Author Topic: Glad I'm not alone  (Read 15929 times)

roub1

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Glad I'm not alone
« on: December 29, 2006, 07:13:59 pm »
 Had my surgery in April of this year at Ohio State. Thought I was gonna just spend a few days and walk out all better. Wow was I wrong. Guess I should have asked a few more questions. Physically I'm doing ok. I read some of the posts and see that others are, or have experienced the same issues. Just going though a little tough time right now. Seems that nobody believes some of the physical issues that have to be overcome. I read the fishbowl head topic and thought that was me not to long ago, think I still have the wonky head (Does that go away?). Guess I'm not as messed up as I thought I was.  
  I lost hearing in my left ear as a result of the surgery. I have a bi-cross system that works fairly well. I've been using it since July. I have a terrible problem with noisy places. This is not a good thing because I am a Police Officer. I have the biggest problem I think with people that are closest to me. They just don't understand, how I look ok and still have physical problems like the balloon head thing when the wind blows, or how you get dizzy in the dark, or when you are really tired, or why somethings taste different to me and I don't like them anymore. I could go on and on but you all know that  stufff already.  At any rate I sure am glad that I came here and found you guys, and gals.

ppearl214

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Re: Glad I'm not alone
« Reply #1 on: December 29, 2006, 08:37:36 pm »
Hi Officer Roub... and welcome.

Oh, you are defiantely NOT alone in what you have experienced, what you endure now... regardless if by surgery or radiation, many of us that are now post-treatment (what we lovingly refer to as being a "postie") can attest to the wonky head, the balance issues, the noisy environments, etc.  I beleive in strength in numbers... and so many here have given me such strength... and we are here do to the same for you.  We give our good ears (and yes, even our deaf ears), our shoulders have been soaked to the bones, but we remain committed to supporting each other here.  Just when others in our lives don't really understand... we do. 

Let me be the first to say welcome... good to see you here... truly.

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

Boppie

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Re: Glad I'm not alone
« Reply #2 on: December 29, 2006, 08:50:34 pm »
Hi Officer R,  You are about 8 months post op and probably right on time with your recovery.  Things do start tasting better after the longest wait, it seems.  Hearing in a space where lots of background sound accompanies the voice is most difficult to most of us.  As for seeing in the dark that just doesn't seem to get better for me.  I use a flashlight outdoors, if I have to be out there.  It seems like walking on a dark surface and in the dark are so weird.  It just proves how much our sense of balance depends on vision.  The more you tax your brain and balance nerve the better you will become. 

We could write a book on the problems of the vestibular system, right?  As police go you need two badges, one for your honorable profession and one for doing a heroic job to go to work!  Congrats! 

Families and friends have a hard enough time accepting our problems.  Our colleagues understand less.

Sam

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Re: Glad I'm not alone
« Reply #3 on: December 29, 2006, 09:23:58 pm »
Officer R,
I just want you know, that You ARE NOT ALONE, I too am a Police Officer, and have gave the last 13 years of my life to service, it was extremely difficult for me at first, but I have found that the brothers and sisters here on this site, along with the Brotherhood have been very helpful, and supportive. You and I have been trained to cope with everyone else's problems and never our own, but for the first time in many years, I realize not everyone is out there to hurt us (Law Enforcement), most people don't understand our jobs, and how we think, feel about the decisions we make (having to make a life saving decision in milliseconds) on a daily basis. I was told that Police Officers have more thoughts go through their mind in one day, than the average person has in 6 months. We deal with all of the Worst that society has to offer, and manage to keep our sanity and go home to a family smiling as if we had come home from the circus. Then we have a Doctor tell us " you have a Brain tumor", as if our job were not enough. I have found people just like us on this site, and they have been very helpful, just like family who understands. You found the right place.
Are you still active duty?
If I can help I am here!

