Author Topic: Nine months out from surgery and depressed  (Read 5078 times)

Dusty

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Nine months out from surgery and depressed
« on: January 21, 2010, 08:50:41 am »
Hello from a 9 month postie who has not been around the forum for a while.  I needed to express my feelings with people who can relate.  I think I am losing my mind trying to deal with the tinnitus that I was hoping would at least subside after the nerve was cut.  But that was just a pipe dream and the tuning fork continues to fill my brain 24x7.  I don't sleep without Ambien CR and have been on antidepressants for 18 months now.  I have started seeing a new doctor who is trying anti siezure medicine in an attempt to 'calm' the tinnitus.  I have seen no change from taking this medication after 1 week.  I have also been referred by my ENT surgeon, Dr. Antonnelli, to a specialist in tinnitus at Shands Hospital but I cant see him until late March.  I also feel like people think I am a hypocondriac that just likes to complain but as you know most of the symptoms are invisible to others.  Although my recovery has gone well other than the SSD and tinnitus I have been reasigned and my salary reduced $15000.  This I am told is due to the amount of time I was out of the office and my difficulty getting immediately back to pre surgery performance.  I never expected to be punished for dealing with this but I guess I had more faith in people.  Has anyone found relief from tinnitus that is founded in actual medical science?  Sorry for the rambling but I have no one else to dump on that will listen and understand.   
Diagnosed 6/2008 Right AN 8mmx11mmx12mm
Tinnitus, vertigo & pressure
MRI 1/2009 - AN 14mmx12mmx13mm
Surgery Schedule 3/16/2009 Drs. Antonelli and Lewis
Surgery Completed 3/16/2009 AN removed and accoustic nerve cut.
SSD

pjb

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Re: Nine months out from surgery and depressed
« Reply #1 on: January 21, 2010, 09:05:34 am »
I am so sorry for what you are going through I feel exactly like you nothing is helping right now and I do not know what to do at least we are not alone.  Some people say xanax helps maybe try that one I am on it and still have problems but I don't know if I stop it just might get worse afraid to experiment just yet.  I am also on Ambien I need to get some sleep at least 6 to 7 hours it works for me.  I am looking into a possible hearing aid and the Dr. said that MIGHT help with the tinnitus so I have to wait and see on that one. You have to see about your job I am not sure but they cannot reduce your salary because of a medical condition please look into that ask a lawyer for a free consultation... Hope we can one day find relief from the noise.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

ppearl214

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Re: Nine months out from surgery and depressed
« Reply #2 on: January 21, 2010, 09:06:03 am »
Hey Dusty! GREAT to "see" you! :)

I am SOOO sorry you are running into these post-surgical issues and I truly do understand about having others in our lives not understand what they cannot "see".

Book recommendation... my sister gave me this book when I was first diagnosed with fibromyalgia (back in the day, dr's told us it was all in our heads... just like pms... and now, great to see the medical  community recognize it).

http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322/ref=sr_1_1?ie=UTF8&s=books&qid=1264085968&sr=1-1

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)

Stacy Taylor, MSW/LCSW



This book has been a gawd-send for me... in helping me to try to cope with a "hidden" ailment... for how others in our lives view the situation and how to best cope with it from an emotional standpoint.

I cannot answer, medically, about trying to rid yourself of the tinnitus, etc..... but we need you emotionally healthy as "mind over body" truly can help with what ails us.

You KNOW I send my healing hugglez... and you know I'm cheering you on. Please keep us updated on what the team says, but as a suggestion only.... you many want to check out this book (and other options) to help with the coping of what is going on.

hang in there Dusty! I'm cheering you on!  
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pjb

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Re: Nine months out from surgery and depressed
« Reply #3 on: January 21, 2010, 09:24:07 am »
Hey Dusty! GREAT to "see" you! :)

I am SOOO sorry you are running into these post-surgical issues and I truly do understand about having others in our lives not understand what they cannot "see".

