Author Topic: Welcome a new member to this AN family  (Read 5932 times)

Musicman

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Welcome a new member to this AN family
« on: February 11, 2007, 12:23:45 am »
Hello everyone!  I received my official "diagnosis" in the mail on December 16 of 2006--the day after we teachers went on Winter Break.  Quite a shock.  I had the MRI about 2 week prior but could not connect with my doctor during office hours to get the results.  I have had almost 20 years of hearing issues.  A couple of bouts of dizziness where I could not get on to my feet out of bed, but was prescribed predinoze at that time.  The ringing in my ears is almost unbearable.  It is actually only in the ear on the side of the AN but it is so loud I had always assumed it was in both ears.

Mine is fairly small compared to some, between 5 and 12 mm depending on the place one chooses to measure.  (Apparently some doctors don't count the measurement of the AN that protrudes into the inner ear canal.  I was initially told that surgery was about my only option.  However, after poking around the ANArchive for awhile, I began to look into radiosurgery options.  This has led me to get an appointment with Dr. Chang at Stanford (only about 10 miles away).  So, I have that appointment on the 13th of February (Happy Valentine's Day!) followed by an appointment with a Kaiser neurosurgeion on the 26th.

My big concern is side affects of either treatment.  I am a music teacher in a public school who is already struggling with some hearing loss, and now I have to look at what might happen post surgery.  And this was on top of getting my Administrative Credential.  I have to put some of my important life goals on a hold cycle until this thing in my head plays out one way or another.

I have read many of the postings on the Archive over the last two months.  Anybody want to re-offer a list of questions to ask a potnetial radio or neurosurgeon?

Thanks for any feedback!
17mm (still nice and small!!)
Received Diagnosis December 16, 2006
Currently scheduled for CyberKnife week of March 26, 2007

Lorenzo

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Re: Welcome a new member to this AN family
« Reply #1 on: February 11, 2007, 06:20:50 am »
HI Musicman,

I was treated by Dr Chang about two years ago! You're in very good hands if you're thinking of going to him for Radiosurgery.

In my case I lost an extra 5% of hearing on my AN side, so got slightly worse. Tinnitus is slightly louder, on and off, depending on how tired I am, or the weather, or if a buterfly flaps it's wings in China! :) Recovery from CK wa an up and down affair intitially, causing me to scael my leacturing activities considerably. However, I found that after about 8 months I was back to normal, and possibly better than before treatment.

For me recovery was not that easy, mainly on the emotional and cognitive side of things. Not everybody has that kind of problems, or not as bad. Some come through with no side issues at all.

The only issue I have now is noise. I am very sensitive to noise and had to get a separate offcie as a class room so I could deal with students. Class rooms are now just too noisy for me. But that's more to do with the tinnitus than the AN I suspect. I don't think it's CK related as other ANers have the same problem after surgery.

Also, remember that when you see Dr Chang, he also is a surgeon who performs surgery on ANs regularly. So he can probably answer your questions from both points of view. IT's important to get the best advice you can from each speciality, but you probably know that already.

All the best,

Lorenzo
« Last Edit: February 11, 2007, 07:01:47 am by Lorenzo »

kat

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Re: Welcome a new member to this AN family
« Reply #2 on: February 11, 2007, 06:53:00 am »
Hi Musicman

When I chose to have GK here in the UK one of the reasons for my choice was preserving the hearing that I had left on the AN side . As it has turned out 21 months later my hearing has stayed the same and I still get a satisfactory stereo effect when listening to music and going to see shows .  I wish you luck with your decicion and hope that you will get an unbiased opinion about which treatment to go for .

Best regards Kat 
2.2 cm AN diagnosed July 2004 . GK at  the Royal Hallamshire
Sheffield UK in April 2005 2nd MRI in December 06 showed signs of the AN shrinking and MRI in FEB 08 showed no change . SO FAR SO GOOD .

Obita

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Re: Welcome a new member to this AN family
« Reply #3 on: February 11, 2007, 05:07:20 pm »
Hello there and welcome Musicman:

First off, I can't believe you found out you have an AN by getting the diagnosis in the mail???????  Thats not very nice.  At least my ENT had the words benign out of his mouth within 1 second of saying "tumor".  I knew something was up when there was a doctor on the phone at 7:00 pm on a Friday night.....etched in my memory forever, that phone call.

