I’m a 28 year old single father of 2, and I had 3 (failed) emergency decompression surgeries in 2013. It has led to a whole host of ppst surgery problems, but the doctors available to me up here don’t believe me. (I’ve spoken to my primary doc and she told me straight up that I’m not gonna get anywhere up here because the doctors in this area are part of a “good ol’ boys” club, and since the head of neurosurgery is the one who botched my surgeries, not one among them will step on his toes). These post surgery problems have made it very difficult to hold a job, and I’m running out of options. I have children who depend on me, and I’m really striking out here. No employer is understanding of these situations, and they are not forgiving when I need a day off because I can’t even get out of bed without almost passing out from the head pain. I had tried to start my own business in the hope that it would provide the income I need for my family, but I ran out of capital to start it with before it could even really get started. Does anybody have any advice about dealing with a situation like this? Chiari took a lot from me when it was all said and done, and it just seems like it won’t stop taking.
Sounds like you are in a tough spot with family and financial responsibilities and uncertainty with how to fulfill them while looking at your current situation of Chiari symptoms and employment expectations. There are lots of things to assess with head pain and corresponding treatments to go along with findings but not so many ways to get employers to do what you want!
There is not a lot of activity on this site but be sure to do lots of reading and find some topics that provide insight to head pain or other symptoms that you are experiencing. Medical exemptions, work restrictions, or workplace rights are not my expertise.
What I do know is that medical doctors do not always know how to deal with Chiari folk after surgery is done and the MRI looks good. They simply do not have the knowledge base to assist. Sometimes they truly do not believe you or think that there are psychological issues, but more often than not, they actually do not know what you are experiencing nor why and have no insight to assist. It is hard for doctors to admit that!
The sad part is they have medical evidence that I’m telling the truth. There have been a few times I’ve had to go to the emergency room because the pain is too severe and every time my blood pressure is at stroke levels. Always the same issue. It just sucks that there’s no middle ground here I guess.