Hi all, New to the forum. Been dealing with chiari and syringomyelia all my life. I had my first decompression surgery when I was four years old. Everything was quite solid until high school when the headaches started again. I fought the headaches for twelve years until just recently I had my second decompression surgery Aug 25th of 17.
Since then, it has been quite a journey. Sadly, it seems things have gotten worse for me. Headaches and dizzyness have been doing much better. However, I have developed totally new aspiration issues. A month after surgery I was in the hospital with pneumonia. Lungs cleared up and went home, Didn’t really suspect anything just thought I was unlucky enough to get sick. A little over a month later I spent an entire day vomiting. Absolutely nothing would stay down. Went to the ER at about 4pm continuing to vomit, I passed out at about midnight and woke up eight days later on a ventilator! diagnosed with aspirational pneumonia. About another month later I had another day of severe vomiting and wound up in the ER yet again with pneumonia.
It has been an unending battle! Before the recent surgery I had some choking issues with meals but no vomiting and aspiration. I’ve also noticed that my digestion has slowed down tremendously. My metabolism used to be very quick, I used to have three BMs per day now I am lucky to have one a week. I now have gastroparesis. I am taking reglan to try and speed things up again but it doesn’t appear to be working. Dr’s are talking about a feeding tube and I’m really not keen on that. I’ve seriously altered my diet, eating small ground up meals and drinking limited liquids.
I have been having issues with liquid, if I cough hard or sneeze sometimes liquid will come up into my mouth. It feels like a new unfamiliar reflex is happening in my throat during a cough or sneeze and liquid just comes up without warning. Has anyone else experienced anything like this? Any insight is appreciated.