Book recommendation... my sister gave me this book when I was first diagnosed with fibromyalgia (back in the day, dr's told us it was all in our heads... just like pms... and now, great to see the medical  community recognize it).

http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322/ref=sr_1_1?ie=UTF8&s=books&qid=1264085968&sr=1-1

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)




Stacy Taylor, MSW/LCSW



This book has been a gawd-send for me... in helping me to try to cope with a "hidden" ailment... for how others in our lives view the situation and how to best cope with it from an emotional standpoint.

I cannot answer, medically, about trying to rid yourself of the tinnitus, etc..... but we need you emotionally healthy as "mind over body" truly can help with what ails us.

You KNOW I send my healing hugglez... and you know I'm cheering you on. Please keep us updated on what the team says, but as a suggestion only.... you many want to check out this book (and other options) to help with the coping of what is going on.

hang in there Dusty! I'm cheering you on!  
Phyl

Phyl just read this I have to look into that book thank you so much for all the information and tools you give to us to get through this journey we are all experiencing together be it good and bad...

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Dusty

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Re: Nine months out from surgery and depressed
« Reply #4 on: January 21, 2010, 09:26:06 am »
Thanks for the encouraging words and the book recommendation.  I will definately read it.  I am at at will employee and can be terminated for no reason if management chooses.  The reassignment was not so bad but the loss of income hurt and has required my wife to go to work full time after 15 years out of the job market.  This is a short term setback that only shows that people dont understand how to deal with people who have any type of disability.  I myself have a new respect for the disabled and wish I would have been more respectful in my previous life.
Diagnosed 6/2008 Right AN 8mmx11mmx12mm
Tinnitus, vertigo & pressure
MRI 1/2009 - AN 14mmx12mmx13mm
Surgery Schedule 3/16/2009 Drs. Antonelli and Lewis
Surgery Completed 3/16/2009 AN removed and accoustic nerve cut.
SSD

ppearl214

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Re: Nine months out from surgery and depressed
« Reply #5 on: January 21, 2010, 09:34:34 am »
Dusty, glad to help :)

Like you, the state I live also has "employee at will", so I'm in the same boat.  As I am "disabled" (I am also a town-appointed member of our Commission on Disability Issues -- a 2 yr post that I was appointed), its been rather humbling to me to know that now that I am in these shoes, how I can be a better person towards others that do walk in my shoes.

Not sure if you remember my mantra... "day by day, inch by inch....."... that is what gets me through each day.

Phyl

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

ppearl214

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Re: Nine months out from surgery and depressed
« Reply #6 on: January 21, 2010, 09:35:33 am »
Phyl just read this I have to look into that book thank you so much for all the information and tools you give to us to get through this journey we are all experiencing together be it good and bad...

Pat

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

briansmome

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Re: Nine months out from surgery and depressed
« Reply #7 on: January 21, 2010, 11:21:04 am »
I am so sorry to hear you are having trouble. I have not had the tinnitus problems but I feel your pain on the work issues. I have also heavily felt that those who haven't been there can understand fully what you have called 'invisible' symptoms. I had a few snide comments from coworkers about my return to work before the doctor was even ready to release me for that. When did they (coworkers) obtain their medical degree?? Sorry, just a bit of a rant. I wish I could offer advice; but please now that you at least have our support and understanding.
4.2 cm cerebellopontine angle tumor; resected 6/09. About 20% remains; last MRI showed no subsequent growth :) Stroke during surgery; dealing with after effects of that but better every day!

