Dr says I have sciatica NOT cauda equina syndrome? HELP May 17, 2017 11:36:08 GMT -8
Post by avah1969 on May 17, 2017 11:36:08 GMT -8
I would really appreciate if you could read over my story and provide opinions/similar stories. I’m not convinced I’m being treated properly or being given the correct diagnosis. It’s quite long-winded but please please bear with me. I really need your help, I feel like I’m going mad. To put this into perspective: I’m a 48-year-old male with type 1 diabetes. Other than that, I’m relatively healthy and my diabetes is well controlled.
On 4th December 2016, I was washing my car when I felt a twinge in my back. I tried to stand up but my legs buckled beneath me and I couldn't straighten up. I crawled into the house on all fours and my wife helped me onto the couch. The pain was unbearable and not like anything I had ever experienced before and was radiating down my left leg. I took paracetamol and ibuprofen and lay resting for a couple of hours. When the pain had not eased, my wife (a registered nurse) said she was taking me to A&E - I agreed and, as I do whenever I leave the house, I decided to go to the toilet before making the journey. I slid down onto the carpet and crawled through to the bathroom on all fours. I managed to sit on the toilet and remove my trousers with my wife's help but upon doing so she realised that I had been incontinent of urine already but I had not realised this. I didn't appear to have felt the urine passing - I put this down to the amount of pain I was in at the time but my wife recognised the severity of such a symptom alongside the back pain and she immediately called NHS24. She reported my symptoms to NHS24 and said she was concerned about moving me on her own if I had suffered a severe spinal injury - they took the details and a 'consultant advisor' called back within 20 minutes. During the call the advisor mentioned that the symptoms suggested possible cauda equina syndrome and they asked my wife if she could get me to A&E (they were reluctant to send an ambulance and kept badgering my wife to take me herself). We eventually got to A&E and my wife booked me in - by this time I was in too much pain to sit down and had to stand, propped up against a wall for 2.5 hours before I was taken for a review. The usual neuro assessments were performed - Leg raises on both sides were approx. 30 degrees with severe pain, sensation around the saddle area was deemed normal, anal tone was deemed normal, an area approx. 15 cms long by 5 cms wide along the outer left thigh was noted and there was no/reduced left leg reflexes noted. Mobility was clearly difficult and obviously accompanied by severe pain. I was unable to feel any bladder sensation and did not feel as though I needed to go to the toilet. I was asked to try to pass urine into a bottle so it could be measured and then a bladder scan performed immediately afterwards. I struggled to pass urine, could not initiate urinary flow for approx. 2 hours post neuro assessment - when I did eventually managed to begin urination, the flow was intermittent and I passed approx. 1500mls. Even with my bladder full to capacity, I did not feel the need to urinate. The post-void bladder scan showed minimal residual volume at around 50mls. They therefore decided that it was definitely not cauda equina syndrome as I could empty my bladder and they sent me home with co-codamol for ?sciatic pain/severe muscle injury. No referral was made for further investigation, review or a scan.
The pain and mobility issues continued and the bladder issues continued. I was attending a sports therapist for a shoulder injury and I explained my injury to him, stating that things were getting worse and that I couldn't get on top of the pain. He advised me to contact my GP for amitriptyline - I met with my GP in February 2017 and explained my symptoms to him - he agreed with the hospital diagnosis of sciatica, gave me amitriptyline and told me to continue taking the pain relief. This did not make any difference.
31st March 2017 (Friday) - I awoke in extreme pain and had to take the maximum amount of pain relief allowed and use heat pads to get just enough relief to allow me to get out of bed. I was 1.5 hours late getting to work but I was determined to get there (having not had a day off sick in 15 years). After 30 minutes at my desk I was sick with the pain and I came home, lay in bed and did not move the rest of the day. I did attempt to get an appointment with my GP but they did not have anything available until the following week. My wife was on a 12.5 hour shift that day and when she arrived home at 9pm, she insisted that if the pain had not gotten better by the following day, then I was going back to A&E. I was unable to move my bowels that day and urination was even trickier than before.