Sounds like you have the ball rolling in the right direction.  I have heard many, many good things about Dr. Chang.

There is a list of questions on this site.  Click on the Acoustic Neuroma Assn. logo at the top right.  Click on Overview and it will take you to the Questions for Physicians.

Good luck with your appointments and please come back and let us know they go.

Happy Valentine's Day - yikes, another right before Christmas diagnosis - kinda put a damper on the holidays, I bet.

Kathy

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Musicman

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Re: Welcome a new member to this AN family
« Reply #4 on: February 11, 2007, 05:58:02 pm »
I was NOT aware that Dr. Chang did surgery as well.  That's good to know.  Thanks for pointing that out.


========
Also, remember that when you see Dr Chang, he also is a surgeon who performs surgery on ANs regularly. So he can probably answer your questions from both points of view. IT's important to get the best advice you can from each speciality, but you probably know that already.

All the best,

Lorenzo

[/quote]
17mm (still nice and small!!)
Received Diagnosis December 16, 2006
Currently scheduled for CyberKnife week of March 26, 2007

mykey

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Re: Welcome a new member to this AN family
« Reply #5 on: February 11, 2007, 07:27:53 pm »
Musicman,
 I feel your pain. As a guitarist of 35 yrs. +, the thought of losing ALL of my hearing in my right ear was and still is (I have not had surgery yet) a rude awakening. As small as your AN is, I do think your possibilities of conserving your hearing are much better than someone like myself (rt. side 2.5 CM). Although I will be talking this week with Dr. Mattox & Dr. Olson about my candidacy for using CK rather than microsurgery.
I have heard (no pun intended) that many times post op patients will report a significant increase in the clarity and precision of their non AN side once the defective hearing is removed (ie: Translab).
Hearing loss is not determined exclusively by the size of the AN, but rather by combination of size, location and individual physiology.
I believe that discovering your tumor at this stage (small) is a blessing to you. And that you should (and hopefully are) take this time to investigate, learn and weigh all of the available options.
The slow growth of these tumors is one of the few positives about the diagnosis.

Bless you,
Mykey
Diagnosed  1/20/2007. Right side AN 2.5 cm
50yr, guitarist for 35 yrs.
Married w/10yr old son.
Translab 4/26/07 at Emory University performed by: Dr. Mattox & Dr. Olson
Surgery successful!
Extended time in ICU due to CSF leaks.

ppearl214

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Re: Welcome a new member to this AN family
« Reply #6 on: February 13, 2007, 08:58:49 am »
Hi Musicman and welcome.  I'm glad you found us here and if you have been poking around here, I'm sure you have noticed a wealth of info at your fingertips!

I had my CK at Beth Israel in Boston 10 months ago. I had my hearing test last Friday and my hearing is back to 100% of what it was at time of treatment (just below the normal range but most definately usable!).  Yesterday, I had my 10 mos post-CK MRI and met with my CK team. My tumor is dying a lovely death and on track. 

With Dr. Chang, I know you are in fantastic hands (if this is what you choose). Regardless of what decision you make, know that we are here to support, cheer you on and help you along this AN journey.

Again, welcome!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jeff

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Re: Welcome a new member to this AN family
« Reply #7 on: February 13, 2007, 09:39:23 am »
Hi Musicman,
I can relate to your fear about hearing loss. I had been a middle school band instructor for 15 years when I was diagnosed with NF2. I taught band after I had one of my tumors removed. I have to say that it was a frustrating year. Essentially, I was frustrated in my inability to locate the source of a sound. I had spent so many years developing the ability to listen, identify a wrong note, and immediately identify the location from which it came. I could look at the student's fingers and see what they were doing incorrectly. After the surgery, I could not do this. Since I have NF2 and deafness was likely, I chose to move into another position. I suppose, if I had continued teaching band, that I would have developed other strategies. I think that Mykey makes a good point about hearing loss. I am a good example. My remaining AN is 3.5+ cm., yet my speech recognition is 100%. I also agree with others who have suggested that you take the time necessary to investigate all of your options, weigh them in light of your personal priorities, and then choose your mode of treatment. I wish you the best on your journey!
Jeff
NF2
multiple AN surgeries
last surgery June 08

Shrnwldr

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Re: Welcome a new member to this AN family
« Reply #8 on: February 13, 2007, 10:16:56 am »
Obita... Oh my goodness I found out about my tumor exactly the same way.  My ENT attempted to call me several times during the day and left messages......  I didn't think anything about that until he called me at 7ish in the evening.  And he too said tumor benign almost in the same breath.  He also kept repeating "benign" throughout the whole phone call. 
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

Battyp

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Re: Welcome a new member to this AN family
« Reply #9 on: February 13, 2007, 06:36:27 pm »
At least you two got a call mine waited two weeks to break the news even after I called him and asked.  HOW RUDE!  I can't even imagine getting a letter in the mail.  The annual letter from the gyn is bad enough!


