Author Topic: I was just diagnosed last week and am somewhat overwhelmed  (Read 6172 times)

waypoint

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I was just diagnosed last week and am somewhat overwhelmed
« on: September 05, 2007, 08:53:21 am »
This is my first post. While I hate the fact that I am here, I am happy to have found this place.

My experience started about a month ago when I suddenly lost hearing in my left ear and suffering from the ringing.  Steriods from the ENT doctor brought back the hearing but the ringing he said would take longer. He ordered an MRI to be sure. Well, the MRI revealed a what they termed "large" 1.4cm acousitc neuroma on the 8th intercranial. At 36yrs old. This was alot to take in last Tuesday. Now that I have had a week to think about it, I should have recognized the signs. I occasionally get mild headeaches, and my wife has gotten use to carrying advil in her purse just from me. The specialist, Dr. James S. Toung, M.D.  with Texas ENT, has referred me to another specialist at the Texas Medical Center. Doctor C.Y. Joseph Chang, MD FACS.  Is anyone here from Houston. I would love to hear who you went with and your outcome. My doctors appointment is Thursday morning to discuss the AN and go over options.  My goal or expectations are 1. remove/kill tumor, 2.maintain quality of life (2a. no facial or nerve damage, 2b. perserve hearing in left ear.)

At this point, I am so overwhelmed. The internete has been a wealth of information, but not always good information. It seems that every approach has complications and everywhere I read on the internet people have problems.  I am trying to read as much as possible now that I have found this site. My insurance has been a problem for me. For that I am thankful. I guess I just need a little direction or guidance. Specially from anyone that has experience local in Houston. Thanks.

 :-\
2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

Palace

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #1 on: September 05, 2007, 09:12:45 am »
Waypoint,


I'm not located in your area however, I'd like to respond to your initial problem so that you have the contact when, you are feeling somewhat "alone."  I realize that you have a wife and some support.

There will be people posting who have experience in the Houson area.

I had Cyberknife last year.  Please continue your research and all your options. 



Welcome to the forum...



Palace
« Last Edit: September 05, 2007, 09:57:30 pm by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

macintosh

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #2 on: September 05, 2007, 09:33:51 am »
A few points for perspective: a 1.4 cm AN is not "large," and you have plenty of time to gather information and make a decision. The normal rate of growth for ANs is 1-2 mm a year, and the cutoff point for radiation is about 3 cm (which is also the generally used, though unofficial, point at which ANs are called "large.")

Everyone on this list recognizes the feeling you have right now of being overwhelmed with this news, but as you learn more and get control of this situation, it does get easier. I'm sure people from Houston will write in soon with more specific info and help. Above all: Do not feel as though you have to rush into anything. The more you learn, the better able you will be to make the best decision for you.

Mac

Joef

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #3 on: September 05, 2007, 10:43:11 am »
around here ... 1.4 is small ! :D

Welcome to the group ... continue to research your options .. and Life does go on !! I just bought a used Kayak I can't wait to take it out this weekend !!
« Last Edit: September 05, 2007, 11:01:35 am by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

sloxana

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #4 on: September 05, 2007, 11:05:47 am »
Hi Waypoint

I was just diagnosed in July with an AN the same size as yours.  I remember feeling scared and overwhelmed and I didn't know what to do.  I was so sad and depressed.  Luckily I found this discussion board!  The people here are terrific!  They will have lots of information for you.  Read their comments and keep an open mind.  Look in the Archive section of the discussion board too.  I found some valuable information there as well.

Sorry I am not in your area but I agree with Macintosh....take your time making a treatment decision and don't rush into anything.  Ask LOTS of questions, research all your options and get several opinions from different doctors.  I started out thinking I would have to have surgery but the more I researched I found out I had other options available to me too.  I plan on going with radiation.  But that's just me....every person is different and some feel better going ahead with surgery and others choose to watch-and -wait.  But no matter what you decide we are all here for you!!!

Good luck to you!
Susan
1.9 cm AN
Diagnosed Jul 9 2007
Surgery will be 9/14/10 with Dr. Haynes and Dr. Thompson at Vanderbilt

Jim Scott

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #5 on: September 05, 2007, 11:59:44 am »
Hi, waypoint:

I'm sorry you have a reason to be here but welcome, anyway. Unfortunately, I'm a long way from Texas and cannot offer any local recommendations as to doctors or medical facilities.  I'll just offer you some information, advice and hopefully, perspective.

