Careers

[nolant]

Crewbies,

I am new to the Crew.  I have been quietly following along the last couple weeks.   I was wondering if I could get some thoughts on a topic that I am facing.  This disorder has brought me to a cross road with my career.  I am a manager for one of those big box retail stores (not Walmart, but close).  I have already elected to take a step down in my responsiblity.  It is still a huge struggle.  I feel I face two choices:  keep steppeing down or disability.  Is there anyone out there that has experience with this scenerio?

Tom

PS  I live in Columbus, Ohio.  I would like to attend the weekend gateaway, and meet the Crew.

[heyyouconnie]

I can say disability is hard to get, and isn't enough to support anyone. It is more like a supplement. I finally got my disability after 1 1/2 years of trying. I only get $625 a month from it, and I can only make $800 a month with a part time job.

I would suggest you take a leave of absence from your job. Get your surgery and see how you feel. I know a nurse who did that and has returned to her job full time in less than one year. Maybe you could get some supplement of income from the unemployment board because of your surgery.??

Good Luck!

[russ]

Hi Tom
  I wouldn't seek a disability if you have another good ear.
  Yes, a leave of absence or change in responsibility for a time seems prudent. Even if you do make less money.
  I'm on SSD with NF-2 and receive $870 plus many other assistive perks so do ok though I'd rather work if not just for the social contacts and some sense of personal integrity from work itself. I did manage to gain my Masters after leaving work, however. But, that was a real struggle!!
  Hang in there!
  Russ

[bjordanr]

I SO relate to you. I was once a successful Vice President of Human Resources. I tried to keep working for about 1 year after my surgery but eventually had to reluctantly admit that I could no longer perform at the level I was used to.  After fighting with the doctors about it for 5 months, I went out on disability (company provided policy) thinking it would by only short term, but five years later I am still out.  Although Social Security Disability took a while to get (about 1 year for me), if you hire an SS Attorney it can go easier. The amount you will get will depend on your working income, etc...so for someone to say you cannot live on it is incorrect - as it all depends on your circumstances. Thank goodnes I am married and my husband is working. I get about $1700/mo on SSD plus Medicare (which I only use as a secondary to my husband's insurance).  Now, the private disability that my company had is a different story.  They were all nice when I first filed but once my doctors said my disability was permenant they got nasty.  Long story short - five years, an attorney and lots of stress I am still fighting with them to get my benefits.  They will approve me for a few months then terminate my claim...more lawyers...reinstated for 9 months...terminated again...and so on.

I MISS WORKING SO MUCH!  People think that is a strange thing to say but I loved my job and I felt like I was doing something worthwhile.  My advice to you is try to keep working after surgery at whatever capacity if you can and it does not cause too much pain.  I am not even sure what I would say to a prospective employer now about why I have been unable to work so long and they certainly would not hire me back into my field and level after all this time.

[Kim]

I am an office manager of  a very busy business with 2 locations, 16 employees. I had surgery almost a year ago for a nearly 4cm tumor and was back to work part-time after 2 weeks; full time after 5.  I am also very physically active, just as before surgery.  My tumor and surgery have not affected my ability to work at all, other than the adjustment to the loss of hearing in one ear.

I am curious as to what "disabilities" you folks are referring to that make you unable to work....?

Thanks!

[bjordanr]

The disabilities for me have been severe headaches, cognitive issues (jumbled speech, can't work with numbers, short term memory loss), fatigue, right side deafness and poor balance. My headaches get so bad that I cannot concentrate and they eventually wear me out to a point that I have to take a nap. I used to handle huge manpower budgets - now I cannot even add simple numbers. I have nerve damage on the side of the surgery - it has gotten so bad that the right side of my neck/head/shoulder are crunched up and my right arm and hand go numb...which means I can only work on the computer for about 1 hour a day if I am lucky.