Sam
Diagnosed 4mm X 7mm Acoustic Neuroma Left side 09/23/2006
Gammaknife Healthsouth/Highland Medical Center 12/12/2006
                         UAB Gammaknife

Jim Scott

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Re: Glad I'm not alone
« Reply #4 on: December 30, 2006, 01:27:50 pm »
roub1 -

Wecome to the board.  Sorry you had to suffer with an AN but at least you realize that we are all in the same 'boat' here and understand your problems coping with this unique medical problem.  You really are not alone.  Not here, anyway.

You certainly have my respect for doing a job that is so badly needed, yet often not respected enough.  I have known a few police officers, personally, and they were all honorable folks who would go the extra mile for anyone in need, yet often had to worry about being charged with some regulation infraction if they didn't do everything 'by the book' in instances where a suspect complained of 'police brutality' or some other such ploy in order to deflect attention from his crime.  This is a real problem in some areas of the country but I trust not where you work and live.

I'm also almost 7 months post-op (retrosigmoid) and while I have a few lingering symptoms (occasional taste issues, like you, sporadic 'scratchy eye' at night) they are diminishing by the month and I can handle them as they are not noticeable to others.  I'm permanently deaf in my left ear but, as a retiree, I don't have specific responsibilities to fulfill, making things much easier, I admit.  I admire you for what you do (police work) and for handling the usual AN post-op issues as well as you obviously have.  Hey, we all have our 'bad days'.

Officer, you are welcome to vent, ask questions or whatever you wish to contribute here.  I wish you well.


Time Heals[/color]


Jim[/color]



« Last Edit: December 30, 2006, 04:52:25 pm by Jim Scott »
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.

roub1

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Re: Glad I'm not alone
« Reply #5 on: December 30, 2006, 06:24:05 pm »
Thanks for all the responses. I'm especially glad to hear from you Sam. I've been a cop for a while longer than you and plan to stay a  while longer if I can. Are you still working? Get back with me maybe we can  swap some war stories.

Obita

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Re: Glad I'm not alone
« Reply #6 on: December 30, 2006, 07:44:54 pm »
Hello roub1 and welcome:

Yes, this is the place to come if you need for someone to understand how you feel, hear and taste!! 

The wonky head and the taste gets better with time.  The only problem I have with my head now that I am 2 and a half years post-op is when I get a cold.  All that extra fluid in there makes me feel like I did before I got it out.  And that feeling, I do not like.

There is a firefighter on here too.  Her username is amylynn.  She had surgery a few months ago and is back to work and doing well.

There was a thread on here a while back re:  they just don't get it (I tried to find it, but no luck).  The jist of it was we want them to get it but they can't get it because they don't have an AN or have not had AN surgery.  Simple as that.  We can't explain the wonky head or what it is like to only hear out of one ear.   One of the women on here made her sister walk on a very wobbly dock.  She told her sister that that was what she felt like all the time.  Her sister was shocked  :o !!! Whaaaaaaaat??  You are kidding me?????? 

Nice to have you on the forum Officer,  Kathy   

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

Gennysmom

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Re: Glad I'm not alone
« Reply #7 on: December 31, 2006, 01:29:55 pm »
Roub....welcome here...I know that my doctor did surgery on an officer that was able to go back to active duty...not sure where he is now, but I heard he was doing OK.  While I am not an officer, my boyfriend of 14 years is and I work in the prosecutor's office, so I know as well how life must be for you...Some of the hardest battle is within ourselves in that we know we still have issues, but we look fine to everyone else, and you want to put up a stiff upper lip and tell everyone that you're fine (in a cop's world, it's not good to show that something might be "wrong").  Plus, you're in situations where you know you aren't as "safe" as you were before, and that's pretty rattling....just know that your body will adjust, you will be tired for awile as your senses are on high alert a lot, and you will find a way to be comfortable and confident in your job.  Hat's off to you for how far you've gotten....I'm a couple months behind you and sounds like we have some of the same issues. 
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

roub1

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Re: Glad I'm not alone
« Reply #8 on: December 31, 2006, 03:04:45 pm »
 Love the comment about walking on the wobbly dock, maybe I should try that. Guess that is the biggest problem I have right now, trying to get my wife and family to understand how things are. It is way to difficult to explain some of these things. I get very frustrated and stop trying to explain, which brings us right back to where we started. Anger sets in and I shut down. Makes for a lousy evening.

