Author Topic: Disabled  (Read 4245 times)

Rc Moser

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Disabled
« on: February 05, 2006, 10:05:56 am »
If I might as how many of us are disabled or feel you will eventually become disabled after this surgery? I g uess alot depends on how big and how the operation when too. I am about 2 and 1/2 years out and feel the operation was a success, but with the ringing in ear, balance, thinking and comprehending problems, Migraine's, sleep disorder's, and generally feeling like crap all the time I don't think things will get much better, no, I don't consider myself depressed nor do my doctors. 

I work in an industrial noisey enviorment which IMO starts my ear ringing to get worse and feel that's what start's most of my migraines. When I wake up with a headache I usually have to come home cause they most all the time turn into bed restricting Magraine's.  Even on a normal day, I guess you could call it normal, by the time I get off work I feel wornout and my head hurts and usually have to lay down. Aybody else fight these problems on a daily basis?
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

heyyouconnie

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Re: Disabled
« Reply #1 on: February 10, 2006, 04:22:14 pm »
Yea, I have ringing in my ear all the time. I need to wear ear plugs when I vacuum or use the hairdryer. I get headaches when the ringing gets really loud. I will one year post op on March 1 and feel it was a success. But there are issues, balance, ringing, droopy face, dry eye. I am disabled, and collect disability. But I have two knees that are "shot" at well. But when I applied for the disability after the an surgery, I got the disability right away. I am glad I only have a part time job because of getting tired so soon, headaches and difficulty walking.
Good luck with ya

Kathleen_Mc

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Re: Disabled
« Reply #2 on: February 10, 2006, 04:56:19 pm »
I returned to work as an R.N. on a busy Psych. ward 3 1/2 months post-op and have continued to work full time ever since, time off with each "repairative surgery" and then right back. I was offered disablilty but refused, I wouldn't do that (stubborn) at that time as I was so young I saw it as "giving up". I can see that if I was older at the time I would have taken the option. I find the worse of my problem is fatigue. I am sure all the other things increase this (dizziness and the body "fighting to compensate", headaches and the "mental drain" to cope with them etc.) I have not found that things have gotten worse or better since about 2 years post-op and now that I have fully recovered from the surgery in the fall to remove the regrowth I think I am back to where I was before that. Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Rc Moser

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Re: Disabled
« Reply #3 on: February 10, 2006, 08:10:13 pm »
thanks for the replies, I was being to think I was the only one that has these problems.
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

Janet

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Re: Disabled
« Reply #4 on: February 11, 2006, 12:49:03 am »
I can relate. I deal with daily headaches, constant ringing in my ears and the extra energy it takes to walk straight. It has been almost 2 years since my surgery. The ringing and balance I can deal with. It is the headaches that limit what I can do.  I don't collect disability because we can live OK on my husband's income and I have a small business that I can limit my hours. I used to work full time as a RN,  but I honestly don't think I could do it now. If I was the main source of income I would have to reconsider disability. I have good days and bad days that are determined by headaches. Like you, it is not depression. All considering, I think I cope fairly well.

Thanks for your initial question. If it wasn't for this forum, it would be so much harder. It is difficult for me to admit that I can't do as much as I used to. Knowing that others are experiencing similar changes is somehow strengthening and reassuring. Take care and know that you are not alone.
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

thecakes

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Re: Disabled
« Reply #5 on: February 19, 2006, 09:20:04 am »
     Sometimes I feel ok and other times when I'm really tired, I feel disabled.  I also get the stroke feelings and the tumor operation feelings mixed up.  I don't know if the balance probrems are all from the tumor or stroke.  What is the website for stroke victoms?

Battyp

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Re: Disabled
« Reply #6 on: February 21, 2006, 02:30:44 pm »
I'm 6 mos post op and am fence sitting on what I should be doing.  I can't handle my job as a teacher and area supervisor.  I have speech problems which get worse the more I talk.  I'm losing the hearing in my good ear and lost the hearing in my left ear from the tinitus and nerve damage.  I just met with vocational rehab today but they pretty much patted me on the head.  What is someone suppose to do if you're the sole bread winner?  Social Security Disability isn't enough to live off of.  I'm so frustrated!  Any suggestions?  I'm the sole parent to a teenage kid (his dad died from a brain tumor 10 years ago). 

thecakes

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Re: Disabled
« Reply #7 on: March 01, 2006, 08:37:25 am »
   Battyprinces, I was just reading you reply.  Let me get this strait.  Your sons father died from a brain tumor and now you have one too?[even though its not cancer}  Thats terrible.  He has to be going through alot.  Poor guy.

