My CES story began in 2006 when I started having a strange weakness in my left leg. It was causing me significant pain but only when walking. I thought I'd pulled a muscle or something. So I ignored it for a few weeks. I thought it would settle down if I rested but several weeks later it was still happening. So I made an appointment with my GP. He was very dismissive and said that there wasn't anything wrong with my leg and I should try losing some weight. He stated that all I needed to do was to exercise more!
So that’s what I did. I pushed through the pain and carried on as normal but it did not improve. So I returned to my GP again. He offered no help or explanation for my leg pain. I continued to go back to my doctor several times over a period of three to four months. As it steadily became worse. I was also becoming angry that no one was listening to me. Feeling that there was no point seeing my doctor again. I just carried on suffering at home.
Eventually reaching the point of desperation and returning yet again to my doctor. It had now been almost 18months and it was not improving despite me losing weight. So taking my partner with me for support. I went back to see my GP again. Where I asked for help and demanded to get my leg checked out properly. My GP finally agreed to send me for an x-ray. Which of course showed absolutely nothing wrong. Apart for some minor wear and tear in my knee joint. Nothing that would have explained the weakness and pain I had in my leg. Returning to my Doctor for the result only to be told nothing was wrong. Left me in tears feeling utterly deflated. His only real help was to send me to see a physiotherapist for treatment to strengthen the tendons and muscles in my knee.
The pain became much more intense and was now frequent. Not just when walking. After about a month of treatment with a physio. I started to get a constant low back pain like someone pushing into the bottom of my spine really hard and had pain and numbness running down my legs and feet. I mentioned the change to my physio. Who said that he believed my leg issue was actually a red herring and that he thought that I had something called sciatica caused by a bulging disc in my spine pinching on the nerves.
So I asked him to put it in writing so that I could take it to my GP. Feeling like I finally had an answer for my problem. I visited my GP with the written note just a few days later. I explained my new symptoms but his exact words were" it will go on its own within a few months" and it was nothing to worry about it.
I visited my GP constantly over a period totalling more than 18months. Each time being told it would go on its own. By this time I was also taking large doses of pain killers some of which were borrowed from a friend who was taking tramadol.
At this point I wasn't able to lay down, sit or to stand for anything more than a couple of minutes at a time the pain was so unbearable. Making sleeping impossible. As I constantly had to change position. Only people who've had sciatica will know what I mean. It really is the worst thing you can imagine. Another sufferer once said to me that she would rather give birth repeatedly everyday than ever have to go through it again. I would agree!!
I became increasingly desperate and also angry. Because no one was taking me seriously. On my next visit to my GP I actually argued with him. Screaming that he refer me to hospital only for him to say "they will only tell you what I have already said". To which my reply was a very angry "I don’t care" (including some rather colourful swear words)
I got an appointment to attend a lumbar spine clinic about 5wks later. The specialist did a full thorough examination. Striping to my underwear was embarrassing but if it meant I was to finally get some answers so be it.
That was the first time ANYONE had even looked at my back. Within minutes the consultant said I think you have a large disc bulge. He said that he would send me for an MRI scan as soon as possible. This would confirm the diagnoses and he would send an appointment for me to come back in to discuss my options afterwards.
The hospital rang me within just a few days. Having had a cancellation. Well I didn't need asking twice. After having the scan. Which was incredibly painful due to having to lay still for so long. Four nurses came in to help me sit up. They offered to help me put my shoes back on. Which I thought was a bit strange. I felt that they were acting a bit odd around me.
As I walked back to the changing room one of the nurses asked me how long I had been suffering for. I chatted with her for a while explaining what had happened up to that point. To which she said "I shouldn't really tell you this but it's definitely your back and you'll probably hear from the consultant fairly soon."
Feeling happy that they believed me and I now would have proof something was wrong. I went home to wait for the results to come back. Over the following weekend the pain became much much worse and I just reached rock bottom.
I had constant excruciating pain, pins and needles in my thighs and legs, and had not had a bowel movement in at least 10 days. Lack of sleep and shear desperation left me feeling suicidal. So at 3am I called the on call doctor for help because I just couldn't go on any longer.
An on call doctor visited me at home and gave me a shot of morphine. He told me to contact my GP first thing on the Monday morning.
I went for a bath that evening as it was the only thing that was helping. As I lifted my foot up to climb into the bath. I felt a whoosh like sensation kinda like a big puff of air being blown into my back and then really sharp pain that took my breath away.
At the time I didn't think too much of it as had been in so much pain anyway. That night I slept well for the first time in months.
The next morning I woke turned to sit on the edge of the bed and quickly realised that I couldn't feel anything from my waist down. I didn't feel the usual need to rush straight to the toilet to pee.
I rang my GP surgery explaining to the receptionist the new symptoms but she said that there was nothing that they could do. As my MRI results weren't back yet. So feeling seriously scared and panicking. I rang the only person who'd actually helped me, my physiotherapist. I explained what had happened overnight and he told me to go straight to hospital Accident & Emergency department right away.
I shouted out of my window to my next door neighbour, who kindly offered to take me to hospital. Arriving at accident and emergency department I was told to go to the waiting area. We waited about an hour and a half before being seen.
A consultant examined me then sent me straight in for another MRI scan. Arriving back in the cubical a nurse approached with a theatre gown and I knew then that something really was wrong. The on duty consultant did some checks including a rectal examination and tests on my legs and feet. Then a consultant neurologist came to speak to me and explained that my L4 L5 disc had shattered into my spinal cord. The next couple of hours passed in a blur and I don't really remember it much.