Musicman you had your appt today..how'd it go?

M

pearchica

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Re: Welcome a new member to this AN family
« Reply #10 on: February 19, 2007, 07:42:36 pm »
Welcome to the AN band Musicman!

Yeah: nothing like being diagnosed with a tumor- my ENT left a message for me on my cell phone which I had left in my car (just asking me to call back)- only to have my primary care physician call and break the bad news as I forced her too.  BENIGN the word I zoned in on and I repeatedly asked my primary care that this was the case.  Of course all before Christmas!

Musicman: I had a FABULOUS experience at Stanford's CK center with Dr. Chang.  Although he will be your initial consultant, should you go the radiation route- Dr. Solstys and Larry Chang (I call him the machine guru) will be the ones you most likely will deal with.  They are wonderful- Stanford is wonderful.  And if you do the surgical route- Chang will be great as he has back up with Jackler (head of ENT).  I wish I had gone to Stanford right away and dealt with Chang right away- (he was my fourth visit).  The industry is very surgery biased as cyberknife is a relatively new procedure (around since 1999). Check out Mark's thread-also his experience on the cyberknife support website.

I think I hear slightly better post CK treatment but really I don't know that.  I do have some ringing- but only at day's end and it is muted compared to the majority of our AN'ers I think.  Prior to CK I had 92% speech discrimination- it's that lower frequency range that my husband uses that I have a hard time hearing ( and I really did think it was him not ennunciating)!

Hope all went well with Stanford- take care, keep us posted- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Musicman

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Re: Welcome a new member to this AN family
« Reply #11 on: February 25, 2007, 04:25:15 pm »
Thanks for the encouragement.  I actually got back in to teaching as a track towards administration.  I have my Master's in Education Adminstration.  I, too, have had more difficulty locating the wrong notes.  My adaptation is to spend more time visually looking for clues: student responses to the person next to them, players stopping, or wrong fingers.  I don't believe I will be able to continue, even if my hearing remains the same.  Fortunately, my principal has been very supportive.  (The kids and parents don't know...which is why I choose not post my name here!)  I was astounded as to the difference in sound when I went to hear the High School band.  They weren't all that good....until I cupped my hand to my bad ear and all of a sudden the parts became more alive.  I do some performance work on the organ and we use in the ear monitoring.  I am hopeful hearing aides may help out somewhat in that I can currenlty balance the sound by boosting my bad ear signficantly.  Time will tell.

Again, thanks for the personal sharing.
17mm (still nice and small!!)
Received Diagnosis December 16, 2006
Currently scheduled for CyberKnife week of March 26, 2007

Musicman

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Re: Welcome a new member to this AN family
« Reply #12 on: February 25, 2007, 04:32:40 pm »
Thanks for asking...

Appointment went very well.  I met with Dr. Chang and his associate.  It is interesting how different doctors "measure" the length.  I had the first diagnosis consultation say it was 12 mm.  The first appointment consultation with my Kaiser doctor said 6mm because he doesn't count the portion in the inner ear.  Dr. Change said 17 mm.  All of them were using the same MRI!

Anyway, Dr. Chang says that he normally radiates 19mm-2cm, so mine is definitely smaller than his normal critter.  I asked about "down" time after surgery and he gave several examples of people who went right back to work the same day.  I asked about reallyl "serious" complications and he said the rate is about 4 in 10,000.  I am feeling pretty good about those odds.  I now have to get ther referral from Kaiser.  I meet with the Kaiser neurosurgeon tomorrow, February 26.

Things are looking hopeful from a treatment standpoint.  It's early and it's small, and I'm "young" at age 45.

17mm (still nice and small!!)
Received Diagnosis December 16, 2006
Currently scheduled for CyberKnife week of March 26, 2007

 


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