Gennysmom

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Re: Glad I'm not alone
« Reply #9 on: December 31, 2006, 04:31:05 pm »
My way to explain and people really seem to get it is to have them think about a time when they had 3-4 drinks and started feeling the slurred speech and hard time walking (like the floor is moving out from under you), and you think that everyone is looking at you trying to walk and talk and noticing that you're having a problem, when they really aren't noticing anything.  So having that feeling 24/7 and trying to function in your life with it.  Most people get that. 
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

ppearl214

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Re: Glad I'm not alone
« Reply #10 on: December 31, 2006, 05:32:50 pm »
great description gennysmom *blows kiss!*.... I usually try to describe wonky head as taking cold meds (that "disconnect" head from body feeling) while balance thrown off at the same time.... heck, I even got my dr's using the term now after I told them about the term... it was the only way they could really understand what was/is going on.

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

Dantheman

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Re: Glad I'm not alone
« Reply #11 on: January 01, 2007, 10:58:10 am »
I'm happy to find others in law enforcement that have already experienced what I'm about to go through. I was diagnosed with AN several weeks ago and I am still going through tests and stuff.
I'm meeting with the Neurologist for the first time on Wednesday.

I emailed Officer R and Sam with some specific questions about returning to work.

This is a great forum and I've learned a great deal from it already.

Dan
Diagnosed 12/08/2006. 1.7 cm Right Side AN.
Trans-lab performed on 02/13/2007 by Dr. Lawrence Meiteles and Dr. Raj Murali at Westchester Medical Center, Valhalla, N.Y.
TransEar worn since 4/17/07.

Obita

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Re: Glad I'm not alone
« Reply #12 on: January 01, 2007, 12:35:16 pm »
Hi Dan and welcome!!

Oh, oh.  Are we starting to see a pattern here?  3 in law enforcement? 

Sorry you need to be here but so glad you came on. 

Do you know the size of your AN yet?  And are you in the USA?

Best of luck in your research, dr. appts. etc....if you end up deciding on surgery, I can try to answer any questions you might have.

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

Dantheman

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Re: Glad I'm not alone
« Reply #13 on: January 01, 2007, 01:31:10 pm »
Kathy,

The Otologist said it appears to be 1.8-2 cm. I don't think he measured it.
I live in Orange County, NY-USA.

I'm more than likely going to have surgery. I've lost 72% voice recognition in my right ear. It happend around Halloween which led to the diagnosis. I think because of the loss of hearing that the Otologist was steering me towards trans lab. I'll have to see what the Neurosurgeon says.

Dan
Diagnosed 12/08/2006. 1.7 cm Right Side AN.
Trans-lab performed on 02/13/2007 by Dr. Lawrence Meiteles and Dr. Raj Murali at Westchester Medical Center, Valhalla, N.Y.
TransEar worn since 4/17/07.

JohnC23

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Re: Glad I'm not alone
« Reply #14 on: January 02, 2007, 08:30:00 pm »
I think we are loading up on you guys. I am a deputy sheriff in KY and had my surgery in April.  I just got back to working the road right at the thanksgiving holiday.  I just now joined this web site.......I wish I would have joined it much earlier!  Anyway,  I lost about 80% of my hearing in my left ear, being right handed, I carry my police radio on my left side (opposite my gun side).  This has caused the most problems since I have had difficulty hearing the police radio over traffic noise.  (I am assigned the Interstate patrol).  I look forward to particiapting in this message board and hope I can help someone!  John
« Last Edit: January 02, 2007, 08:33:03 pm by JohnC23 »
Suboccipital transmeatal, left side, April 7-2006 @ University of Cincinnati Hospital, Cincinnati, Ohio.  (Dr. Philip Theodosopoulos, Mayfield Group and Dr. Myles Pensak, U.C. Head and Neck Surgery)  4 year post-op MRI done Oct. 2010 and was all cear!