Chiari Online Support Group



My name is Sarah and i was diagnosed with Chiari in March. I’ve not had one headache, but I have had dizziness 24/7, nausea, heart palpitations, anxiety, depression , numbness and tingling in my hands, feet and face, pressure in my head, neck and ears, acid reflux, indigestion, loss of bowel function etc. The nausea has been the most debilitating and i was recently diagnosed with delayed gastric emptying (gastroperesis). I’m scheduled for decompression surgery on December 28th and I am so scared. I’m hoping to get relief from this nausea at least. Anyone else diagnosed with delayed gastric emptying find any kind of relief after decompression surgery? I need hope that I’ll be able to live my life again. I’ve been feeling so depressed and hopeless lately reading horror stories online. I can’t continue to research, but i do need some answers.


I didn’t really have headaches either - just massive pressure like my head was a champagne cork ready to blow. I had constant dizziness, nausea, Afib, numb hands and feet, gastritis, earaches, anxiety. I had decompression Oct 24, 2016 and was flat out terrified. My recovery was very traumatic, but the surgery was a huge success. The pressure is gone, tingling gone, nausea gone. Afib - gone. High blood pressure - gone. I am still struggling with stomach acid issues and have to take an acid suppressant. It is the only med I have to take now. I can’t even remember the last time I took a pain med - even a tylenol or ibuprofen. Dr thinks it has more to do with the medications I had been on for years more so than the Chiari itself. She says the gastric issue is a side affect from steroids, pain killers and the lupus meds they put me on because they initially thought I had lupus, etc. Surgery was the best thing I could have done. I hope yours is successful. The first 10-12 days post surgery are tough. Drink lots of water, rest, walk periodically, and take gentle care of your body. I had a wedge pillow that was perfect for recovery, ice packs and heat packs.


How soon after surgery did you start getting relief from the nausea? My surgery was done on the 28th, it’s two days later and I’m having bad indigestion and nausea. It doesn’t matter what i eat or drink, it’s so bad.


Is it any better yet? Mine took a couple weeks to subside. My surgeon told me the area they go into - the Dura is where the sensory pathways for nausea and vomiting are. She said it is critical to ensure the patient does not vomit after surgery so they pumped me full of anti nausea meds for a couple weeks after surgery.


It might be slightly better, I’m only 3 weeks out now. But nausea was my longest standing symptom so I’m told it could take a while to get better.