Author Topic: Just was diagnosed with Acoustic Neuroma yesterday...need friends!  (Read 10410 times)

MaryBKAriz

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 Hello from a Newbie in Arizona. I just got the news yesterday from my ENT that my MRI showed the AN in my right ear. I am lost right now and I see a specialist tomorrow and don't want to be an idiot. I have read a lot in the last 12 hours but I don't have the insight of someone who has "been there". I am having a fair amount of hearing distortion, ear pressure, imbalance, dizziness and occasion . No facial symptoms, though, I am thankful to say. I appreciate finding this sight. I live in Chandler and will be seeing a physician in Phoenix who is connected with the Barrow Neurological Institute. I have never heard of this condition before. Since I knew I had a problem I am basically relieved it isn't malignant, but not happy with some of the decisiions, outcomes, procedures ahead. Thank you for listening.  Mary :)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

robynabc

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #1 on: March 25, 2008, 04:14:40 pm »
I am sorry to hear  about your AN.  Can you tell us how large it is?  That will help.  Also,  I heard Barrow is a really great facility from someone on this forum.   Good luck 
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

MaryBKAriz

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #2 on: March 25, 2008, 04:20:45 pm »
Thank you for answering. I was told it is small...about 11mm. I think from what I read this may give me options. I also Have Systemic Lupus so I don't know if that will come into the mix or not. I am to see a Dr Daspit. I know I will know more tomorrow, just thought I'd see if people had and suggestions of questions or feedback. I know each case is different. I am doing well with this I think, it is more those around me that seem upset. I take care of my 87 yr old Mom and a sweet family, great neighbors.  Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #3 on: March 25, 2008, 04:21:13 pm »
Mary -

you'll find lots of friends here.  A truly great group of people  ;D

Making a treatment decision is probably one of the hardest things you'll have to do.  Make sure you do your research, ask a lot of questions, and do what you think is best for you.  The size of your AN should give you the possibility of radiation or surgery, so ask the specialist about each treatment.

Feel free to ask us anything - either here on the forum or through PMs.

Also, this forum has a very nice "search" feature, so if there is something specific you are wondering about search for it and you'll most likely find lots of relevant posts.   

Jan
« Last Edit: March 25, 2008, 04:23:03 pm by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #4 on: March 25, 2008, 04:24:37 pm »
Thank you, Jan. I guess I don't know what to ask or what to look up. I have read a lot in the past 24 hours. I like this website for its full spectrum approach to addressing this. I definitely know more but am in overload, perhaps. Great to have people to share with.  :)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #5 on: March 25, 2008, 04:28:02 pm »
Hi Mary-

And welcome to our little "club."  I'm only a few weeks ahead of you - got my diagnosis exactly 3 weeks ago.  You're doing the right thing - seek out professional (medical) opinions, read as much as you can, talk to others on this forum who are further along in their journey.

I've been very fortunate that I was able to schedule 3 consults in about two weeks.  My "Ethel" is too big for radiation, so I'm awaiting a date for translab surgery. 

Just keep looking forward and be kind to yourself - you will be fine.

Debbi - in NJ
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #6 on: March 25, 2008, 04:34:02 pm »
Thank you Debbi - you are an inspiration! I will be thinking about you. I feel optimistic but also want to be realistic. I am so glad it isn't malignant!  Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

tdworkin

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #7 on: March 25, 2008, 05:22:03 pm »
Welcome to our AN family of friends.
You are doing a good thing to check out drs. to hear what they have in mind. But remember, it's YOUR head. My experience was- 4 different drs. in four different hospitals had four, you guessed it, different opinions for treatment. And, yes, they all looked at the same MRI films. (I visited two in Philadelphia and sent my MRI CD to House Clinic in LA as well as Stanford U. Med. Center. Both Drs. Brachmann/Chang reviewed my films free of charge, then called me the same week/day with their suggestions-surgery/cyberknife- and both spent time answering my many questions. Kudos to them both!)
I know you've heard from other folks here to do your research, check it all out with drs. you trust, then decide for yourself. You will know with whom you feel the most comfortable. Ask all your questions- I wrote them down in advance- and take someone with you- it helps to compare notes.  It's amazing how you don't "hear" the same thing when it's YOUR body they're talking about. Someone you love/trust should be there, too. At least, I found it helpful.
I think the best advice I heard on this site, and it  turned out to be good for me, was to take your time to decide. These things typically are S-L-O-W growing. No one should talk you into doing anything quickly.
BTW, it took me from June to October to decide. I spent lots of time reading, researching, and talking to others who've "been there, done that." When I was ready, I went with Dr. Chang in CA. and cyberknifed the d@mn thing in November.
Best wishes and keep in touch.
Terry