1st April 2017 (Saturday) - I was unable to mobilise out of bed due to the pain - I had still not moved my bowels and it had been 16 hours since I last urinated. My wife called for an ambulance as she was unable to help me out of bed to take me to A&E. The ambulance arrived and it took three of them to get me down the stairs. At A&E my wife went to book me in and I was taken directly through to minor injuries for review. I was again given the same neuro assessment as before - Straight leg lifts 30 degrees with pain, no/reduced reflex in the left leg noted, numb patch on left thigh still present, no bladder sensation even though I had not passed urine for some time, saddle area sensation and anal tone deemed normal, mobility clearly impaired and with significant pain. I was given 20mls of oramorph in a space of 1-2 hours but this gave little relief. I was again asked to pass urine and then a bladder scan would be performed. It took me over an hour to pass urine, I had to use all my lower muscles to strain, the flow was intermittent and I was unable to stop the flow when the bottle had been filled to capacity and my wife had to quickly position another bottle, whilst trying not to spill the full one. In total, I passed 1600mls but did not feel the need to urinate. The post-void bladder scan recorded 20mls residual volume. The Dr was confident with the bladder scan result and again ruled out cauda equina syndrome. She was in agreement that it was muscle damage/sciatica. They decided that it would be best for me to get as much rest as possible and they said they were happy to send me home with oramorph for pain relief. My wife was unhappy with this decision as she had seen how I had been at home and understood that the bladder issue was significant. She also stated that 20mls of oramorph in 1-2 hours was ineffective and that this dosage was unsustainable against the recommended maximum daily dosage. She pushed for a scan - the Dr said she could have me admitted to the hospital for a scan but it would not be performed until the Monday at the earliest and I would therefore be spending 2 nights in hospital when I would probably be more comfortable at home. By this time I was exhausted and just wanted to go home if they were not going to do anything further. The Dr advised us to return if things deteriorated.
2nd April 2017 (Sunday) - I remained in bed all day, could not control the pain, had not moved my bowels in 3 day and the urinary symptoms were still present.
3rd April 2017 (Monday) - My wife called for an ambulance as there had been no improvement in my condition. I was re-admitted to A&E and after a 4.5 hour wait before I was seen, the same neuro assessments provided the same results as previous. The Dr began to spout the same diagnosis as before (severe muscle damage/sciatica) and said he was happy to send me home with pain relief. Both myself and my wife verbally leaped on him because we felt my symptoms were not being taken seriously nor were we being listened to. After a heated discussion, the Dr agreed to admit me to the hospital for an MRI scan. I spent the Monday night in the hospital assessment ward and was given further neuro assessment by the Drs on that ward - by this point I was bed bound and had had 6 neuro assessments and PR exams by various different Drs. I was told I would receive a scan the following day.
4th April 2017 (Tuesday) - I was transferred to another ward. I was bed bound and deemed a falls risk. It had been 16 hours since I had passed urine and I could not get a flow started no matter how hard I strained - this was reported to the nurse looking after me. I eventually passed urine after 20 hours and with much difficulty - the urine was not measured nor was I bladder scanned. Come 4:30pm, I had still not been taken for my scan and my wife asked when I would be taken - she was informed that I was not classed as an emergency and there were 25 people on the list before me that day, so it was unlikely I would be scanned until the following day. We were both unhappy with this but they would not budge.
