Hello, my name is Rebecca, I'm 18 years old and live in Sweden. I would like you to read this story about my mother. My mother was most likely born with scoliosis, but problems didn't occur until she had me at the age of 40. My mother is going to be 59 years old in October, she was born in Nairobi, Kenya. She is not black, her ancestors come from England and the Seychelles. She is educated as a hairdresser, she had her own saloon which went great until it just became too much for her back, so she sold it when she was about 53 years and haven't been able to work or live a very active life since. She went through her first surgery in 2010/2011, they put in titanium rods to straighten her back. She suffered a cerebral hemorrhage and staphylococcus. She became almost completely restored in a very short time frame, compared to what was to come, her short term memory was a little affected. My mother has since been through an awful separation in 2013, which affected her very very badly, she took overdoses, and checked in at the psychiatry several times.
In May this year she had her second surgery. Both my brother and I were skeptical about the outcome, and urged her not to, but this surgery would straighten her back, and remove the constant pain. She has since she sold the saloon been on heavy drugs for her back. And also, the first surgery practically failed, and the titanium rods had not stayed in their place.
Okay, back to May's surgery, she was fine after the surgery, came home after a couple of days, had to wear a corset, was in extreme pain, she told me that if she knew she would be in this much pain, she wouldn't have gone through with the surgery. She went to bed one night, I sat in the living room watching television. Her door was closed so I heard her only by the banging on the wall, I came to her and she was is excruciating pain and finally I called an ambulance. This was around the beginning of June. I haven't heard her speak a word since. We came to our local hospital, but she was after a day or two moved to NIVA in Lund which is an intensive care unit that specializes in neurology (the Swedish doctor who came up with brain drainage worked there). The doctors there were very professional, and they found out that she had suffered a spinal cord infection that had reached her brain. Her whole system was infected, I don't recall by what, but there were enzymes involved, something that could have been latent. She had meningitis as well. They drained her swollen brain, and eventually put in a self-drainage tube in her skull. She was able to speak to the doctors for a day or so, but since mid-June it all hit absolute rock bottom, it went downhill with zero hope.
She fell into an almost coma-like condition, she slept nearly the whole day long, and opened her eyes only when the nurses tended to her. Her whole body became absolutely stiff, and when you took her hand her incredible tense body suffered a convulsion, it still does even to this day when you insist on moving her limbs. In the beginning of July, I massaged her body with cream and as I just naturally spoke to her, I asked her if it felt nice, and she nodded, I was overjoyed, she had begun nodding. She was moved to our local hospital and was placed in the intensive care unit, the doctors there are very engaged too, she was taken off the respirator. But since a couple of days ago she's been in the neurology unit, I do not like it at all there, I find her doctor to not be as engaged and forthcoming as the other ones. She lays alone in the room, God knows what's going on inside of her. And it's just that. Nobody has a clue. Her infection has left the body, the brain isn't swollen any longer. The only thing we know for sure is that her brain shows signs of epileptic seizures, which you can sometimes see, she gets medicated for it, and she gets cortisone, but we think it may affect her awareness, so the doctor and I have agreed to scale down and see what happens.
So let me repeat and clarify, my mothers body is extremely tense - paralyzed-like, she can't talk, can breathe on her own, can only communicate with her eyes, nodding comes and goes, has seizures, past doctors think the infection has badly impaired her brain and "left scarring" - whatever that means - but they can't say for sure what is happening inside of her brain. Truth be told, I think she is there, I think she remembers herself and everything, other than that, I do not know.
I have found different illness that I have presented to the doctor, first hashimoto encephalopathy and today I presented him with Gullain-Barré, if you want to understand more Gullain-Barré is to the very minor detail exactly what my mother has been through. When he dismissed it you can imagine I was crushed, I really thought this is it, and I haven't dismissed it yet, I will send it to other doctors and ask for their opinion. He said that there is always something different in the spinal fluid, yes, there is more protein, but in the information regarding the syndrome it also says that symptoms varies and it can be hard to diagnose in it's earliest stages. He also said that my mother still has her reflexes, but in the information it says that reflexes are USUALLY gone.
It is an absolute tragedy, and my mother is suffering beyond my imagination, but I too am in agony, as powerless as I am. I will never give up on my dear mother, and when I told her not to never give up, she nodded.
Anything you have to offer is greatly appreciated, thank you very much for reading and thank you in advance.