Author Topic: JUST DIAGNOSED - DILEMA  (Read 3866 times)

RALPH178

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JUST DIAGNOSED - DILEMA
« on: October 14, 2007, 09:53:08 pm »
Ive been reading alot of posts from folks in the same situation as myself and just wanted to throw this one out there to get some opinions.  I'm a Sgt with a major Police Dept within this country and recently last week was diagnosed with an AN at about 2cm.  Ive been well informed by several Dr's and also read alot of posts and have been leaning towards radiosurgery.

About 2 years ago while on patrol my right ear suddenly started to lose hearing and everything started sounding like everything was under water.  A severe case of tinitus broke out also.  The next day I saw an ENT and they gave me a hearing test and immediately put me on steroids.  Within 2 weeks my hearing and tinitus was completely restored back to normal after a second hearing test and never went back for testing.

Back in Aug of this year over a span of 3 days the ringing came back and I had partial loss of hearing however not as severe.  There was also some minor numbness that fluxuated around the ear.  Needless to say I was sent for an MRI after a bout of steroids with no help or restoration.  After they diagnosed me with the AN they say I have had it for about 10 to 15 years. 

My dilema.... If I went for surgury they tell me I will be deaf in my right ear which will force me into an early retirement.  The job will survey me off.  If I go for radiosurgury I can do this on my own time without going sick.  I have 5 years to go till full retirement which would be a difference of over 15K a year for the rest of my life.  I have also been both a very active officer and Sgt effecting and supervising the arrests of over 300 felons and believe Im an asset and really do enjoy my job.

What would you do in my situation.  There is no right or wrong answer and Im pretty sure what Im going to do but I just wanted some views. 

Thanks and best of luck to all in the same boat as myself.

Ralph

Lorenzo

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Re: JUST DIAGNOSED - DILEMA
« Reply #1 on: October 15, 2007, 05:36:20 am »
personally? Radiosurgery and hang on until retirement, i think. But don't hold me on that, I don't know what the details of your AN are.

good luck, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

leapyrtwins

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Re: JUST DIAGNOSED - DILEMA
« Reply #2 on: October 15, 2007, 05:56:51 am »
Ralph -

if it were me, I'd opt for the radiosurgery based on your employment situation.  After my surgery I was in touch with a former police officer from my area, whose name I got from the ANA willing to talk list.  He had the surgery and from what I recall, he was forced into early retirement.  I think he was closer to retirement than you are, but he didn't really want to retire.  This gentleman was more than willing to talk to me about his situation - he also gave me lots of advice and feedback on the BAHA - I'll try to find his email address and send it to you.

Best of 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

jb

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Re: JUST DIAGNOSED - DILEMA
« Reply #3 on: October 15, 2007, 09:17:51 am »
It sounds like you also have the option to 'watch and wait'.  Probably what I would do (if your symptoms aren't too troublesome) and check for growth with another MRI in a few months.  Radiosurgery would be my second choice.  Although radiosurgery can't guarantee hearing preservation, I would think you'd have better odds vs. standard surgery on a 2cm AN.  JMHO.
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

Craig

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Re: JUST DIAGNOSED - DILEMA
« Reply #4 on: October 15, 2007, 10:54:35 am »
I would go for the radiosurgery. I had my treatments in April and have a very active lifestyle. I am an avid cylcist and I run 2 to 3 days a week. My hearing has not changed and the ringing in my ear actually decreased. Now, everyone's symptoms are different but the odds are in your favor for radiosurgery.

Craig
1.78 CM AN / Vanderbilt Medical Center Trilogy System / 4 Radiation Treatments / 24gy total

Boppie

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Re: JUST DIAGNOSED - DILEMA
« Reply #5 on: October 15, 2007, 02:50:28 pm »
Ralph, Something to think about...If you choose a wait and watch option you will be keeping track of the growth of your AN.  The AN can be more ambitious once it gets out beyond the end of the inner auditory canal and into the Pontine angle.  According to a reliable and recent survey, the rate of growth can accelerate at the 2 cm stage.  Hopefully you can keep the same insurance throughout your career to allow the frequent testing. 

