.
Ric

[Nancy Drew]

Ric, It is interesting to hear your story.  Of course, I cannot relate to your symptoms totally since I don't experience most of them, and the ones I do have are not so bothersome at this point.  It amazes me to hear that sometimes the size of the tumor doesn't really matter in some cases.  Is there an explanation as to why your small AN is causing more symptoms than mine?  Like, does it have to do with the location of the tumor?  Has your AN grown since your initial MRI or have you even had another MRI since diagnosis?  I am having my third MRI next week, and I keep thinking if there is no growth (or little) I can just continue to watch and wait.  Maybe what I am trying to ask here is, "Did your symptoms get worse all of a sudden without the turmor growing?". I don't want to get a false sense of security with the fact that my tumor is so small.  My doctor basically says don't worry about it since it is so small.  What exactly is your doctor recommending?  Have you gotten a second opinion?  So many questions to ask about these tumors, and I often wonder if doctors might recommend treatment prematurely "just to be safe".  This is a worry of mine.  I don't want to be "scared" into something that might not be necessary. But, there is something I have different than you and that is the hearing in my AN ear is better than in my non-AN ear except when I have those spells of hearing getting worse in the AN ear.  So confusing.  Good luck with whatever you come up with in your treatment or if you decide to watch and wait.  Nancy   

[marg]

Hi Nancy,