I was sent down to the operating theatre for an emergency decompression of the spine. Within about 4/5 hours of arriving at the A&E department.
I only found out some time later that if I had not had the surgery within 24 hrs of the disc shattering. I would have been left with permanent damage to everything below my waist including any feeling, or bowel/bladder function & and the use of my lower limbs.
To say that I'm angry would be a huge underestimation. Especially when it comes to the way my GP treated me. He could have prevented me from getting CES. If only he had recognised my red flag symptoms.
However I also know that nothing can change what’s happened. Before this I was an active busy mum of two teenage boys. I had split up with their father after 19yrs together a few years before and I was finally getting my life back on track.
I had met a great man and was planning my wedding.
My life has been turned upside down because my doctor did not pick up on my early red flag symptoms. Following surgery I had no feeling in my legs or saddle area and was fitted with a catheter.
The surgeon came to see me the following day and told me that I had received a serious spinal cord injury and that I may never walk again. He told me that recovery would be slow because the nerves regrow/repair very slowly at around 1mm a month. I would need a wheelchair and would need help at home.
A few weeks later the hospital asked me if I wanted to go to a rehab centre for specialist care or if I wanted to remain in hospital for treatment. By now I had shut down both mentally and physically. I'd given up, had lost all hope and I am ashamed to say wanted to die.
My new partner of just 6months came to visit me often. He tried his best to cheer me up and held my hand. But nothing changed how I felt. After a few more weeks I was allowed to go home. But only if my home was passed as safe by an occupational therapist. My partner and sons moved my bedroom from upstairs to downstairs and my lounge room became my bedroom. For several weeks I lived in that one room. Only able to leave it in a wheelchair. In constant pain and feeling like my life wasn't worth living anymore. I slowly started to get some feeling back in my right leg and foot which gave me hope. Then my right foot toes began to come back to life. All except for the outer three toes and under my foot which remain numb and unable to move. The biggest issue was bladder and bowel control. Any bending sneezing coughing etc. meant flooding or worse.
My left foot and leg which was pinched for the longest have never returned and remains paralyzed. I also have numbness in the saddle area and remain in constant pain. For almost 2 yrs I used a wheelchair. Then began rehab and using crutches with the help of leg callipers and various AFOS.
I've had 5 years to get my head around what’s happened and in many ways it's only now that I finally feel able to cope with it. It's been a very long slow and often difficult journey. Mentally as much as physically. I've wanted to end my life on many occasions and nearly succeeded twice. I sank into a deep dark depression. Which left me bursting into tears if anyone so much as asked me what had happened. I could not cope with seeing any doctors anymore. I had no trust in them at all. My partner had to leave his job and flat to move in with me to become my full time carer.
Many times in those first few years I found myself crying on the bathroom floor.
I sometimes wonder how anyone could stand to have been around me during those early days. But I have a wonderful fiancé, great friends and a supportive family. They got me through those dark days. My wedding was cancelled and remains so. CES has completely taken over my life now. Every day is different. There are days when I feel like I can take on CES and kick its butt. . . And then there are days when I get fed up with the constant pain. Day when I can't even get out of bed. Days when I get angry that this has happened to me. But I guess that’s natural... CES is life changing. Everything changes and life is dominated by medications and disability.
I know that my journey with CES is far from over and probably never will be.
I still face daily challenges as I battle to get my life back on track. I have permanent damage to my left leg. Which has needed further surgery. Including a very painful four incision tendon graft because the effects of the nerve damage meant that I developed foot drop and several other issues. All related to the injury.
I also had to leave my home of 15yrs and move into a wheelchair adapted bungalow. Which meant leaving behind my old friends and neighbours. Which again left me feeling that my life was completely ruined. I am still taking numerous medications to cope with the symptoms, pain and damage that I have received. Knowing that this could and should have been prevented only makes me more angry. I struggle to trust my new doctor and all health professionals I come into contact with and have developed PTS. I get very nervous agitated and tearful at every appointment. Despite moving into a new area and having a new doctors’ practice. I still cannot cope with seeing them.
My new doctor is kind and understanding but I just cannot cope with going into see her. So I rarely do. . . even when I've have other health issues I can’t face going into the clinic. So we talk on the telephone and I only go in to see her if I have absolutely no other choice. Finding the right medication to keep my pain at a manageable level has been vital in helping me cope day to day. The worry is that sooner or later I will become immune to these pills and will need to find something else. For now that only need to be increased as they become less effective but that can only go so far. After that I don't know what I will do. I know without these medications I won't cope. It's difficult for others to understand the effects of constant pain. Unless they have experienced what I have.
Having a supportive ear to listen to all the worries I can't always voice to those around me also makes a huge difference. I was lucky and found some great support groups online via Facebook. They have helped me hugely. The members understand me and what I go through.
Don’t bottle up how you feel like I did. It almost destroyed me and my relationships with the people who I love the most. If you’re in this situation please talk to someone! No matter how badly you feel ...please Do it!!! We are all in the same boat, most of us have been in your shoes. So we understand how you feel more than anyone.
It's not easy to live with CES but you can do it. I'm now registered disabled and along with others. I fight to help raise awareness of CES. I try to channel my anger into helping others. Of course there are still days when I am sick of this life.
One doctor’s mistake has left me and my family with lifelong changes. Because CES effects the whole family not just me. All my plans and hopes for the future have gone. Right now just getting through life one day at a time is enough to cope with.