LADavid

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #8 on: March 25, 2008, 05:38:06 pm »
Hi Mary
Welcome.  It's a shame that you had to find us the way you did -- but I assure you that finding us was a great thing.  I unfortunately didn't know about this group until two months into post-recovery, but it has been a Godsend since I came aboard.  There is a lot of advice and wisdom to be had here.  Being a bit cynical, more than you will find elsewhere.  You do have a relatively small AN -- it does leave you more options.  I know little about the others but I can give you whatever personal input you need on translab surgery.  And I've learned a bunch of stuff on post-op things -- thanks to this group.  There's even terminology from this group that you'll grow to appreciate.  For instance, you don't have an acoustic neuroma you have a brainbooger -- and more than a few people name them.  And don't worry about asking what may seem to be a silly question -- I know I did -- and always got a very rational answer.

Best wishes to you.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

MaryBKAriz

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #9 on: March 25, 2008, 06:05:55 pm »
Thank you gang! I feel better already about the brainbooger....hmmmm name??????? I will call it "Goldie" (for Goldie Hawn back in the Laugh-In days) That seems to fit what I have been calling myself - a dizzy dame. I have had such balance problems.  Thank you for my laugh of the day and Goldie and I will trudge on.  Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Kaybo

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #10 on: March 25, 2008, 08:17:12 pm »
Welcome from Texas, Mary!!
Hope that we can be supportive for you!!  Like, David  said, no question is stupid -- ask away!  Things are bit crazy for me right now as I am having some reconstructive work done Friday, but please feel free to contact me if you ever just need an ear!!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MaryBKAriz

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #11 on: March 25, 2008, 08:34:12 pm »
Where in TX K? I used to live in Round Rock and hubby of almost 40 yrs and I met at UT Austin.
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Kaybo

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #12 on: March 25, 2008, 08:45:54 pm »
NO WAY!  We used to live in Round Rock -- I taught school there (at Brushy Creek).  That is actually where we lived when I had surgery (but I had the surgery in Houston).  We had a Christian bookstore there!  We live in the Panhandle now -- I am from here.
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Glenda

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #13 on: March 25, 2008, 08:51:51 pm »
Hi Mary,
You asked for friends, you definetly have them here :)  Welcome, even though I am sorry you have to join us as a fellow AN'er.
I agree with alot that Terry has written, don't rush, get those free consults (those dr's are wonderful) and feel good about your decision.  I am currently a wait and watcher.  My AN is slightly smaller than yours but I am experiencing the same symptoms as you although I have tinnitus that won't hush  ;)  At times I really wish for a quiet moment but as you say I am soooooo thankful it is not malignant, I can live with the ringing....
I found this site that was given to me on this forum.  the questions are really good and I use them at consults.  Hope it helps.

http://anworld.com/questions/

Hang in there and we are here for you when you need us.  This site has been such a blessing to me!
Hope you have a good visit with the Dr tomorrow (which is fast, I had to wait a month to see a surgeon)
Sending hugs from SC...

Glenda

PS  What a wonderful name "Mary"

Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

robynabc

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Re: Just was diagnosed with Acoustic Neuroma yesterday...need friends!
« Reply #14 on: March 25, 2008, 10:07:53 pm »
Hi Mary,

Glad to hear that your AN is small. My son had a 4.5+ CM and we did not have nearly as much time as you.  We had to make a decision in about 3 weeks.  You have lots of time and I would take every bit of it.  I know someone emailed me about Barrow.  Here is the post.  This was our thread when we were researching doctors. 

http://anausa.org/forum/index.php?topic=3613.15


I believe the best way to guage a doc or facility is to talk to other ENT's and doctors about who they would go to if they had this happen to them.  I just wrote a post about what we did before surgery and you can see our posts back when we were asking advice from the very knowlegable people on this board. The good news is you have lots of time to make a decision.  I know it is hard to do this under duress.  That is why it may be best to let it sink in and then research as much as possible.  You might want to research Barrow under search too. 

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.