Newbie Too March 28th

[millie]

Hi everyone-
I am a retired 64 year old English teacher who thought her hearing loss ( left ear) was normal wear and tear and probably the result of twenty years of middle school cafeteria duty (concrete walls and floors)...finally my husband told me I had selective hearing and I had my ears tested and the MRI at end of February  and the rest is history.  I was shocked and upset,  like everyone here.  Then the  ENT sent me to two neurosurgeons the first two weeks of March 2012 (one at NYU, one at MT. Sinai in NYC) and both recommended watch and wait.  They say it is small (1.5cm x .5  x.5) but to me it is a log jam.  My hearing in the left ear seems to have totally diminished in the last two months, I have almost constant  ringing in that ear; I feel like something is sitting on my head, inside, upper left  (fullness);I feel something akin to dizziness sometimes, and I feel best when it is quiet and I am waking up in the morning.  I was told I would get used to this feeling and that my right side would take over balancing and compensate for the left.  The neurosurgeon said to stay active.  They mentioned doing nothing, or, radiation, or surgery.  I knew I needed a support group and was thrilled to find this site.  I have also spoken to a few people as a result of the "willing to talk" list sent by the ANA and was so encouraged to hear there is life after an acoustic neuroma diagnosis.
I know my job right now is to become educated and also to try to keep myself busy  doing things that are vital and important in my life orbit-it does help if you can get your mind off that little man in your ear.  I have been in tears but I am also praying for hope, wisdom and strength for us all.
I have to believe the doctors gave me the right advice... although prior to my consult with the neurosurgeon when the  Mt. Sinai audiologist  tried to test my hearing, the machine wasn't working properly  and of course, I thought it was me.  I was sure that my case was so unusual, and that something was  horribly wrong- that my results  had broken the machine since the audiologist kept plugging it in to different outlets. I was a shaking wreck. Later the neurosurgeon said he didn't need the results of the hearing test to tell me what he saw on my MRI. He said to watch and wait. No one really scheduled a followup, (except  the first neurosurgeon  gave me a script for an MRI in August and he also told me I can e-mail him anytime.  He, however, seemed to prefer radiation to surgery)
The thought of a tumor in my head bothers me and I think I want it out.  I would do anything to get rid of the feeling of fullness in my left ear/head.  I can bear the hearing loss.  The ringing and out of head sensation is weird...but would surgery get rid of those? Also radiation has side effects and I read that tomors take a while to die and may grow back.
There is an ANA syposium at NYU in NYC on March 31st and I can't wait to meet the folks there and to listen and learn.
Watching and waiting faithfully and hopefully.  Millie O

[Kathleen_Mc]

Millie:
So sorry you've had to join our club but welcome.
The doctor's you have seen have suggested watch and wait for now and that is suitable given the small size of the tumor.
The symptoms you are experiencing are very typical with the condition and when it first starts many find it most upsetting, with time many find these things become less disturbing. Keeping active will help the opposite "balance nerve" learn quickly to compensate for what the effected one isn't able to do anymore although right now when you're feeling dizzy you likely don't feel much like "being active" I bet!
I can fully understand the desire to "just get it out", I too was the same way with my second tumor (the first one was so big it was "hurry up and get on the table before you die") and it was purely for psychological reasons it was removed when it was, I couldn't take being in "watch and wait" any longer.
Many patient continue to experience the ringing in the ear post-op, some in fact don't get that until after the surgery, so don't go with the idea the surgery will resolve this issue, it may not. Over time you will learn to ignore it. I myself didn't develop this until something like 15 years post-op, I perceive the sound to be in my functioning ear though, I really only notice it when I lie down to go to sleep.
Take care, Kathleen

[CHD63]

Hi Millie .....

Welcome to our relatively small group, in as much as having an acoustic neuroma is still considered a rare occurrence.

I, as well, am a retired junior high school teacher so I can relate to your comment about Cafeteria noise.   

Hearing the diagnosis of an AN is indeed a scary situation.  All emotional security seems to go completely away for a period of time.  You are doing the right thing to educate yourself and take time to breathe before making a treatment decision.

Try to get several opinions.  There are several excellent medical facilities around the country who give free consultations if you send a copy of your MRI and audiogram to them.  This is for possible surgery or radiation treatment.  I sent mine to House Ear Institute in Los Angeles and am so glad I did.

Many thoughts and prayers as you walk through this decision-making phase of having an AN.  Ask any questions from us that you may have.  We are not doctors, but our collective experiences tell a great deal.

Clarice

[millie]

Thank you Clarice and Kathleen. Thank you for telling me the ear ringing, fullness, and out of head experience  are normal sensations.  Your assurance helps me handle that.  I feel pretty alone. I can accept hearing loss too.  But just as a hopeful aside, does it ever come back after surgery or radiation?
I think it is interesting that driving is not a concern.  I will send a copy of my MRI to House . I am one hour from NYC, and will probably use doctors there,  but it would be good to have the House  opinion.
Next I must look into insurance matters.
There is a symposium Saturday March 31st at NYU at 1 p.m. 
Hanging in and hanging on-
Millie

[Chances3]

Hi Millie,

I'm sorry to hear you have an AN, but you have come to the best place where you can share with people who have similar experiences and problems.  As Clarice pointed out, we're not doctors, so we leave the medical advice to the professionals. 

I always share a little of my experience, but clearly this post should be about you.  I was suffering from full spin vertigo attacks, they were getting more severe and increasing in frequency to the point where I would suffer every 5-8 days.  They were very debilitating and I would be sick for a couple of days.  I felt I didn't have the luxury to wait, so I chose surgery immediately.  Dr. Roland and Dr. Golfinos were my surgeons at NY Medical Center.  I didn't "shop" around as many people might suggest from this site.  I asked them a simple question, how long have you been doing this and how many have you done.  I felt confident that I was in capable hands.  My ENT recommended their procedure called a Middle Fossa approach to preserve hearing.  My results have been great, I have about 60-70 percent hearing and vertigo attacks seem to be gone.  I still suffer with balance and visual disturbances which might be something I will have to live with the rest of my life.

