Newly diagnose ACOUSTIC NEUROMA

[crosspaws]

Newly diagnosed about 3 weeks ago going to loose insurance in July. Lost all most all hearing in left ear in 1991 no cause determined did have MRI at that time. Jump to November 2011 my head started to fell off like it does if I forget to take my Luvox along with headaches and up set stomach. I related some of the problems to my colitis or type 1 diabetes. My Dr. put me on PREDNISONE and FIORICET the next day with BG over 600 and on FIORICET  1-13-2012 I mangled the ends of my right hand index, middle and ring finger in a old snow blower. So it is hard to type well on the computer. (Just trying to explain why my typing is so bad).
Hand recover going slowly asked Dr. for MRI because of headaches and dizzy felling (my brother died of a stage 4 gleoma 2yrs back). It came back with 3 to 4 mm (small) ACOUSTIC NEUROMA Right AUITORY CANAL. (I use cut and past a lot that’s why the caps) Went to Michigan Ear Institute talked to dr.  LaRouere and he was very nice to my wife and I. My neuroma is close to the cochlear and that surgery would most likely lead to deafness in my only good ear (right). He was again I say vary nice but the bottom line “I was between a rock and a hard place”.  Now to the problem, he wants to put a CI in left ear before doing any thing with the neuroma (just got approved by insurance) than radiation GK on right ear neuroma. He thinks no matter what I do the hearing will be lost in r ear, I would never hear natural sound again. My ENT told me that in some cases hearing to some extent my return to the treated ear. It would not be so bad if I were not under the time constraints of losing my insurance. Not much time to make life altering decisions. LOOKIG for some input from others that might help me.

[james e]

I would probably go along with your doctor and get a CI put in first. Your brain needs to continue to "hear" sounds, and the CI can do that. Some folks here have had radiation treatment and retained their hearing in that ear, and others have lost it. If you loose your AN ear, then you will still have the CI. Truth be told, we are all between a rock and a hard place. At least you still have insurance, even if it is only until July. Get the CI done right away, and let your doctor know about the insurance, so you can get the AN treated ASAP.

Your typing is pretty good...just stay away from the snow blowers!

James

[PaulW]

There are a number of studies demonstrating hearing loss, related to the dose of radiation received by the cochlear.
I think it maybe worth exploring both GK and CK, and whether the treatment centre can come up with a treatment plan that exposes the cochlear to 4-5.6 Gy of radiation or less. If the radiation dose to the cochlear can be kept below 4Gy there is a very good chance of hearing preservation. Speak to the treatment centres about this.

[Suu]

Hi and welcome to the best place in the world for help and advice on ANs.

Thank goodness you've been diagnosed while it's small although I can feel your anxiety through your writing and the advice that Paul and James have given you is very good.

If you need a shoulder to lean on during this really trying time please come here and tell us so we can give you help and understanding.

I wish you all the luck in the world over the next few weeks, and beyond, and will watch for your next post.

Hugs,
Suu xxoo

[crosspaws]

i am not going to mess w/caps in writing its to hard on my fingers at this time. i cant say enough good things about mi ear every one has gone out of their way to help me knowing the problems w/ins and time. because at is a 3hr drive to them they do all that can b done in one trip. 4-17-12 arrive at 10am got out at 2:30 pm did all kinds of test. my favorite was the face shock test, you might think i am nuts to say that but head fun teasing the testers. we have a verbal from ins to go forward w/ci (not if i don't get it in writing) and going to take watch and wait on right side. the an looks to be in a vary bad location in the nerve bundle and tooo close to the col. any work on the an will result in loss of the nerve, no ci for r/side. every one at mi ear talks about this being very unusual case and i think feel bad about the options i don't have. it is the best place i could have gone just for the compassion of every one there. so with that said the ci is scheduled for 5-16-2012 and i look at it as a new adventure. i wish to  thank every one that responded to me and i guise we all know each other just by the shared feelings one goes though when diagnosed with some thing like this. thanks all Eric walker grand haven mi

[crosspaws]

any one live close to my location grand haven mi that i might talk to more one on one
thanks erix

[Suu]

Hi Erik.

Sorry I don't live there. I'm in Australia.