I was back at work part-time 3 weeks post-surgery and full time after 2 months.  (my doctor said patients sometimes have what is called "survivor syndrome" at first). The real problems started about 9 months after surgery. I tried to keep working for about another year after that but eventually I lost the battle to stay working. 

[OneEye]

I too returned to work after my 02/2001 surgery.  My problems are compounded by severe eye problems including no depth perception, so my balance issues have not imporved.  Walking requires my full concentration to keep from stumbling or falling and is very fatiguing.  My ability to concentrate and track multiple issues is drastically reduced and I get headaches after about an hour of work.  I was fired in 11/04 from the company I had been with for 7 years becasue I could no longer preform adequately.  I am still trying to get SSD.  I've worked 2-3 jobs at a time most of my life and now I can't even handle one!

OneEye 

[russ]

Kim
  I was Dx'd NF-2 and have another AN still in the opposite side, gained a menigioma, 10 small spinal tumors.
The surgery produced deafness and disequilibrium and the other AN only serves to worsen that. Now there is a Peripheral Neuropaty issue to live with also.
  You're fortunate but so am I, some die or are wheel chair bound and must live in assisted living or a nursing home.
  Keep on truckin everyone >>>
  Russ

[gregpstone]

The disabilities for me have been severe headaches, cognitive issues (jumbled speech, can't work with numbers, short term memory loss), fatigue, right side deafness and poor balance.

I haven't had surgery, but the balance nerve damage from my 3.2 cm AN has caused similar cognitive problems that are keeping me from being able to do my job. I'm a CPA and Executive VP. Be sure to look at these articles that explain the cognitive problems:

This one  http://64.233.179.104/search?q=cache:VdgsHxqeJaMJ:www.jvr-web.org/Volume_15/Number_1/Feature_15-1.pdf+%22does+vestibular+damage+cause+cognitive%22&hl=en

I posted in a separate thread. It is less than a year old and summarizes new medical research linking balance disorders to atrophy of the hippocampus.


This one   http://www.backgroundfacts.com/menieres/COGDIS.htm
 you may have seen before as Russ posted it a couple of years ago.

If you find a doctor familiar with the latest research it might help in your battles with the insurance company. I'm waiting for an August 25 appointment with the head of the Vestibular lab at Washington U Med School here in St. Louis before I file for disability. I'm fortunate in that coverage is through the American Institute of CPAs and only requires that I be unable to do my current job.

Best of luck to you.

[bjordanr]

Greg
Thanks for the links..and info.  How did you find a vestibular lab? Are they listed as that?  I have been to a balance clinic, physical theraphy and even a neuro-psychiatrist. Heck, I even tried something called "interactive metronome therapy" -- which by the way, was VERY frustrating and tiring. I have never heard of a vestibular lab...I am going to see what I can find in my area - Florida.

While the insurance company does not deny I have cognitive disturbance issues (or for that fact, my disabling headaches) - they are now saying that I have no "proof" that these are in any way related to my AN surgery...(maybe someone should drill a hole in their head, jostle their brain around and see what happens!) ...Okay..so I digress.

Besides having disability attorneys on the case -- I have now hired a medical legal researcher (retired attorney doing consulting now) to put the MOUNDS of data and research out there linking so many of the post-operative complications (of which most are represented somewhere in the forum) to the AN surgery.  I should have that report by the end of next week and will GLADLY share it with anyone in need of it in order to get benefits or SSD - FREE.  We gotta help each other!

Please keep in mind, I am not angry about the outcome or trying to sue my surgeon or anything negative like that!  I am glad to be alive and just love the surgeons that did my surgery.  I just want the disability benefits my employer purchased for me and I am doing all I can to make sure I recieve them.

Boy, would I love to be able to go back to work and make the kind of money I used to make! It took me several years to come to terms with the word "disability". Been down the road of the MANY work at home ideas...most are scams. Still looking for options...as I would rather contribute to the world than be no disability!

Thanks for everyone's posts...