Author Topic: Just found this site and I'm a mess  (Read 7142 times)

crazyjster

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Just found this site and I'm a mess
« on: September 12, 2012, 11:26:31 pm »
I had my AN removed almost 5 years ago but it doesn't seem like it was even a year ago sometimes.  I had the full blown surgery complete with a nice big scar down the left side of my head that still hurts and I still have neck pain.  I am deaf in my left ear and they severed my balance nerve.  I guess my tumor was the size of a "large grape" pushing against my 7th and 8th cranial nerves.  According to my Dr. at my last appt and MRI, everything is looks great.  Yeah right.  I have non-stop tinnitus, I did vestibular therapy for 18 months, had wrist surgery for multiple falls, has issues with vision, noise sensitivity, and now have to have knee and wrist surgery (other wrist) from falling (guess I wasted 18 months), and have seizures (I had them before the tumor).  I am depressed.  I have a toddler and a pre-schooler (yes you can get pregnant 3 months post surgery).  There are days I can't function.  I get migraines.  My husband is pushing for me to get SSDI.  I applied a couple of years ago and was denied.  I can't even go into a mall or anywhere where the noise echos or I  get disoriented and headaches or nauseas.  Does anyone else have any of these issues so long after surgery?  Everything I see about disability says "get a lawyer?."  No one understands my anger and thinks I should be happy I'm alive.  But no one understands what I've lost.   
AN Left Ear-Surgery 10/16/07
Dr. John House-House Ear Clinic
Complete Hearing loss in left ear/balance nerve severed

Jim Scott

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Re: Just found this site and I'm a mess
« Reply #1 on: September 13, 2012, 09:10:28 am »
Crazyjster ~

I'm so sorry to learn of a fellow AN 'survivor' with numerous, life-affecting issues so long past surgery.  Please know that you are not alone and that there are quite a few folks that frequent these forums with similar AN-related problems to deal with and many will be eager to offer you advice, information and, most of all, support as you struggle with these issues. Please visit here as often as you can because we understand what you're going through and want to help in whatever way we can.

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.

Brewers7

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Re: Just found this site and I'm a mess
« Reply #2 on: September 13, 2012, 10:25:12 am »
Welcome to our forum.  I am so sorry that you are still having such difficulties.  I am nearly 4 years post op and this site has been very helpful to me.  Where are you from?
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Chances3

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Re: Just found this site and I'm a mess
« Reply #3 on: September 13, 2012, 11:27:57 am »
Hi There,

I'm sorry to hear you have so many problems post op.  I am 2 years post op, and I do suffer with some issues you talked about, but my balance is pretty good.  My wife is on SSDI, she has an inoperable back, we have been to 4 excellent surgeons in Manhattan and Philadelphia, they all have told her the same thing.  The risks are too high.  She applied for SSDI and was denied, but we were told they always deny on the first try, so we applied again and she was awarded the disability coverage.  I suggest you apply again, if you are denied, then find a good disability lawyer.  If you're symptoms are truly disabling and you are unable to work, you should have a good chance at winning your case.  Stay strong.

crazyjster

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Re: Just found this site and I'm a mess
« Reply #4 on: September 14, 2012, 01:55:12 pm »
I am from the Los Angeles Area...I just found out yesterday I need another surgery on my left wrist (this will be the 2nd time-I had it in 96) from falling to much.  I don't know if the '96 one was tumor related or not since I wasn't diagnosed until 2007.  I had surgery on my right wrist in 2009 from falling to much and then did a year of vestibular therapy and also need surgery on my knee for a torn ACL and MCL from falling but I have been trying to put it off because re-hab for that is also a year.  I go Monday for them to check my knee out again.  So basically this AN has caused me to need 3 surgeries in 4 years due to balance.  According to my brain surgeon I'm as good as I'm gonna get, which according to him is "great!"  I guess I'm great because I'm not dead but needing joint surgery constantly and putting my kids at risk.  I don't know if getting pregnant again ruined a year of vestibular re-hab.  I could never go back to work, I am a hazard to a workplace (including my home evidently LOL) and Student Loan people are bugging the crap out of me.  I can't go back to school because of my issues with noise sensitivity, and I guess I could try re-applying for SSDI but I don't know if lawyer fees are worth getting SSDI? My husband is really pushing it and part of me doesn't want to sign a piece of paper saying that I have a disability.  I just want to be normal old me.  Though I don't even remember who that was anymore.  I just have good days and bad days.  I guess like someone with Major Depressive Disorder (I was a shrink at one point and then a SPED teacher).  Now I am an OS dream patient.
AN Left Ear-Surgery 10/16/07
Dr. John House-House Ear Clinic
Complete Hearing loss in left ear/balance nerve severed

BlueSky

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Re: Just found this site and I'm a mess
« Reply #5 on: September 18, 2012, 06:42:50 pm »
Hello crazyjster,
I'm sorry you going through all of this, it must be really difficult! I'm glad you found us so you have some people to talk to that at least understand the difficulties of dealing with an AN and having to re-define their normal. Have you gone to your local support group? Having some local people to talk to face to face about your issues and methods that have helped them may also be beneficial.

As far as SSDI I would apply. This is what we all payed into while working so we would have a small safety net 'in case of'. Unfortunately sometimes 'in case of' happens and there is very little we can do about it.

If you do decide to to file for disability you might be able to have your student loan forgiven. Here is a link from the department of Ed.

http://studentaid.ed.gov/repay-loans/forgiveness-cancellation

I wish you the best.

Rich D

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Re: Just found this site and I'm a mess
« Reply #6 on: September 18, 2012, 07:03:11 pm »
Hello Crazyjstr,   You are not alone!    Many of us have these same symptoms.   I can tell you that my surgery was in Feb. 1995 and that the neck pain slowly disappears a little each year.  I use Tylenol when it bothers me on very rare occassions now.  It makes my nights more restful.  You can handle anything if you get a good night's sleep.  Tinnitis is an issue with me, but I seem to do OK ost of the time.  I notice it mostly in quiet times like tonight, as I type this.  I find that caffeine exacebates the loudness of my tinnitis.  When I don't drink coffee or have chocolate, it almost disappears.  Diet has an impact for sure.  Say in touch on these forums.  It will help. :)