I think that some of us (me included) worry a bit about getting an AN on the other side and going completely deaf.  I've lost a bit of hearing in my good ear so I don't hold a phone of any sort to my head anymore.  If it doesn't have a speakerphone then I don't use it.  I don't know if that helps or not but it makes me feel like I'm doing something instead of nothing. 

If - and only 'if' - you, or any of us, are faced with being deaf we hope that we get diagnosed with the gremlin while it's small to give us time to learn sign language, learn to type and text, and get our fingers healed without any more accidents!  It would also give our family and friends the time and choice to do the same while helping any of us to cope.

We are not going to just talk on here and then go away for a month or 6 and come back while ever someone is facing a hectic time in their lives as you are.

Hugs to you dear mate.
Suu - from the greatest Land Down Under!

[crosspaws]

thank you so much for responding and support, it is a odd ailment that one might not ever know about until it happens to them or some one you know. it feels a little lonely out out here its one of though things that robes you slowly in many little ways. you may not die from it but you can wither slowly. i know its not the end of the world but as you know its not much fun. take care eric

[Tumbleweed]

Eric, I suggest you email Dr. Chang (Stanford University Medical Center neurosurgeon and leading CyberKnife [CK] practitioner) at sdchang@stanford.edu. He will review your MRI and other test data and consult you by phone for free.

Adding to the useful info Paul noted, CK usually preserves serviceable hearing when treating small tumors. The AN's close proximity to your cochlea may reduce your odds of serviceable hearing preservation, but Dr. Chang can quantify your risk, and a second opinion is a good idea. Generally speaking, CK provides a little better odds of hearing preservation than GammaKnife. Considering you are already deaf in one ear, I would advise you get CK to increase your odds of preserving your hearing in your right ear. Choose a doctor who has tons of experience with CK. If you can travel, Stanford University Medical Center and Dr. Chang are the gold standards for CK treatments.

Best wishes,
TW

[leapyrtwins]

Michigan Ear is a great place - very good docs and a wonderful reputation for treating ANs.

Good luck with the CI surgery; I have a BAHA, but my doc does both.  I've met a few people with CIs and they are very happy with them.

Jan

[crosspaws]

 am fighting on. Ins approved the ci set for the 16t it will not fix the problems with the an on r/side sand w/wait and watch who knows how long i might keep the hearing in thr r/ear i am looking forwarder to the ci on left side even tho i will be be giving up some natural hearing in that era. i am hoping that the benefits out weigh the losses. and is the weighting  thing to do. thanks for all the support from every one. sorry typing so bad. i hope some day i can figure out how to use the key board again

[Suu]

G'day Erik
Seems like things are beginning to happen for you in a positive way.
The biggest benefit of any surgery of any sort is that you'll be here to tell us about it.
Don't worry about your typing, it's totally understandable and readable. 

Please do keep journalling here so we know that you're doing ok and let us know how you're feeling.

Kindest regards,
Suu xxoo

[crosspaws]

i know i have not updated for some time but typing is a pain. i have been working 20 to 30 hr weeks for the last few weeks and that is not going will. i have to drive alto and its causing problems w/my colitis. the had issues are also made worse by driving and my finger stumps are sore. i have gone to using Norco 10-325 almost every day after work. I have gone over this w/my doc and as long as i don't eat them up or sell them he is OK w/it considering the situation. I got the hard copy from ins to get the ci and it happens the 16 in Novi MI, so the new beginnings start. it was hard for me to give up the limited natural hearing in the ci ear but i am hoping that the improvement it speech understanding will make up for it. I start the Disability procedures the next 2 weeks after ci. It will be nice to be home but until the money/ins stuff gets worked out it will still be stressful.

That,s it for now wish me luck on the ci on the 16th. 

[Suu]

Hi Eric - I have no idea why I've been spelling your name with a K. Sorry 

Good luck on the 16th mate.  We're all here hoping for the best.  Please take it easy on yourself and take it one day at a time.  It's easy for us to say that but it's the way to go in the long term.  Deep breaths in and out also work while waiting.

Come here as often as you need or want to and tell us anything you want or need to. 

Hugs sent across the ocean,

Suu xxoo

[leapyrtwins]

Good luck on the 16th.

Jan