New Symptom?????

[Nancy Drew]

Hi guys,

I am quite confused about what I think might be a new symptom.  I have had high pitched noises in my AN ear before, but they have only lasted for about a minute.  Yesterday I was on a walk and my ear started hurting (like an ear ache).  Then I started having this high pitched noise in my ear that wouldn't stop.  Thank goodness the sleeping pill put me to sleep last night.  The noise is still going on today, but the ear pain isn't so bad--mostly in my jaw now.  I got really upset last night because I haven't had this symptom, if it is a symptom, since I found out I had an AN back in 2005.  I will admit that I had a crying session last night because it made me feel like my AN really is real and might be acting up.  I know so many of you have tinnitus and other noises going on in your ear, but I am just wondering if it can happen at the snap of the fingers out of nowhere.  I hope it goes away because it is quite bothersome, and it really makes me obsess about my AN even more.  For those of you who know me, you know that I am freaked out enough as it is.

Thanks,

Nancy

[Nancy Drew]

Hi,

I have something else to add.  I have also noticed that I have a funny sensation in my face on the AN side.  Sort of like coming off the novacain after dental work (but, not as intense).  It also feels like a small bit of a burning sensation.  I have noticed this in the past but never really put any weight in it because I have sort of the same feeling when I get a migraine.  Just seems weird that I am getting the high pitched noise and face stuff right now.  Is my AN too small to have any facial symptoms?  Again, maybe these are some phantom symptoms. 

Nancy

[leapyrtwins]

Nancy -

wish I had a definitive answer to your question, but truthfully, I don't.   You might be having new symptoms related to your AN - but then again, you might not be.

I hate to use one of our "mottos", but everyone is different and experiences different things.  There are plenty of stories on this forum of patients with huge ANs who had little or no symptoms, but there are also plenty of stories of patients who had lots of symptoms and tiny ANs. 

IMO you should check in with your doctor. 

Also - and I want to stress that this is just my opinion here - you might want to seriously consider deciding on your course of treatment sooner rather than later.  You seem to have a lot of anxiety related to your AN (which is absolutely normal) and perhaps treating it would put your mind at ease.  I found that once I decided on my treatment, I felt a whole lot better mentally and I'd like to see the same for you.  The things you are going through, quite honestly, break my heart.  IMO you need some resolution.

Jan

[TP]

After my AN was removed when I turn my eyes to the left (AN is on the left side) I hear a distant honking high pitch noise. I have come to the conclusion that it is a nerve thing. It has been two years and I still have it. It doesn't bother me anymore, thank goodness!

[sgerrard]

Then I started having this high pitched noise in my ear that wouldn't stop.  Thank goodness the sleeping pill put me to sleep last night.  The noise is still going on today, but the ear pain isn't so bad--mostly in my jaw now. ... I have also noticed that I have a funny sensation in my face on the AN side.  Sort of like coming off the novacain after dental work (but, not as intense).

I was pretty quick, relatively speaking, to sign up for treatment myself, so I am no model of being patient. But I have to say, this sounds very AN-ish to me. I think the little rascal is acting up.

Let's see how your appt. with the GK guy goes in two weeks. You may be getting close to a decision...

Steve

[Nancy Drew]

Jan,

I hear you when you say it is time to make a decision.  It is just hard when you are getting doctor's opinions, and you can't get in to see them right away.  I have an appointment to see CaryF's doc on August 6th.  Can't get there soon enough!  I am pretty sure I will go with GK.  I think I am just looking for the doctor I feel the most comfortable with.  Cary (he is from CO, too) said his doctor is very patient and kind.  My AN doc is nice, but a bit reserved.  I am a talker (duh), and I need a doc who will answer all of my question.  The new doc is supposed to spend an hour with me.  Hopefully I will have a decision to report back in a couple of weeks.  In the meantime, I guess I will just continue on with my reputation as the "hysterical poster"!  You guys have been a great help.  Thanks for listening.

My high pitched noise is still going on, but the facial stuff has gotten better.  My PCP, massage therapist and chiropractor have told me I carry a lot of tension in the left side of my body (AN side) so the facial pain just might be tension just passing through.  Hope it keeps on going and passes out of my left foot so I can put my shoe back on!!!

Nancy 

[leapyrtwins]

Nancy -

you don't have a reputation as a "hysterical poster" and I hope my response didn't offend you.  I just hate to see you going through so much for so long. 

Like, Steve, I came to a relatively fast treatment decision - surgery was approximately 6 weeks from diagnosis - so I find it hard to see you struggling this way.  Part of my mind set was the sooner I deal with this, the sooner I can get back to living my normal life - but I also realize the importance of confidence in your doctor(s) and the value of researching all the options.

Hope the appointment on the 6th goes well.