5th April 2017 ( Wednesday) - I was taken for an MRI at 1pm - the pain undergoing the MRI was excruciating as I was struggling to lie flat but had to in order to get the scan. I was in the scanner for 35 minutes. When I returned to the ward, they could not give me any pain relief as they had given me everything they could before the MRI in an attempt to make it less uncomfortable. By this point I had again not passed urine for 16 hours and had not had a bowel movement in 6 days - the nursing staff were aware of this. Within 45 minutes of having the MRI the ward Dr spoke to me and my wife, informing us that I had a significant inward prolapsed disc at L4/L5 and a smaller inward prolapsed disc at L5/S1. The radiologist had reported that these were compressing the cauda equina and the Dr had therefore contacted a specialist in Edinburgh for advice. The advice given was to catheterise me, fast me and have me blue-lighted to Edinburgh for emergency surgery. Although surgery is never a nice prospect, I finally felt that I was being listened to, there was a fixable problem and I would get some relief. The catheterisation went without a hitch as I didn't feel a thing - 1600mls drained from my bladder immediately. The ambulance I was taken in had broken suspension, which was due to be fixed the following day, this combined with having had no pain relief for 5 hours and still suffering from the MRI scan made the journey unbearable and I was sick with the pain. Upon arrival at the hospital in Edinburgh I was unceremoniously deposited on a bed in a bay of 4. A few nurses said hello in passing but no-one came to speak to us for nearly 2 hours. A consultant with no people skills eventually took an interest in me but was more interested in impressing the female student he had by his side. As he read through my notes, the student performed all the same neuro assessments as had been performed 6 times previously - the consultant was not even watching what the student was doing. He then asked the student to relay her findings, to which she answered that all seemed normal. I found this confiding given that all 6 tests previous had noted the numbness in my left thigh, 30 degree straight leg raise with pain and reduced/no reflex in my left leg. I therefore questioned this. However, following the student's review the consultant informed me that surgery was not required, it was not cauda equina syndrome (never was) and it was definitely sciatica. He continued to say that I would be given pain relief and physio and then once I was satisfactorily back on my feet, I could go home. By this point, I was in a lot of pain, had not eaten for 8 hours (I'm type 1 diabetic so my blood sugar was dropping) and my wife was becoming upset that we were being messed about again. We had a very loud discussion with the Dr, who slunk away very quickly and refused to come back and speak to us, instead opting to send his student. During the discussion with him, I had stated that the level of pain relief I had been on was ineffective and he said he would review/increase it - after 10 hours without pain relief a nurse came along with a pot of medication. I asked what was in it and she hesitantly looked in the pot and said em......... My wife took the pot off of the nurse and informed me that it was the same medication and dosage as before, so the Dr hadn't reviewed the medication or increased the dosage, as promised. We asked why I had been transferred to this hospital if they were not going to do anything - they said that surgery was never their intention and I had been transferred solely for pain relief and physio, they also stated that they are the only people who can perform the neuro assessments - to which, I informed them that what they had done to me was exactly the same as what had been done 6 times at the previous hospital. Their response was 'you didn't have to accept the transfer you know, you could have refused'?!?!?! I only agreed because I was told I needed emergency surgery - I was hardly going to refuse. My wife reluctantly left me at the hospital but they had informed us before she left that they would make arrangement the following day to have me transferred back to the hospital I came from, so that I was closer to home, as they could give me pain relief and physio.
6th April 2017 – I was told by the nursing staff that an ambulance was booked for 12 noon to take me back to the previous hospital – I was happy with this as it was closer to home and the visiting hours were 24/7 as opposed to 2 hours daily. I called my wife to inform her and she therefore remained at work rather than leave early, which she had arranged to do so that she could visit me during the allotted 2 hours visiting time. As a nurse, she can be very difficult to contact due to not have time nor being professionally allowed to have her phone with her on the ward. At 11:50am, a nurse informed me that my transfer had been cancelled but could not provide a reason – I was getting a bit annoyed with all the game changing that was going on and I was unable to contact my wife to inform her. She was therefore unable to visit me that day. I was seen by a pain nurse and the medication regime they put me on made me very spaced out and sleepy. They were adamant that my urinary retention was due to constipation (even though I explained it was there before the constipation began) and I was given 2 enemas to get my bowels moving. After my bowels had moved, the catheter was removed to see if I could urinate. After a few hours, I attempted urination which I was able to do but with the same strenuous effort an intermittent flow as before – there was still no bladder sensation. They took the fact that I had urinated as a positive and said that I would receive physio the following day – I had ticked their boxes so far, so if the physio could get me on my feet, they would let me home. By this point, I felt they were not listening to me and if they were not going to do anything further for me then I was determined that I was getting out the following day.
7th April 2017 (Friday) – Physio managed to get me on my feet with crutches, they had me walk the length of the ward, which floored me. They wanted me to be able to walk up and down a flight of stairs before they would agree to discharge me but I was too tired and in too much pain – they agreed to come back and get me to try the stairs after lunch. I struggled but managed to negotiate the stairs so they agreed I could go home. I was told I would be referred for urgent physio at my local hospital.