newmommyLA

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Re: Nine months out from surgery and depressed
« Reply #8 on: January 21, 2010, 11:33:05 am »
Dusty,
I know how disabling the tinnitus is and I've struggled with it everyday since my surgery last October.  I have to be careful not to project too far into my future with worry about how this dreadful noise could greatly reduce my quality of life (and has) and affect my family.  I am obsessed with research online and trying to find the cure that will give me my life back.  There are a few drugs in clinical trials right now that seem hopeful (acomprosate and neramexane) and rTMS (repetitive transcranial magnetic stimulation) look to be hopeful.  I'm about to start a biofeedback/neurofeedback program in an attempt to train my brain to relax and not focus on the noise so much.  I'll keep posting here to let people know if it helps or not.  I've been desperate enough to volunteer to participate in clinical trials, but rejected b/c of my previous AN and the fact that my surgery caused my tinnitus (not noise exposure).  I am truly hopeful that we're going to find new treatments for tinnitus in the near future and that we may all get relief soon.  Until then, we have to try our best to habituate even though it is soooooooooooo hard.  How do you ignore something that is so loud?  Many of us suffer with you and I hope we all learn to live with this until we find relief.

Best Wishes,
Amy
6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.

Jim Scott

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Re: Nine months out from surgery and depressed
« Reply #9 on: January 21, 2010, 02:17:27 pm »
Hi, Dusty ~

I'm sorry to learn of your struggle with the dreaded tinnitus and your reassignment at work that had such a drastic effect on your income.  That stinks.  However, it's not uncommon.  Most employers are pretty hard-nosed about productivity and the employee's medical problems are not often seen as a reason to keep the employee on the job and/or at the same salary if the employee cannot function at the level he/she is expected.  Many of our members are struggling with tinnitus and other AN or post-op problems that affect their ability to function normally at their job.  Most win the battle but it's usually a long, hard slog.  I can only hope that you'll soon find relief for your tinnitus and that the job problems will resolve in your favor.     

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.

moe

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Re: Nine months out from surgery and depressed
« Reply #10 on: January 21, 2010, 07:43:23 pm »
Hi Dusty,
I too suffer from severe tinnitus, so can relate and empathize.
Xanax helps reduce the tone from a scream to shrill type(EMS sound), so it is an improvement.
(.5 mg, extended release, twice daily.)
Unfortunately this has affected by lifestyle, as being in noisy places makes it worse. (good thing I'm not a social butterfly by nature!) I love being outdoors, as much as possible, which helps muffle the sound.
Also wearing a foamy earplug in the non affected ear helps to reduce extraneous noise.
I also will follow all those who suffer from this to see if anything comes around in studies. I get the ATA newsletter, also. Just keep hoping, praying, and plugging along. A cure has to be found one of these years.
Hang in there.. ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Tom Browning

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Re: Nine months out from surgery and depressed
« Reply #11 on: January 29, 2010, 10:53:23 am »
Hello from a 9 month postie who has not been around the forum for a while.  I needed to express my feelings with people who can relate.  I think I am losing my mind trying to deal with the tinnitus that I was hoping would at least subside after the nerve was cut.  But that was just a pipe dream and the tuning fork continues to fill my brain 24x7.  I don't sleep without Ambien CR and have been on antidepressants for 18 months now.  I have started seeing a new doctor who is trying anti siezure medicine in an attempt to 'calm' the tinnitus.  I have seen no change from taking this medication after 1 week.  I have also been referred by my ENT surgeon, Dr. Antonnelli, to a specialist in tinnitus at Shands Hospital but I cant see him until late March.  I also feel like people think I am a hypocondriac that just likes to complain but as you know most of the symptoms are invisible to others.  Although my recovery has gone well other than the SSD and tinnitus I have been reasigned and my salary reduced $15000.  This I am told is due to the amount of time I was out of the office and my difficulty getting immediately back to pre surgery performance.  I never expected to be punished for dealing with this but I guess I had more faith in people.  Has anyone found relief from tinnitus that is founded in actual medical science?  Sorry for the rambling but I have no one else to dump on that will listen and understand.   
Sorry you are having such a rough time.  I also have to take ambien to get to sleep, the tinitus and other sounds in my head are too annoying when the room is quiet.  I'm 8 weeks post op, but don't hold out much hope for this to go away.  The other symptoms are all getting better. I feel like I'm one of the lucky ones just dealing with tinitus, diziness, a stiff neck and blood clots. Hope you get your salary back up.  That one really stinks.
Tom