Hi, everyone. My name is Marcia and I've just joined this site in the last week or so. I'm 28 years old, and I was diagnosed w/ Chiari when I was 16, although it wasn't until I was in my early 20s that I found doctors who said it was more than an incidental finding. I was decompressed in 2008, as well as fused from C1 to C4 for cs instability. While I wouldn't say that I've been in great health for the last 5 years, I was definitely doing better. Most of my lingering symptoms seemed mostly to stem from continued low blood pressure and POTS, but it's managed well most of the time with medications. Within the last couple months, however, I've started to see a decline in my health. My neck pain and headaches are much worse than they've been in years, I've got ringing in my ears, shooting pain in my fingers, as well as increased incidences of dizziness/fainting from the low blood pressure, plus just that general sense of not feeling good that's hard to explain to anyone who doesn't have Chiari.
I have a full time job that can be high stress at times. It also involves a lot of computer time and quite a bit of long distance driving. I love my job, to the point that when I realized I don't have enough energy for a social life and a work life both, and have chosen work over spending time with friends & family or dating. My boss really likes me and has been super supportive and flexible, but I'm worried I'm going to have to quit if I don't feel better soon.
So that's some of my story in a nutshell. I'm excited to find a place with people who can understand what I'm going through and can't wait to get to know all of you.
Thank you so much for sharing yourself with us. So sorry to read that you are having increasing symptoms now.
Is it at all possible to , say, go from 40 hours a week at work, to say, 30 hours?? This way , it may help you be able to keep you job and feel at least a bit better.
I am putting my 2 cents in here..I was decompressed in 2008 also, with neck fusion..C4-7...Computer work for me, for long periods of time is not possible...cause issues with neck pain and vision...as for the driving...I can drive ...but long distance driving is no good for me..again, neck pain increases, vision and leg pain also increases with long drives...I have an extremely comfortable car..it is just me.
SO...I am thinking if you can adjust your work schedule a bit...may help...could you talk to your boss about it? Hope I wasn't being intrusive by putting my 2 cents in..would never mean to offend you.
Thanks again for your post..look forward to getting to know ya!
Summer, maybe it’s time for another flex/extension MRI? Theoretically your 4-7 cervical verts should be stable but is it possible that the upper verts or cranio- cervical joints have become unstable? Just my initial thought. I’m sad to hear that your felling so bad, and that’s a very scary feeling to wonder if your job is going to suffer. I hope you get to the bottom of it very soon.
Hi Marcia, glad to have you here with us!! I am sorry to hear that you are starting to have symptoms again. It is especially hard to have to work "around" the pain. I personally have not had the surgery, but I can imagine that it must be kind of frustrating to have had the surgery years ago and are now starting to have problems again.
Have you started seeing a doctor again? Hopefully they can help you with some of these reoccurring pains. I imagine with you driving long distances though, taking pain medicine would probably be out of the question.
Keep us updated as to what is going on, and again we are glad to have you with us.
Thanks for the positive & helpful comments everyone! I know that the amount of hours and type of job I'm working is not ideal. I've been talking to my boss about it, and we're trying to work out some solutions without me having to quit.
I also agree it's probably time I should go back to my neurosurgeon, and have some new MRIs (including flex/extension ones) done. It's hard because I went to the Chiari Institue on Long Island, which is about 4 hours from where I live, and don't have anyone locally, so going down there is a trip within itself.
Hi, Emmaline! Yes, I have been diagnosed with dysautonomia. It presented more as POTS when I was a teenager but the tachychardia has lessened as an adult and it's more NCS/orthostatic hyptotension. Right now I'm on midodrine and fludrocortisone. Thanks for the link to the website, seems like there's lots of info there!