Feeling overwhelmed when first diagnosed with an acoustic neuroma tumor is normal.  Most of us have been in your situation and can relate.  However, knowledge and understanding of your options for dealing with this problem will eventually help to alleviate your very justified concerns.  It certainly helped me (and many others). 

Your AN is relatively small and can very likely be treated with non-invasive radiation.  Ask your doctor about this.  The cold, hard fact remains that, yes, even non-invasive treatment (radiation) carries some inherent risks.  There is no treatment that any responsible physician can guarantee will not carry some possible adverse consequences.  The trick is to read the literature available on this website (and elsewhere) that can show you the 'odds' of hearing loss, facial paralysis and other problems associated with AN treatment, including radiation.  You'll be surprised by how much the odds are actually in your favor.  However, this condition (AN) always leaves some residual effects, even if they are relatively mild. 

Maintaining our quality of life post-treatment is always a paramount concern.  I was adamant about that - and my AN was almost 3 times larger than yours and required both surgery and radiation.  However, I came through the experience with my quality of life pretty well intact.  Unfortunately, my hearing in the AN-affected ear was lost prior to my diagnosis and is not going to be restored.  You are fortunate to have an AN diagnosis while the tumor is still fairly small and your hearing is usable.

Please understand that forums such as this will have a wide variety of AN patients from around the nation and even the world, posting messages.  Occasionally some of those folks will suffer from severe post-op complications.  This forum allows them to vent, seek solutions and to just have an understanding 'audience' that can personally relate to their suffering, concerns, fears and frustrations.    The popular cliché is 'we're all different', and it remains valid.  AN patients - men and women - come in all sizes, ages, nationalities and economic backgrounds.   Some undergo surgery, some radiation, some both.  Yes, some have complications but some come through their AN experience relatively unscathed.  There is no 'typical' AN patient. 

The best you can do is to become educated, learn about all of your options, go slowly - don't allow any doctor to 'push' you into a specific treatment - and make an informed decision as to how you'll address this medical problem.  We're here to help in whatever way we can.  I wish you all the best and hope you'll find the answers you seek, soon.   :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

waypoint

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #6 on: September 05, 2007, 12:32:09 pm »
Thanks to everyone so far that have posted. I tried to make it not as big a deal as it was, but my wife is devastated. She feels somewhat helpless. She is concerned about my health and safety.

Those of you that went through radiation or FSR, did you still lose your hearing on the AN side? Also, was it successful in killing the AN?
2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

Patch

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #7 on: September 05, 2007, 12:48:47 pm »
hi,

          I was told I had a AN 1.2cm in May and under went Radiation in July. I had 3 low dose treatments times 2 weeks. Its been almost 2 month's since my first treatment. So far, things are good, I sometimes have balance issues ( maybe 2-3 times a month ) an occasional headache that Tylenol takes care of. I have a follow with the Dr. in Oct. and another MRI in December. I hope this thing is dead.

         I remember first being told I had a AN. I was scared, depressed and didn't know what to do. I thought my life was coming to a end. The people here are great and have helped me alot. Now, I have come to a to realize, that, this AN is now apart of my life and will be with for for years to come. Stay strong and let us know how things go for you.


Mark

Delaware, OH
Radiation 7/07 for 17mm AN, Had my 2 year MRI 07/09, An now 13mm.

Pembo

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #8 on: September 05, 2007, 01:07:11 pm »
Another person saying that what you and your wife are feeling is normal. AN's are usually non-life threatening. You have time to research your treatment and the outcomes are mostly positive.

Yes there is a lot of negative information on the web but remember that a lot of people who have had good outcomes don't post a lot. Although there are quite a few of us here that are "old-timers" with good outcomes. And I'm not old, only 39, surgery was 3 years ago.

Read a lot, get information from the ANA, ask the doctors lots of questions! A good doctor will be patient with all of your questions, no matter how trivial they may seem. My doctors encouraged questions, any time.

