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Hi, my name is SAZ99!

SAZ99

Hi,

I'm joining this forum to find out information that can help out my mother, who is a paraplegic since 2017. I can also share experiences from over the years. Her paraplegia is slightly unusual in that it relates to a spinal cord infarction, sometimes called a spinal cord stroke, that resulted due to an infection near the spine, likely accelerated by an incorrect diagnosis, resulting in a morphine prescription (morphine depresses the immune system. If you have a combination of a sore back, a fever, its possible the cause is not orthopedic. A GP should be ordering an emergency scan and possible spinal decompression, rather than reverting to a pain killer).

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Jimm_Alumni

Hey @SAZ99, welcome to our community 😊 I'm sorry to hear about what has happened with your mother. I have heard an infection in the spinal cord can cause such issues. How is she doing now if you don't mind me asking?

SAZ99

Going downhill. There is no recovery. Affecting an older person is fairly devastating; you're not really going to gain the core strength, the wheelchair skills to exist. The injury itself gives problems around where the spinal plates were put in. Being in a wheelchair has likely caused the neck vertebrae fractures show she now has, leading to loss of mobility with her hands.

When the injury first happened, her experience in the spinal unit was not great. First, she had to wait in an acute hospital for a bed for 5 months. When transfered, she was one of only 2 women in the unit, the rest being mostly younger guys, with quite a few there following bike accidents. They got all the attention with physio, getting to play wheelchair rugby etc. She didn't. Her colostemy was delayed, leading to no rebab for many months. There were complications which are still being felt today.

Her main problem has been pain management. Support from GPs has been poor, and medication changes not systematic. She was on a lot of stuff PRN; being a retired nurse, she knew what that was, but over time, thats gone from take as necessary to take as much as you need. I was aghast sitting in her garden with a GP who thought it was perfectly ok to take as much dihydrocodeine and diazopam as she wanted. It was fateful advice, because it justified in her mind routine overdosing on these medications. Overdosing on these isn't going to have the effect you think; overdosing on diazopam means the body becomes gradually immune to it. The dihydrocodeine just leads to constipation in the first instance, which in itself causes pain.

Summer last year was a crisis. She had been in continuous pain. I caught the carers handling her controlled medication (one was a Romanian nurse, but he was not licenced in this country, and he became a little blase handling medication). The reduced finger mobility meant she could open blister packs herself, so the medication came loose from the pharmacy. Disaster. Finally got a pharmacy to fill dossett boxes. That also backfired, as overdosing continued

Following numerous emergency admissions, always due to pain, and always nothing done, she finally got a date to have a colostomy surgery. Only the surgeon cocked up by telling her a different date from that on the letter, which he doubled down on. She missed her surgery

The continuous pain has lead to a change in brain vascularisation; how she reacts to pain. Now her reaction to pain is delusion, so for a long while she became very religious (she is not a religious person), convinced the doctors were killing patients and attacking her. That still comes back, when she's tired. She lost too much weight and a respiratory infection picked up in hospital meant the hospital refused to carry out the missed surgery.

The good news is that 12 months ago, she was 44kg, and is now 59kg, after I insisted the home give her protein shakes. Due to abdominal pain, she was refusing solid food, just eating the desserts, and consequently wasting away. 12 months ago, she could self transfer from wheelchair to bed using a rotunda (entirely self taught) unaided. Now she needs a hoist, and the home will not shower her, just bed baths. Its miserable. But I am grateful for the CHC funding. A psychiatrist thought she was developing Lowey body dementia, based on her shoulder stiffness. I don't think he realised she has a neck injury. He didn't bother ordering a scan. She has some short term memory issues, but medium long term is spot on. A complex case.