Post by avah1969 on Jul 31, 2017 10:25:17 GMT -8
Today I attended my appointment for an MRI. I was given the details of the appointment over the telephone - be there for 10am, report to ward ...., then meet with the consultant at 1pm. I got to the ward and they had no idea who I was, there was no record of me having an appointment for an MRI today and the consultant I was supposed to speak to was not even on shift!
However, the staff on duty managed to arrange an MRI slot but not until 2pm, so I had a long and uncomfortable wait. Shortly after my arrival, the ward consultant came and asked why I had been asked to attend the neurosurgery unit and I explained that since my op nearly 10 weeks ago, I have had little symptom improvement, my bladder and bowel dysfunction remains the same and that I now have (new) bi-lateral sciatica and an unusual 'numb' feeling as if I have a wet sponge between my legs. The consultant looked concerned and immediately told the nursing staff on the ward that I was to fast for potential surgery. I panicked a bit at the thought of more surgery but my wife explained it was just precautionary procedure and calmed me down.
The MRI was eventually done at 3pm and was with contrast, which I was unaware of until the last minute. Following the MRI, I went back to the ward to await the results.
At 4:10pm, a different consultant from the one I had seen this morning approached us and explained that the MRI had shown that there had been no change in the alignment of my spine since the surgery and as far as he is concerned everything is where it should be - although he did state that the other disc at L5/S1 is still herniated but there is no compression on the cauda equina and all nerve roots are visible, intact and are not trapped.
As a result, he explained that the sciatica I am now experiencing in my right leg is most likely compensatory pain from walking and moving differently due to the left sided pain I have been in since before the op - I asked how I could still be suffering from sciatica if there is no compression on the nerves but he brushed me off and changed the subject. He then stated that the feeling I am getting between my legs is most likely haemorrhoids!?!?!? I've never had haemorrhoids in my life and my wife stated that she would have noticed if I had them, given that she is a nurse and has helped me with suppositories etc over the last few months. This 'numb' symptom was therefore also brushed off. I did feel like my symptoms were being dismissed and minimised as trivial. However, he did say that he will refer me to urology for further assessment in relation to my bladder issues. He then made his excuses and left. No neuro exam was performed on me today.
Am I right to feel like I am not being taken seriously, or am I making more of this than I should be? I honestly felt like bit of a fraud when I left the hospital today, thinking that my symptoms mustn't be that bad and I must be making a mountain out of a mole hill.
I really have lost faith in them after what I have been through, especially after receiving a copy of my medical records last week and noting several discrepancies with the recording of my symptom history. For example, they somehow managed to contradict my symptom history in documents which were filled in and recorded on the same date by the same person - one section of the document noted my areas of numbness and the other stated that I had no numbness, one stated that my neuro exam found no knee, ankle or plantar response in my left leg but the other stated all reflexes were normal, they noted on 3/4/17 that I had symptoms of sciatica but that my urinary symptoms were not in keeping with such a diagnosis and therefore they were querying cauda equina, but even though they suspected cauda equina they did not MRI my spine till 5/4/17, my principal diagnosis following the MRI on 5/4/17 was recorded as cauda equina compression but the receiving hospital disagreed with this and discharged me with sciatica without operating. I was only operated on 8 weeks later thanks to my physio recognising the severity of my MRI results and symptom history.
Throughout my records they have dismissed my urinary symptoms and therefore ruled out cauda equina involvement - their reason for coming to this conclusion was due to my ability to empty my bladder (eventually), they did not seem to be concerned by the difficulty that I had trying to initiate urination nor that I had no bladder sensation. I also note that the nursing staff stated in my care plan that I was passing urine overnight using bottles - this was not the case. I was given urinary bottles at my bedside because I was bed bound and they were left there 'just in case' I needed to go. It was usually 16-20 hours between episodes of passing urine overnight and this was only because my wife encouraged me to attempt urination and assisted me in doing so - the nurses were made aware of my difficulties each time but I was not catheterised until 5/4/17, when the MRI showed cauda equina compression. No elimination charts were in place to monitor my fluid intake and urinary output until I was catheterised, at which point it was noted that 1500mls+ had immediately drained from my bladder upon catheterisation.
I think I just expected to be feeling better than I do by now and didn't expect to be getting new symptoms if all is well. I also do feel let down in the way I've been treated.
If you think I'm being silly and just need to man up then please tell me. Maybe a verbal kick up the backside is what I need to stop feeling sorry for myself.
Thanks again for listening.