Jan

[Cheryl R]

Nancy,        I have had various noises start very suddenly esp on my left.      I do think that it doesn't take much change to have noises act up.    I developed a crescendo type of noise way back when the left was just starting to cause problems.  It was horrible.         I mentioned it to my surgeon and he said oh yes that can happen.             It eventually went away and other new noises would occur.            I had a violin type one before my April surgery  and kind of miss that one as enjoyed it.      Now post op I have a couple different ones.   My right side has its own set of noises.             I have learned after having AN after effects for soon to be 7 yrs that you get used to ignoring them.
With having had 3 tumors now I do know that various symptoms do come and go and are not always  a bad response or mean there is huge growth.     
                                            Cheryl R

[Nancy Drew]

Jan,

Your response did not offend me in any way.  If fact it only shows how much you care.  The struggle is hard, and the mental torture is wearing me out.  Because I call this journey a mental torture most likely means that to continue to W & W is not in my future.  I have W & W since 2005 so that means I have had some mental fortitude to go on with it, but I am not feeling that fortitude any more now that the AN is startiing to act up--even though my "acting up" is slight in comparison to what other people here are going through.  But, mental symptoms are harder for some people than others.  I have read here that many people can do the waiting even when they have a growing AN in their head.  I admire those people, and it seems to work for them.  I tend to be a very impulsive person.  I don't want to "jump in" at this point without thinking first.  I have been doing a lot of thinking, and a lot of the thinking has turned into crying.  I don't want to cry for the rest of my life because I made an impulsvie decision.  Like I said, I think I am going to go with GK--just tryiing to find the doctor who is a good fit for me.  Whatever happens, I will have to accept my situation.  My bipolar isn't easy, but I manage it and don't let it become who I am.  I am so much more than my bipolar, and I know I will get to the point where I can also say that I am so much more than my AN.  Thanks for your support Jan.  It means a lot.

Cheryl R,

You gave me some good info about the noise in my ear.  I don't know much about your type of AN, and I can't imagine what it must be like to have to deal with both ears and many tumors.  I am sorry you have had so many different kinds of noises, and I wish you could have kept the violin ones if you are going to have noises anyway.  Hopefully the noises will go away--I will cross my fingers for you.  I was just telling my husband that the noise in my ear sometimes sounds like being in Louisiana sitting on my grandmother's porch at her lake house listening to the crickets churp.  Those are good memories, but I don't want to carry these cricket around in my head forever.  What a journey this is, and it is different every day.  Thinking about you and thanks for sharing.

Nancy 

[Jim Scott]

Nancy:

I can't offer a credible medical opinion on the new symptoms you're experiencing but they could be associated with a growing acoustic neuroma.  I believe the ear noises and facial sensations you've mentioned are very real.  Unfortunately, only a doctor can give you a credible opinion and medical advice, as you already know.  I pray that comes soon and that your mind can be put at relative ease as you focus on treatment and recovery, at last.

Jim

[Nancy Drew]

Thanks, Jim, for your reply.  Hopefully the AN is not growing, but if it is it is.  I think about four months before I had my annual MRI in May, my AN started growing.  That is when I noticed my hearing get worse.  I got frustrated on many occasions and almost made an appointment with my doc to get a hearing test, but I figured it was nothing.  Who knows when they grow.  I think Jan had some rapid growth in a short period of time.  I guess these ANs typically grow pretty slow so I don't know if it is possible that my AN has grown any more since May.  But, if the typical growth is 1-2mm per year, then it makes you wonder if it is gradual or in a spurt.  I am sure my decision is on the way.  In the meantime you guys will just have to put up with me.  You could ignore me, but that would hurt my feelings!!!  You guys are a great bunch of people.  I hope soon I can write in with my success story.  Nancy

[sgerrard]

I was just telling my husband that the noise in my ear sometimes sounds like being in Louisiana sitting on my grandmother's porch at her lake house listening to the crickets chirp.  Those are good memories, but I don't want to carry these cricket around in my head forever.

I have three things to say about crickets. 

First of all, I have been listening to mine for a year and a half now, maybe two years in fact. I used to think I was actually hearing crickets, and thought it odd that they showed up in some unusual places. Finally, sitting in the sound proof booth for a hearing test, I had to accept that they were not really crickets at all, I was just hearing things.

Second, for most ANer's who have tinnitus, treatment does not stop it. Even those who wind up deaf in one ear still hear their sounds, as unfair as that might seem. Whether it is crickets, or ocean waves, or whistles, or buzzing, or some other variation of sound, it seems like once you get it, you get to keep it.

The third thing is that it is not so bad. Most of the time now, I don't even notice it. When I step out on the back porch, it sounds perfectly natural, and I just pretend it is really coming from the trees. Only occasionally do I find myself dwelling on it for a bit or find it annoying.

Steve

[Mickey]

I`ve had tinnitus for about 30 years! It`s only a year ago that I found out a AN came with it. Who knows? Thats why I`m leaving it alone waiting and watching . So far "stable" next mri in Sept. (3rd one). Lets see what happens? Regards, Mickey

[Nancy Drew]

I know that a lot of nonANers get tinnitus.  My husband has it in both ears, and he has learned to live with it.  Just thought I'd be one of the lucky ones to keep away from the noises, but I also thought the AN wouldn't grow either.  We don't have many crickets here in CO, but we do in my head now!  As long as I don't get fireworks in my head I can deal with the crickets.  I have one of those sound machines that is supposed to help you sleep better, and one of the tracks has crickets churping.  None of the tracks on that machine work for me, but now I guess I can say I have a sound machine in my head, and I got it for "free".  At least my sound machine has a radio and CD player, and if I find a really boring talk radio station, then it usually puts me to sleep.  In the meantime churp, churp.  Nancy