Chiari and Career/Working

[epsion22]

So, I have found out that I have Chiari after having memory issues and being tested. Some days, I feel ok and work fine, sometime, I am a bit spaced out and feel hardly like myself.

I work in finance this involves numbers, concepts, and thinking (on occasion) and have found its hard to work at times. Anyone one here have stories of how chiari has affected their careers and how one deals or copes with them? Of course, the hard truth is fine as well if this may potentially disable me from the profession. My symptoms are mild at this point with no MRI visuals of a syrinx and such but was just curious.

I feel like I should tough it out, though at times, its very tiring.

Ben

[cash242]

I am a pediatric OT and struggle daily with not enough energy, brain power and stamina. Luckily I work with amazing coworkers that understand my condition and help when I need it.  There are days that I can't think and know that they won't ridicule me if I ask questions again.  I also have word finding issues which is frustrating when meeting parents of my kiddos and trying to sound professional so I have learned to slow down and think before I speak (which has never been easy for me!) I had surgery and assumed that for me all things would be better still have some mental difficulties but nothing like before!! I think this is going to be the way it is and I can either stop doing what I love or make the most of what I have.

[jenshead]

This has been a fear of mine lately because I had a couple weeks of cognitive issues.  I'm a software engineer so I need my math skills intact.  It's weird though - my memory is more of an issue.  I FEEL like I can't think, but if I just do it - solve whatever problem needs solving -  it just works.  Maybe not the same for you?  

Anyway what I wanted to suggest is tell your dr about this and see if they can try any meds (have they already?).  I am able to think a lot more clearly when on my meds (Diamox) so it might be worth a try.  I'm pretty sure my recent brain fog was caused by me messing up my med schedule.

[selmaS]

  Hi, I actually changed my position with my employer yrs b4 I got my dx, but I saw changes in myself and knew I could not keep up...I took a position that was more of a "sit down" job...but it was also in retail so there  really is no such thing....the hours were too long and  the onset of new techniques every fall at our busy time proved too much for me to handle....I was a HR manager...and doing schedules, payroll, hiring, firing, training etc....and they kept updating the systems.....plus as a manager there was no limit to the time per week u were expected to work.....or tasks u were expected to do....

Post op my sick time ran out and I was terminated and no longer have a job...not sure what job would be a good fit as even post op I have my good and bad days....depending on what I do...so, I am not sure what I can do realistically and not cause a disruption to the new employer...being in HR, I know I would not hire me....lol...

I must say tho, I am getting stronger with time...so, in a few months I may be in a better place to know my new career.

    "selma"

[lydelia]

umm .... my symptoms are mostly mild too, but they are getting a little worse, mainly because I cannot get away from doing the things that make this worse, like lifting heavy stuff, and doing things that strain the neck (I work in a factory). As for how you cope with symptoms affecting your work, I guess the only answer to that is that you just keep on keeping on, until you get home, and then you crash, lol. That is all I can come up with. If fatigue is an issue for me, I make sure I have some caffeine around. When pain is an issue, I make sure I have some pain killers around, and I rest at home as much as I can. I think that the most important part of that whole speil, is to make sure that when you have some down time, make the most of it and take care of your body.

[Autumn55]

I think about my job all the time not knowing what will happen.  I moved into an easier position before I had my dx... I knew something was up.  I was an electrician and I loved my job, but kept making costly stupid mistakes, getting shocked and not able to problem solve.  I felt like a total disaster and tried to hide it from everyone.  Not having a dx, you can't really say anything to your employer other than *I'm losing my mind maybe* haha

My employer doesn't know about my dx yet and I don't think they would understand if they did.  So its a waiting game for me because I know that as soon as they know what it involves I will lose my job for many reasons.  I've been in the position of a clerk for the past 2 years and it is much easier than being an electrician but I really don't have the brain power anymore!  Its really embarrassing!  I have to write everything down, but then get busy and forget about my notes.  Go home at the end of the day thinking I did everything!  But then days/weeks later discover something important that I didn't do!  Its such a mess sometimes.

I don't want to lose my job because of this.  I would like to leave my job on my own terms, but there's nothing I can do about it.  I know it will be better for everyone if I leave.  

But if you aren't able to get a medical pension of some sort or work another position, I would fight to stay at the job as long as possible.  

[epsion22]

Thanks for your stories and feedback. Its terrible how a little herniation can cause life altering issues.

I am no lawyer or anything, but have any of you with impacted jobs tried to collect long term disability? I believe it states that if an illness incapacitates you from the career you are involved in, then it should cover you?

[itsy1]

I'm having a bad brain day; so forgive me if I don't sound coherent.

Ben, I haven't posted in this thread but I'd like to jump in.

I broke down and applied for disability in '08 after recovery from my 2nd decompression made it pretty clear that I'd no longer be able to consistently do a job.  

You can get disability.  I got mine after hiring a disability lawyer who handled my appeal (ss turned me down the first time due to age, education, and the fact I was only 6mos post op).  She helped me find a judge so I could state my case.  Basicly, I gave all my medical info then looked at the judge and said "if you can find me a employer to let me work when I might be able to and still pay me my full time weekly salary, please give me their name".  I think that drove home my whole employment issue.

I hope I make sense.

[Armywife7901]

I have just been diagnosed after having pressure in the back of my head and neck pain. But I am in nursing school and doing TONS of studying, so I am always looking down. Some days the pain is so bad I wonder why I am even bothering continuing with school, but I can't and won't let this disease get the best of me. I have asked my dad, who owns a tool and die shop, to build me a contraption to lift my books and computer to eye level, to help alleviate the neck pain. I also have learned to get up and move around every 20 minutes so I am not sitting in the same position to long. Like jenshead I have moments where I feel like I can't retain or remember anything I have just studied, but somehow if I quit thinking about it to hard I find the information I am looking for. It's hard to explain.

[itsy1]

I can relate t the head/ back/ neck pain and pressure.  Have you considered applying for something like having your textbooks on tape?  I used to read for blind and dyslexic students at my college, I even did research for one who was in graduate school.  I believe that service might be available to you as a accomidation through your school.  You might also be able to get other accomidations such as untimed tests (if that would help).

[Comp1231]

Hello! I have noticed a huge change in my ability to work. Any stress exacerbates my symptoms. I taught Physics and Biology in high school for several years and then moved up to the University Level. The noise of the students started bothering me, and the memory problems made it almost impossible to teach my subjects and remember what I had told students...(detentions, make-up homework, etc.) I helped my husband with his business for 10 years from home and after getting divorced tried to return to work. I asked for accommodations at the first job I tried but got treated soooo much different after I did. The district I was working in treated me horrible. I got evaluated twice as often as other teachers, always got evaluated on the first hour after being out sick, was forced to attend pep rallies with strobe lights and loud music, kids, etc. Needless to say the EEOC filed a complaint and I quit after 5 mo. I have had two surgeries and I thought I was better after my second, but symptoms are coming back with a vengeance. I have been told that my personality changed after my surgeries. That may be part of my problem. Good news though!! Social Security has several programs to help you work, get back to work, or start your own business. You should check them out. Ticket to Work, PASS plan, Schedule A, and many more. Hope this helps! Shana

[selmaS]

  Hi and welcome to the Chiari forum.

I am sorry you had 2 surgeries and still are dealing with so much....work with this condition can be difficult...since we do need to take it easier with some activities others do not see as a means of a trigger for symptoms.

Since this is an older thread the member you sent your comments to here may not see it....you can send them a PM (private message) or comment on a newer thread where the current members participate......or create a new one altogether....

May I ask, did they test you for ALL related conditions?