Chiari Online Support Group

4 months post decompression

Hey guys,

First post, hoping to connect with some people and learn about others experiences of chiari.

I was diagnosed with Chiari and syringomyelia after about 6 years of feeling that something was wrong - started with right neck pain and numbness and more recently lead to right hand numbness, nystagmus when looking to the right mostly, dizziness and swallowing problems. After losing faith in my GP and being told I had acid reflux when nothing was found at ENT I was referred via an eye test to opthamology and on for an MRI.

I received a call from neurosurgery a couple of days later and was told that I had to go for the decompression urgently (5 days later). The tonsils were only 5mm but syrinx was “extremely abnormal” extending from lower medulla down to lumbar spine.

Anxiety is something I’ve had to cope with since my early twenties and I regularly feel like passing out - no idea if it’s related. In the hospital my heart rate was constantly fast, had to keep asking for oxygen and every time I tried to sleep I would either jolt awake or get really lucid horrible nightmares but feeling like I was still awake.

I’m wondering mostly how other people felt at this point in recovery. I went back for an MRI 4 weeks after surgery because my swallowing felt worse than ever, it feels forced or like it’s not working in time and I get small bits of food stuck at the back of my throat. At this appointment and at my review on the first of this month I was told that the results were good, syrinx had gotten smaller, tonsils had gotten smaller and just to try not over think it carry on as if this hadn’t happened.

I don’t know what to do at this point. None of the symptoms have really improved and the swallowing has gotten to the point that I’ve lost about a stone mostly eating junk like chocolate because it melts and I still have to take liquid with it. It seems to get worse at night. I had swallowing problems before the surgery but I was able to get through normal meals and was quite fit. I’m constantly spitting food out because I can chew forever and not feel like I’m able to swallow. But no one really seems to be acknowledging it and I was basically told my sick line from work wouldn’t be extended further.

I returned to work after 3 months and a bit but the exhaustion is really getting to me and it feels like it’s making everything worse. Especially as I’m finding it difficult to fit in food around it.

Has anyone had similar experiences and gotten past this?

I can tell you that things definitely will improve again by the time you reach 8 months post op.

Unfortunately surgery didn’t help me I still have all the symptoms that I had post op but I was definitely much better by 8 months as opposed to 4 so hang in there X