linnilue

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Re: JUST DIAGNOSED - DILEMA
« Reply #6 on: October 15, 2007, 03:19:14 pm »
Welcome to this forum.  It is full of people in very much your same position who are willing to share their personal experiences in order to assist you in making an informed decision.  I am one who had radiosurgery but with a not so great outcome within months of the treatment.  However, I want to say that I would still choose radiosurgery but it would be either gammaknife or cyberknife, I had linac (linear accelerated) which does not have the best of outcomes if not in the best of hands.  That means that the doctors doing the radiosurgery must be doing alot and I mean alot and you need to ask that question.  Also, be aware, as the AN assoc. has said and that is that your doctors work as a team doing these surgeries all the team, in other words they have alot of experience and they work together making all decisions about your care.  I want to say that once I got to the right doctors after suffering many side effects which were not understood by my doctors here, I felt much better and it helped me to heal and ultimately feel better.  It took me a couple of years but looking back, again I say, I would've have changed my mind about radiosurgery, I would have found an experienced team of doctors who used cyberknife or gammaknife radiosurgery.  This is only my personal opinion, I am a nurse, so you see, when any of us gets this diagnosis we are very fragile and it is that fragility that steered me in the wrong direction, I din't do the research because I was scared and told by my neurologist not to look on the internet, it woudn't help me.  That was so wrong.  You are doing the right thing by doing the research beforehand.  Anytime you need help here, just ask.  Holly
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

Obita

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Re: JUST DIAGNOSED - DILEMA
« Reply #7 on: October 15, 2007, 06:24:29 pm »
Hi Ralph and welcome!

There were three law enforcement officers on here about a year ago.  You can read their posts or send them a message by clicking on the number of members at the bottom of the home page, find them in the alpha listing and click on their usernames.  They are:  Dantheman, roub1 and Sam

Good luck Ralph.  I am so sorry you ended up with what brought us all together but, I am glad you found us.

Kathy





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

sgerrard

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Re: JUST DIAGNOSED - DILEMA
« Reply #8 on: October 15, 2007, 09:08:31 pm »
The first thing I would do if I were you is get a CD of the MRI, and a copy of your hearing test and any other tests, and send it by mail to the Cyberknife doctors. They will tell you whether your AN is suitable for CK radiation treatment.

If it is, I would pick CK over surgery, even without the retirement/pension question. If CK can get it done, it is the better way to go. The big question is will it work in your case. Find out.

Here's hoping you can keep your day job, as they say. And I swear I never drive over the speed limit. ;)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Derek

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Re: JUST DIAGNOSED - DILEMA
« Reply #9 on: October 16, 2007, 04:26:34 am »
Hi there Ralph...

I retired from a UK police force in 2004 after 37 years service, my last 8 years being in the rank of Detective Superintendent in charge of a murder investigation squad.

My AN (1.9cm) was diagnosed in 2002 and my symptoms were total loss of hearing on the affected right side and minor tinnitus.

I was then 2 years from the mandatory retirement age of 60 years and I made a personal decision not to make anyone aware of my medical condition other than my wife...not even my kids (adults) were made aware. I am now into my 6th year in the 'Watch & Wait' mode and fully intend to remain so for as long as I possibly can as I am not prepared to undertake unnecessary risks associated with all forms of AN treatment intervention particularly microsurgery. However in the event that I eventually do have to undergo treatment then my personal choice would be GK (CK is not yet available within the UK).

My personal advice would be, if feasible,  to continue with your police duties whilst carefully monitoring your AN via regular MRI scans and providing your consultant neuro is agreeable, continue in the 'watch and wait' mode for as long as possible....hopefully until at least your retirement arrives. The potential loss of 15k per year for the rest of your life is incentive enough to continue in your job!

You may find that my thread 'Top Tips For The 'Watch & Wait' Brigade' in the sub forum  'For Those In The Watch and Wait Status' may be of some use to you. Just ensure that you carry out maximum research and that you obtain more than one medical opinion.

The ultimate decision is yours based upon your own research, 'gut' feeling and the advice of a consultant neurosugeon in whom you have complete confidence.

Very best wishes for the future

Derek
« Last Edit: October 16, 2007, 09:47:30 am by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.