You all seem to have disappeared but I will finish the story
2009 oct - Dec were hell, my Fil was dying from Parkinsons in a nursing home, I was a mess, could hardly walk and had to start saying no to work so finances were tight.
I had repeat MRI scan and saw the same consultant, he never examined me, asked about my symptoms just asked if I'd pissed myself and as I hadn't that made me a non emergency. I was due to have decompression surgery on 26/01/10 I had been plagued with uti's for months
My FIL died on 19/12/09 Christmas was shit
We had a lovely funeral on 07/01/10 by which time I could only walk with my husband and my son holding me up. I came home and went to bed
09/01/10 dh persuaded me to come and eat with the children, I sat down for maybe two minutes but couldn't tolerate the pain. I crawled back upstairs and stood up holding onto the banister. I took two shuffles forwards and felt excruciating pain in my back, my legs gave way and I wet myself. My first thought was "whoopie I've pissed myself now I can have surgery and get my life back"
An ambulance arrived, I was taken straight to the spinal ward, a doctor came, he looked gravely concerned. I got frightened for the first time, the on call consultant, who wasn't a dick came in at 2:00am, I had a bladder scan and despite having pissed myself was retaining 1.8L of urine, they inserted a catheter. A consultant radiographer came to see me and I went straight from MRI scanner to theatre for seven hours of surgery. L3 had ruptured and it and L4/5 went straight through my spinal cord.
There were problems post surgery getting me breathing again, I spent five hours in recovery.
Back on the ward nobody told me anything, a physio came and asked me how long my feet and lower legs had been paralysed!!!!! How had I not realised I couldn't feel them, it did explain my shuffling gait though. I was fitted with AFO splints and told if I worked hard I would get everything back. Day three the catheter was removed and when I couldn't pee I was given a catheter, no instructions and told to have a go at doing it myself. The nursing care was appalling, truly appalling. It wasn't all bad, most of the pain had gone, but there was no referral to a spinal injury unit, no aftercare, no compassion and nobody answered any questions.
Six days after surgery I was waiting to go home and my dd's consultant came onto my bay to see one of her patients, she clocked me did a double take and asked me what had happened. She took over my care but was going on maternity leave the next day. There was an MDT meeting and she came and sat on my bed and explained that what had happened to me shouldn't have happened and everything would be explained in my discharge letter.
I went home, my girlfriends rallied round, encouraged me to get out but it soon became clear a wheelchair would be required.
My life was destroyed and I quite simply didn't want to live it anymore.
My discharge letter said Cauda Equina Syndrome caused by failure to act on red flag symptoms. Slowly it dawned on me that I wasn't going to get better.
Around this time my dh's ex also became chronically ill, had to give up work and there was lots of pressure on the kids, they took it out on me. Those poor kids were constantly dialling 999 because they were convinced (by her) she was dying, she was never once taken to hospital and had every medical test and scan invented. Not a night in hospital, no diagnosis and finally this year her now adult children have finally accepted that the only problem she has is a psychological one. It's bloody tragic.
2010 was the year from hell - a repeat admission to the spinal unit on 02/06/10 because I started to lose the feeling in my left arm. My friends stopped visiting, I was always asleep, I slept in 20 minute cycles, sleep wake up rinse and repeat. I was transferred to a rehabilitation unit and finally went home on 13/08/10. My eldest daughter gave birth to her second DD but I couldn't go and be with her.
By now I had a Solicitor who specialises in Cauda Equina, he has become a close friend.
More surgery was mentioned, I wasn't keen. Youngest DD got a music scholarship to a boarding school for sixth form. Half a term in the police arrived on my doorstep to tell me that one of her music teachers had been arrested and they had evidence that she was one of seven girls he had sexually abused. No wonder she wanted to get away, it happened when her mummy was in hospital, if I ever see that man in the street in years to come I will rip him apart with my bare hands.
2011 our first dgs was born and my son and his partner had moved closer to us to help. My DD travelled from NZ with her seven month old and toddler alone to see me. It was a disaster, she wasn't prepared for the shock and reality of how broken I was and she fell out with everyone. She was suffering from pnd and needed her mum, I will take that guilt to my grave.
2011 I was also diagnosed with suicidal depression, there were carers, they helped me dress and wash and were pretty shit.
There were three admissions to hospital with pneumonia each time it was blamed on me taking too much morphine - I hadn't.
2012 my father died but I didn't really care, we had no relationship it's very sad. My second eldest son was diagnosed with MS, it had taken him almost two years to tell me, I tried to kill myself twice.
My consultant left for another hospital and handed me on to the one who still looks after me today. He persuaded me to have a fresh MRI scan, told me he was sorry, that meant so much. The MRI showed healed fractures at C4/5/6/7 and bone fragments sitting next to my spinal cord. I had surgery a few days later, bones re broken and internal fixaters put in. It was confirmed that my neck was broken and could be clearly seen on the original scan unfortunately I was outside the four year negligence claim period. It meant dick shit consultant got away with that. Once again there were breathing problems post surgery.
2013 utter shit, pneumonia, chest infections and still the fucking 20 minute sleep cycles. The only good bits were my clinical negligence claim settled, another grandson arrived. By now I had carers with me all day everyday basically on suicide watch. My step children told there dad he would be better off without me and he should divorce me, it broke his heart. I would have happily let him go, I had no interest in anything. The only good thing was a respiratory physio saw me and told me most of my chest muscles were inactive, I was only breathing into the top two inches of lung, she left me with a lung volume recruitment bag that I could use to fully inflate my lungs, she suspected I was unable to clear carbon dioxide but no tests were ordered. It did transform my life, I was awake more, I could do things and did experience a little bit of joy.
2014 we moved out of our house for almost ten months while it was adapted for my needs, I love my home. Things with my step children were intolerable, they no longer spoke to me even when dh was around, when he wasn't they were hurtful.
Exhausted now - if anyone wants me to continue do let me know.