Enough about me - ringing in the ear is very frustrating, and it has gotten a little worse since the operation.  To help it you might try the following, get on a diuretic, stay away from all types of salts like nitrates, sophates, sodium, MSG etc.  Stop all caffeine and alcohol, and if possible, try to get quality sleep. 

As was already posted, learn as much as you can, get other opinions from other doctors so that you can make the correct choices for yourself.  I know all of this must be very frightening to you, but be brave and have confidence in yourself.  Keep in mind whatever you ultimately chose to do has to be your choice because it will be something you have to live with the rest of your life.  I am a man of faith and so I will finish by saying that if you are a woman of faith then pray that God will guide you, and give you the wisdom.

I wanted to attend the AN meeting this Saturday, but I have something else to do.  Lauren who is heading the group is a wonderful woman who spent the time to listen to me when I need someone to talk to.  Feel free to send me a personal email if you need someone to talk to.

My motto is this " Don't think of the past or you'll never make plans for the future".

God Bless

[Mickey]

Hi Millie! I see that you have joined our W+W AN club. Being in that same club going on 5 years now I think you made a wise choice to start with. Also a great idea is to get to the meeting on Mar. 31. I have been there and reccomend it highly and wish I could make it this time. Also read the posts of the W+W brigade here to get some insight on what to do while W+W-ing. Over the past 5 years my AN has been stable and I`ve actually gradually felt better than when first diognosed. Stay positive! Wishing you the best...Mickey

[millie]

Thank you, Mickey, Chances, CHD63 and Kathleen!
This forum is a blessing. 
I need to learn how to post properly as there are so many issues and experiences  forum folks have had that I can identify with.  I apologize in advance for not posting properly.
Thank you for the heads up on Dr. Roland.  I picked up some more copies of my MRI and will send them to HOUSE  although that is cross country as I am on Long Island. I have also seen a Dr. Smouha and Dr. Post at Mt. Sinai in NYC but only Dr. Roland said I could email him about any concerns.  I guess I am still looking for my doctor.  I hope this thing doesn't grow too fast while I am watching and waiting.  If I can save anything or stave off trouble, I'd like to. 
Looking forward to tomorrow's symposium at NYU.
God bless us, every one. (Tiny Tim)
Millie

[YACEAS]

This might be very small consolation, but it helps me to not freak out about a tumor in my head: the tumor is composed of ordinary cells (schwann cells) so I don't think of it as a foreign object but rather as an abnormal bunching up of something that is throughout my body anyway.

[millie]

Hi all,
Last Saturday, I attended the support group meeting at NYU-I had incorrectly called it a "symposium."  It was very informative, with people of various experiences, stages, treatments, and I was very encouraged that "there is life after acoustic neuroma." I am going to the next meeting which is June 9th even if hell freezes over.
I have been raking leaves and clearing briars in the hope of speeding up the right side of my balance system so it compensates for the left side.  Several willing to talk people have encouraged me that this would happen.  The ringing in my left ear was constant yesterday.  I think it gets worse after stress or too much concentration on conversation.  The fullness in my left side is usually there so if I keep really occupied, I get my mind off it. Last night there was a women's group meeting at my church ( decided to go) and we prayed for hope strength insight and physical and emotional well being for ourselves and loved ones.  Lots of people have big issues going on in their lives.  However I would love to get rid of the "full" feeling in my head.  Some of you that have had surgery have kept whatever hearing, though it may have not been useful, was left in that ear and the pressure inside seemed to go away.  I would love that.
I was glad that "they" rescheduled my ABA hearing test for April 18th.  I will sent the results to two ENT's and see if they concur as to treatment. 
Thanks for the support-Millie

[pjb]

Hi all,
Last Saturday, I attended the support group meeting at NYU-I had incorrectly called it a "symposium."  It was very informative, with people of various experiences, stages, treatments, and I was very encouraged that "there is life after acoustic neuroma." I am going to the next meeting which is June 9th even if hell freezes over.
I have been raking leaves and clearing briars in the hope of speeding up the right side of my balance system so it compensates for the left side.  Several willing to talk people have encouraged me that this would happen.  The ringing in my left ear was constant yesterday.  I think it gets worse after stress or too much concentration on conversation.  The fullness in my left side is usually there so if I keep really occupied, I get my mind off it. Last night there was a women's group meeting at my church ( decided to go) and we prayed for hope strength insight and physical and emotional well being for ourselves and loved ones.  Lots of people have big issues going on in their lives.  However I would love to get rid of the "full" feeling in my head.  Some of you that have had surgery have kept whatever hearing, though it may have not been useful, was left in that ear and the pressure inside seemed to go away.  I would love that.
I was glad that "they" rescheduled my ABA hearing test for April 18th.  I will sent the results to two ENT's and see if they concur as to treatment. 
Thanks for the support-Millie

Hoping to meet you at the next meeting I had gone to one and missed this last one I was not aware of it (I think) or I might have forgotten...haha....2 wonderful leaders and one of them is a wife of an AN'er and she has devoted her time as our advocate...I still have the fullness after surgery I guess because a small piece was left if it was all removed wondering if it would be gone...The tinnitus cannot adjust to that yet hoping one day I can get past it...A little upsetting because I did not have it after surgery I developed it 3 months later so that was a shock some people get it before or right after surgery. Good luck with your test on the 18th will be looking for your post.

Best Wishes,