20th April 2017 – still hadn’t heard from physio so my wife contacted them and was informed that, as standard, they allow 2 weeks following discharge with a back injury before contacting the patient as in most cases the back pain has decrease/resolved and physio is no longer required. I would therefore receive a letter in the next few days which would ask me to contact them to arrange an appointment, if I still required it – this would take a minimum of another 2 weeks. Therefore, urgent obviously means a 4 week wait minimum. I explained that my back pain/injury had been ongoing for 4.5 months and was therefore unlikely to resolve within 2-4 weeks and that they should have known this from the referral – they agreed to give me an appointment for the following week.
25th April 2017 – I attended my physio appointment accompanied by my wife, as I am unable to drive. The physio takes a brief history and does minimal stretching exercises with me – she states she was unable to view my scan before the appointment due to system issues and was therefore reluctant to do anything else until she had the full picture. A further appointment was made for 3rd May 2017.
27th April 2017 – I was going stir crazy in the house and approx. 5:30pm my wife and I walked to the end of our street (approx. 100 meters at most) – I found it difficult and painful but had been encouraged by the physio to keep moving when possible. We were out of sight of the house for all of about 10 minutes, during which time, my physio had hand delivered a letter through my door. The letter stated that both she and a consultant neurosurgeon in Edinburgh had been trying to contact me by telephone since she saw me 2 days previous. Upon viewing my MRI and reviewing my notes, she was concerned that nothing more had been done for me and said that 9 out of 10 patients she sees with such an injury has required surgery and that she, her manager and the neurosurgeon were all in agreement that I needed reviewed. It was sods law that during the time they were trying to contact me, my mobile phone was in the process of having the number exported from the previous provider and our house phone doesn’t accept anon calls.
28th April 2017 – I called my physio and she said that she felt it was serious enough to warrant the hand delivered letter and I therefore called the neurosurgeon who scheduled an appointment on the first available date he had.
15th May 2017 – My wife and I attended the appointment with the neurosurgeon. He said he agreed with his colleagues findings when I was admitted on 5th April and with his decision not to perform surgery, given that the neuro assessment was normal and that I was able to pass urine before being discharged. I explained that although I had passed urine, it was very difficult and I still have retention and no urinary sensation to this day. He did not seem concerned about this and reiterated that I definitely did not have cauda equine syndrome. My wife mentioned that the discharge paperwork from the first hospital stated my diagnosis as cauda equina compression with a significant disc prolapse at L4/L5 and a smaller prolapse at L5/S1 with urinary retention, for which I was catheterised. He laughed this off whilst saying that the previous hospital will have written this based on the findings from the radiographer’s report and they did not have the skill to make such a diagnosis. I mentioned that the Dr at the first hospital had spoken to a consultant neurologist in Edinburgh at it was he who had come to this conclusion and had requested I be transferred for immediate surgery – he remains confident I do not have cauda equina compression or syndrome. He states it is sciatica with urinary symptoms, which will normally resolve on it’s own or with physio therapy over time but on this occasion he would like to operate to remove part of the herniated disc at L4/L5 ‘just to be on the safe side. He informed me that a complication of the surgery was to develop cauda equina syndrome and I should be fully aware of the implications/symptoms of this, if that were to happen. I was assessed for surgery.
17th May 2017 – I have received a letter confirming I have been highlight for urgent spinal surgery to be completed on 25th May 2017.
I’m sorry about the length of this post but I wanted to provide the full picture. I am concerned that they are trying to pull the wool over my eyes and cover up a mistake. Having read up on spinal injuries, I feel that the injury should have been investigated and picked up much sooner than it has, and that this consultant is now doing everything he can, as quickly as he can to avoid finger pointing.
Please note that this is in no way about money/compensation. My wife works for the NHS (at the hospital where I attended A&E and was initially admitted) so suing them would not do us any good, nor would it sit well with my wife. The bigger concern is that procedure may not have been followed as it should have been and mistakes may have been made, which I would like to highlight if this were the case, to prevent reoccurrence.
Any advice, comments or similar stories are much appreciated.
Thanks in advance.