Stay strong....and welcome to our elite club. :)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

mema

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #9 on: September 05, 2007, 02:14:37 pm »
I had 25 treatments FSR in Nov-Dec 2005.  My 18 month MRI showed it 2mm smaller.  I did loose my hearing on AN side 5 months post treatment.  But thats little to pay for stopping a tumor..  There are many options available to you including to wait and watch at least for awhile.  Although you both are feeling overwhelmed, know  that this forum is a wealth of information.  I wish I had found it before my treatment.  I would have wait and watched for a little bit. Get consults from numerous doctors until you feel comfortable with one and their treatment.
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

leapyrtwins

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #10 on: September 05, 2007, 04:05:40 pm »
waypoint -

welcome to the world of ANs!  I'm surprised that the doc said your AN is large.  Mine was originally 1.5 cm and I was told it was medium.  The key to treating your AN is two-fold - #1 be informed and #2 find a doctor with lots of experience.  As someone has probably already suggested, if you haven't already, contact the ANA and request information - it's easy to understand and extremely helpful, plus it will explain all your options to you. 

I'm older than you (45, soon to be 46) and had retrosigmoid surgery on 5/31/07, and I'm alive and kicking - so tell your wife not to worry  :)

There is life after an AN - sometimes it's a little different, but it's life nonetheless.

Good luck,

Jan
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

Desilu

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #11 on: September 05, 2007, 04:27:44 pm »
Hi Waypoint,

You have been given lots of good information. About the only thing that I can add at this point is to pray about your situation. Ask God to help you make the right decision. We are behind you 100% and will help you with whichever treatment you decide on.

I had surgery 2 years ago at the age of 46 and retained 90% of my hearing. Other than some tinnitus (ringing in my ear) life is back to normal. If I can help in anyway, just send me a personal email. I wish you the best!   Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

goinbatty

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #12 on: September 05, 2007, 06:58:23 pm »
I too am a firm believer in prayer.  When I was first diagnosed and after getting over the shock of being told I have a tumor, I felt blessed that it wasn't cancer I would be dealing with.  Then I found this forum for which I will forever be thankful for.  After finding out recently that the tumor had grown, unfortunately I was dealing with other major life stressors and freaked out for a few weeks.  With support from friends, family and of course everyone on this forum (whether they knew it or not), I've calmed down again and am back to methodically researching what will be the best for me.  When first diagnosed, I strongly leaned toward surgery.  However, since that time I'm now leaning toward CK.  But like everyone has said, there are many options and you just have to find what is best for you.  I'm still fairly new to this forum but find something new and informative every time I get on.  So take a deep breath and take your time reading and researching. 
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Mark

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #13 on: September 05, 2007, 09:06:23 pm »
Waypoint,

In answer to your question:

Those of you that went through radiation or FSR, did you still lose your hearing on the AN side? Also, was it successful in killing the AN?

My story is on the CK patient support group web site at http://www.cyberknifesupport.org/mark.html and that might be helpful for you. Going into my 6 year MRI in November my hearing has been unchanged since treatment and the AN is roughly 25% smaller and looking pretty dead according to my doctor.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Sue

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Re: I was just diagnosed last week and am somewhat overwhelmed
« Reply #14 on: September 06, 2007, 01:21:34 am »
Hi Waypoint,

Welcome to our little club and so sorry you have to join us.  But...as you've seen there are a lot of great people on here who are ready and willing to answer questions and to offer support in this unexpected journey you are about to take. 

I had Gamma Knife and it is killing my AN.  This is not a fractionated procedure like some are such as CyberKnife, but a one time dose and it involves a headframe that holds your head still.  Not entirely pleasant, but they give ya good drugs! Mine is a 2 cm tumor (I really hate that word!) and I was told it was medium sized. My hearing went fast, so hearing preservation wasn't much of an issue, although I do still have some hearing in my AN ear. It has taken awhile to get used to the symptoms that I have been left with, such as the hearing loss, tinnitus, and trigeminal nerve problems which means that I have facial numbness on my AN side.  Not debilitating, but certainly annoying, to say the least. We all have something...mostly some degree of hearing loss and often tinnitus. 

I wish you the best of luck in your treatment and eventual recovery.  I know we have some Texas people on this forum and I'm sure they will chime in soon. 

Kindest regards,

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode