Hey all. I am writing for my wife who is disabled. 10 years ago she started suffering from a variety symptoms which became so severe she was told she would likely not live past 6 months. Shortly after this, they found a tumor which was tethering her spinal cord. When the tumor was removed, it revealed her spinal cord was being stretched at least 2-4 inches. The tumor was removed and by managing her symptoms (especially chronic pain) caused by severe nerve damage, she has made an incredible recovery... but the nerve damage is permanent.
As she got sick and her pain level increased, she started to go into what she was told were pain comas. During which she was technically conscious but would blank out and babble incoherently and was confused, appearing completely disoriented. She had no recollection of any of this, thinking she went from the moment before the coma to the moment after in the blink of an eye.
When the pain comas happen she describes the sensation of slowly submerging her head into water, starting at the back of the head and slowly moving towards her face, as though she is lying back into a tub. She says it feels empty and black, like every part of her brain that was touched by the water was going shutting down. She said she felt like she was losing parts of herself : memories, skills, her own name. When it reaches her face everything goes blank. She says she felt like she was trapped forever in this emptiness which made her feel like she didn't exist anymore. She was unaware of anything going on around her despite being appearently conscious.
She continues to experience this sensation once or twice a month but with her current symptom management regimen, it's rare for her to feel completely "submerged".... sometimes she only feels a half an inch, sometimes it feels like it's as far up as right behind her eyes. The more severe the episode the less she can function.
Loss of function can include inability to:
Remember date/time/her name
Use motor skills
Empathize or feel any emotion
This experiment continues to be a strong fear of hers, even the slightest beginning of this sensation will cause her to panic and go through depression.
We want to know what is going on that causes this sensation... brain damage? Nerve damage? Has anyone else ever felt like this? Are there ways to prevent or cope with it? Is there a way to keep it from progressing? Is there anything I can do for her as she goes through this?
She is scared she will one day be trapped in the water forever. **********************************
No one on the Spine-Health patient forums is medically qualified to provide any advice