Chiari Online Support Group

What does everyone do about work?

hi folks,

im in an awkward limbo position. neruosurgeon says i have a small chiari, but has not yet confirmed its causing my symptoms, so no treatment plan yet.im awaiting an ultrsound scan on my heart to confirm if i have marfans syndrome, and to what extent.

whilst im waiting, my symptoms have settled a little again.my speech is back to normal (no more sluring), and my balance is generally better.however i still get brain fog, especially when alots going on, and this near constant headache, that often pushes to make my toes curl unless i stop what im doing. the only other annoyance is the random pains in my right hand, either foot, the odd muscle spasm bout, and this regular sensation of a cup of tea being spilled down the back of my right leg.

im currently off work sick. i was off work with the same symptoms (although initially diagnosed as a bloodclot on my brain, then they decided it wasnt that after 6 months treatment) from october 2011-may 2012. my latest bout started at the end of october 2012, and ive been off work since (bar two days to see if i could cope before christmas).

i teach/lecture at a college, im the course leader of electrical installation so train apprentices from scratch to fully qualified. i teach all aspects of it, and also oversee the running of the courses for a total of about 70 students aged 16-56.

im able to function better around the house now, doing jobs when i feel good, and stopping when i feel bad. i feel guilty about not being at work and worried i might lose my job, but i found before christmas that i couldnt cope, when my head was really bad, i couldnt stop, i had to teach.

how does everyone else manage? if you push through it everyday do you still survive? how do your family/friends understand that you can put a brave face on and seem "normal" for spells of time,but not feel well enough to commit to work?

i dont know what to do. still waiting for a full diagnoses and decision of treatment. alls i know is this condition whatever it is has made me change career massively twice, and take 28 months off work in the last

last 7 years.

just feeling really down and starting to worry about it all.

thanks,

martin

i have been out of work for about four months and i know i will notbe able to go back untill i get the sugery cause i can barley stand and walk as it is now and i know the feeling cause i work with the pain and symptoms for three months till i could no longer do it safely.

We are currently in the process of finalizing an Employment Program for Ben's Friends Members.

I Promise I can tell you more in two weeks. It will assist all Members even if you are on SSD or SSSI or not on any SSA Programs. Just give me two weeks. We have been working on this Program for Months so it would be as close to perfect as possible for all US Members. We are so protective of Everyone we have put so much of ourselves into this. I promise it's amazing.

Please....

Tracy Z.

Is this a program currently!? I am a 1st grade teacher and have had to stop working because of all the symptoms knocking me down. I can’t function enough to do my job. I am super depressed being a single mother of 2 little girls and now not able to work :frowning: Any information you can give me would be so amazing!

I have been out of work since 2013. I have been trying to get disability since then and haven’t been able to yet .but also have back issues and out her medical issues to. Good luck to you on your journey

I’ve been out on short term disability since Sept. I filed for disability a week ago because my vision is worse than ever. I can only read for short periods of time before I begin seeing double & my eyes begin hurting & getting heavy (like now). Was hoping to return to work but I’ve accepted the fact that I can’t.

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Good luck

I too, am new to this Chiari 1 diagnosis. I had extensive sinus surgery in April 2019 and haven’t been myself since. Post surgery is when the Chiari was discovered from MRI’s done to try to pin point what was going on with the symptoms I was having (brain fog, dizziness, headaches, head spinning when turning too fast, disorientation in crowds of people, feeling like brain was getting over stimulated when trying to focus on one particular task, fatigued quickly, feelings of falling when looking up or down when walking/standing, loss of arm strength). Seems like I could go on, but you get the picture. ENT thought it was just post op symptoms as surgery was quite extensive. After a few weeks he sent me to PT for vertigo, thinking my ear crystals were out of alignment. PT did testing and referred me immediately to a neurosurgeon for more testing. Needless to say, I have seen some wonderful doctors and then there are those others that dismiss you, but no one can say for certain if my symptoms are a result of the sinus surgery or the Chiari.
I’ve had my hearing and vision tested, I’ve been tested for CSF leaks, blood flow blockages and now my neurologist wants me to return to PT and/or Chiropractor for relief. I on the other hand, feel as though I should do everything I can to protect my neck/back and spine, so not real enthused to go this route. She seems to be at a loss at what to do for me, which is frustrating.
On a good note, I feel extremely blessed that my symptoms haven’t gotten any worse and I’m learning to cope, however I haven’t been able to return to work. I have exhausted my FMLA and my short term disability. My PC doctor has restricted me from driving because of the off/on dizziness, which limits me from returning to work as well. Not sure what my options are at this time or the likelihood that this is my new normal.
Just wondering if these symptoms are what others are experiencing? Some of the specialist say that my symptoms don’t present themselves like others with the same diagnosis.
Feeling hopeful to find answers and relief :slightly_smiling_face:

Your situation sounds like mine except I still have short term disability for about 1 more month. In March, I’ll have to request an extension of my leave at work & I don’t know if they’ll approve it. At this time it doesn’t look like I’ll be able to return to work there or anywhere because my symptoms are too bad. I’ve reviewed accommodations on the ADA site but I don’t see any for double vision. I also don’t think my job, or any other, will allow me to lie down & close my eyes when I need to. I’m not closer to any help from doctors than I was in the beginning of the worst of it.