Chiari Online Support Group

Strange new aspirational issues after surgery

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.

I’ve not had the surgery, so I’ve not had problems as bad as you have. But my problem started in 2014, and I do notice that I always have an urge to have several bowel movements early into my headaches.

Then as the pressure feeling in my head gets worse I tend to vomit repeatedly, the most has been 13 times in one day, normally every 30 mins to 2 hours or so regular when the pressure feeling in my head seems to increase and something changes (it releases?) So there is some sort of link, early on I did wonder if my headaches were weirdly caused by constipation since I always seemed to have a need to have lots of bowel movements, but nope, taking laxatives didn’t stop them.

Then I can go a whole week after a headache before I have another bowel movement, probably partly due to being emptied out :stuck_out_tongue: But even then 1 week is a long time. So whatever part of my brain is being squeezed seems to be making my bowels very active, and then a tad slow.

I’ve not had a bad headache for a few weeks now though (a good patch) and things are fairly regular, so the headaches seem to cause the irregularity, I don’t feel constipated either when I do not go for a long time (I got concerned in hospital and ate a whole bag of sugar free sweets to speed things along… They were almost too effective!). I’ve never had trouble swallowing or Syringomyelia though, so you’ve had some nastier effects there, but the bowel thing seems common. In my case it gets back to normal if a long enough time passes from the last headache.

Thanks for the reply Lomax!