Static

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Re: Disabled
« Reply #8 on: March 01, 2006, 12:19:01 pm »
Ok, so it takes me awhile to get on this board at times, I do read when I can and realllllly appreciate this out.  I Just wanted to vent a bit and to say that I am going and have been going through what I read at the beginning of this thread.  I am, right now, at the point that I just don't know where to turn.  My supervisor at work thinks I just don't know what I'm doing but I just can't concentrate.....my head/brain isn't the same since the surgery (it's just over 2 years now), I know I should be able to do this job without the problems I am having but it's just not happening.  I don't want to use the "well I had brain surgery 2 years ago and I'm deaf in one ear" thing, even though I told them when I started working here, I don't want to seem like I'm trying to make someone "feel sorry" for me, I just can't keep up and can't say it enough times, I just don't know what to do.   I started to fall asleep when driving home on a long trip, I was alone, and weaved a bit on the road where you hit the ridges which has never happened to me before.  So I feel like I need to see some sort of doctor or do something but I just don't know what I need to do.  I don't/can't continue to go on like this.  I'm trying not to let it get the best of me but I feel lost.  Any ideas?????
« Last Edit: March 01, 2006, 01:07:42 pm by Static »
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

thecakes

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Re: Disabled
« Reply #9 on: March 01, 2006, 05:02:26 pm »
  Can you go on disability?  Where I worked for 26 years {25-husband also} Our company decided to close up and go to Mexico.  Then I got this brain thing on top of that.  I had a stroke, a few seizures and I went in a comma for 6 weeks.  So after all that fun I applied for SSD.  Now I am doing so much better  I'm affraid they will take the SSD away from me. 

Static

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Re: Disabled
« Reply #10 on: March 02, 2006, 07:51:17 am »
I never gave disability a thought since I wasn't working at the time the AN was discovered, then started a job for about 10 months that just didn't work out and was looking for something else at the time they moved to NJ (I live in PA), so I went from there to where I am now and have only been here since September of 2005.  Prior to all of that, I did work right out of high school (1978) until I had my first child in 1988.  Don't know if I would be able to collect because I am capable of doing some things, just limited, although I feel like I am going down hill instead of up and thought it would be the other way around  :-\
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Battyp

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Re: Disabled
« Reply #11 on: March 02, 2006, 08:25:37 am »
The cakes:  My son is struggling but surviving.  he's a tough kid.  After my sugery his grandma died from lung cancer that went to her brain.   Hopefully he's done for a while with the bad stuff! 

Just thought i'd mention....the federal goverment has a program called vocational rehabilitation.  I applied last week and am still waiting to see if they will/can help me.  I also read somewhere that if you apply with them and are turned down it makes a social security claim easier to deal with?  They provide retraining to people with disabilities from illness or injury.  They will send you to school if need be, provide medical help, a job coach and help a company understand your illness.  It will be interesting for me to see what/if anything they offer.  I'm a school teach with a speech problem due to the facial numbness and deaf in one ear, tinitus in both ears...and I look drunk all the time  lol

I met with social security tomorrow but am not real hopeful and am not sure how long my  job will let me stay on partial disability.  Most of my job I can do from home in my jammies if i want. 

My motto:  why not apply whats the worse they can say?  no?  oh well then I start over somewhere else.


Static

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Re: Disabled
« Reply #12 on: March 02, 2006, 01:05:57 pm »
Maybe I can think about getting information from vo-rehab and see how to deal with my employer.  My job is very tedious and things need to be in order (at least that's how they like it and I can't say as I blame them).  I don't feel like I am disabled, I can still do alot of things, but my job requires alot of cognitive skills which I feel that as the years go along since the surgery they are getting worse instead of better. As far as balance goes, you should see me pull into a parking space without anything on the sides to guide me! LOL  I just need to get past this thing with my employer.  I don't want to make them think I want pity or anything, I want to be able to do these things, I am just struggling right now and sometimes it's worse than others.  People know of the surgery, and I get an "oh, it's been 2 years ago, you should be doing alot better by now", and I wonder why I am not  :-\  I also don't know how to explain to someone that I am not doing better but will probably always be like this or, god forbid, worse, without feeling like I am looking for pity, which I am not.  Dunno, guess I just feel kinda like I'm in a gutter right now.  Maybe it's been too long of a winter, but I need to see a neurologist as opposed to my surgeon because surgery went fine as far as he's concerned (and it did), things are just changing and I am struggling with it like everyone else out there who has gone through these sorts of things with AN and other things.  I am so glad this board is here so I can just type this stuff out.  Sometimes just that seems to help me! 
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Battyp

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Re: Disabled
« Reply #13 on: March 02, 2006, 04:02:19 pm »
Hey static hang in there!  I'm having employer issuse too and am hoping to get help with voc rehab.  According to my ent there is only so much they can do especially if you have the doctor label you as disabled.  Gives you more rights.  I think I'm borderline on that but will take all the help I can get right now.  I was also told by my friends husband who's an emergency room doc that it can take up to 3 years to recover from something like this involving the brain.  It's been 6 mos for me and I know family and friends just dont understand how much things have changed for me.  It's all just so darn frustrating!