Chiari Online Support Group

Does how we present our symptoms matter?

I started to respond to Chiari Severity Index but then thought that maybe it deserved a separate posting.

Just a thought… But I found that focusing on the lack of energy, poor brain function, and anxiety behaviours with doctors turned out to be counterproductive. In the early days of Chiari, these symptoms were the most debilitating, the most concerning, and affected work and family. I emphasized and talked about them the most. I was scared! I was truly suffering and wanted people to know it and understand it!

Doctors had a field day as they got to send me off to various psychologists and tried out the latest new drugs. I also had classic Chiari symptoms at the same time which were shuffled off to the side as they did not make sense and were quickly explained with psychological reasoning.

The not so skilled psychologists treated me for depression and got my doctors on board with medication. The three kinds I faithfully tried did not help and the side-effects were worse than not taking them. The more skilled ones did more advanced assessments and determined that I was not psychologically afflicted - no depression or anything else. No need for medication but they had no solutions for what was ailing me.

My point is is that I eventually separated “psychological” symptoms from any discussion with doctors I was seeing for my brain and neurological concerns. I still saw a psychologist on occasion to make sure I was okay as the stressors of life with a chronic illness need addressing. What I did repeatedly say to doctors is that I had had psychological work-ups done and any psychological concerns, which I did not have, were not affecting me physically. “Could we please focus on medical reasoning for assessment, testing, treatment, and diagnosing for my ailments?”. I used many different forms of this phrase to get doctors to think medically and to not focus on the mental health idea that popped into their brains first. I focused on the fact that I had an MRI that showed Chiari. I had symptoms that fit into that presentation.

I do not dismiss anxiety and other stressors of Chiari. They are real and challenging for all involved. So much of Chiari is ruling out things and I guess that mental health concerns are no different. However, mental health concerns can detract doctors from seeing a clear picture of Chiari.

You read that doctors make up their minds on a course of action very early on in the visit with patients. By getting them off mental health (and shuffling patient to a different branch of medicine), they can then better focus on their own specialty of medicine. Get help from the mental health specialists as needed, but perhaps we need to think further on what we take symptom-wise into the medical doctor’s office. I focused on neuro symptoms (vision, balance, brisk reflexes, muscle weakness and atrophy), physical symptoms (the Chiari head ache, thoracic pain, muscle spasms.

If you can say that mental health professionals do not think that psychology is contributing to the signs and symptoms of Chiari, what else is involved? Start from there…