Published on: 01 Oct, 2019 - Read Time: 5 minutes Minutes
In Your Own Words: Lyn’s Story
I have been living with Cauda Equina now for eleven years. In my 30’s I suffered from back pain which continued to get worst with each episode. I went to my GP but was advised that it was very difficult to diagnose people with back problems. I was told to go and purchase a book called ‘How to Treat Your Back’ and to do the exercises. I left the surgery feeling very small and almost as if I was making it up. I went straight to the shop and bought the book. A few months later I was on holiday in the USA and had one of my worst back episodes. I went to ER in Carmel, California and was given pain killers and advised to get home asap. I managed the flight home with wheelchair assistance all the way through. Back in the UK at Emergency they fitted me with a catheter because there was no bladder control at that time. I had an MRI and was moved to specialist hospital (Southern General – now Queen Elizabeth) in Glasgow immediately for surgery. I was advised that I had already ruptured a disc and the damage was already done. All they could do was go in and clean up. I was told that no bladder and bowel control looked permanent. It was the Nurse pulling the curtain around the bed to tell me this and that the bags can be discretely delivered to home in an ‘unmarked van’. The thought of having a bag attached to my leg was mental cruelty. I was only 40.
Once home I was under the care of a district nurse who fitted me with a valve for the bladder as I couldn’t deal with the bags / tubes. The nurse came a further three visits and then I was left to get on with it. Thankfully I stayed with my mother who was such a god send. I went to physio to try and strengthen the left leg which was very weak. No feeling back of thigh, backside, and foot. It took at least six months to gain my balance which even today can be shaky at the best of times.
In 2008 there was no support and it seemed nobody heard of Cauda Equina. Because it is an unseen disability (I have a limp with my left leg when I walk) it was so hard to reach out to people. My GP seemed more interested and paid more attention after the event but there was no initial follow up, unless I hadn’t instigated the appointments. The only support group I could find was in the USA on yahoo groups but I felt myself becoming more depressed reading and hearing their daily stories rather than support and looking for a way forward.
I was advised that the full extent of damage would only be known in two years. So I waited the two years and as there was no improvement in the bladder or bowel area (I was leaking and wearing tena pants). I wanted to know my options. My GP and I were very familiar with each other by now. I severed three of the five sciatic nerves. I underwent at least three different specialists and instead of my file being passed on I had to undergo the humiliation of examinations for each one – standing abreast over a mat waiting for bowel or bladder movement. Finally I was told that I could have an operation to stitch up my internal area but would have to self catheterize and it would be permanent. Once I was shown the catheter I felt rather foolish because it seemed such a small and easy thing to use…I just wish I’d been introduced to it much earlier. I use the semi-compact which is the size of pen and very discrete to carry around. It took a while to adjust to using it but I think nothing of it today. My issue with the bowel is very different. I have to use the bag, pump and tube to flush out every few days. The only down side with the catheter is that I am prone to infections and on average have three to four per year.
The nerves down my left leg and foot continue to repair and I can have long durations where the nerves are hitting a dead end and determined to break through. These episodes can last for days and have my leg and body in spasms – its like sharp shooting sensations down my leg. My only relief is the pain killers which seem to knock me out and I sleep it through. But that is a worry in itself because I have to be careful of how many tablets to take in total not going over the daily recommended amount.
It seemed the whole new life I had was hard as I lost a career which I loved and relationships are hard to form when you try to explain all the issues that come with CES. Intimacy is not easy as there is no feeling. It is the whole mental process of CES which personally I find exhausting. I am a positive person but there are moments….. I take Duloxotine for the depression and bladder control which does work as I will certainly know about it if I forget and miss a tablet for a day.
I live with this every day now and it is not stubborn in coming forward to remind me. I had a bad experience last year when I woke up one morning with puss on my sheets. I thought I’d had an accident during the night but when I checked the back of my left thigh there was a huge opening which frightened the life out of me. I was taken to emergency and in hospital again for ten days. The cut was opened further by a surgeon who advised me that they had scraped away fifty-four internal blisters. It was Cellulitis UTI. The only thing that could be deduced was that I sat down on a public toilet and with a small cut on my leg urine had got into the cut and infection followed. What was worrying was that the opening looked like it had been there for months – I never noticed it because it’s an area I can’t feel. I did receive excellent medical attention when I was discharged home as I advised that I lived alone and there was no-one to help with the wound dressings. District Nurses had to come twice a day for three months to change the wound. Occupational Therapists visited my home and I was equipped with everything I could think of to assist and make my days easier. I only wish I had had the same attention ten years previously and my CES journey would never have felt so long and lonely.
In reflection I only wish I had been sent for an MRI when I first complained and it could have been detected instead of being advised to go and by a book!
I feel I am in a good place now, and accept my condition. I believe that was half my battle. I am more than open to helping, talking to others and supporting this group in any way I can. For me, the support was not there so I know how important it is. I see and would thoroughly recommend a counsellor as even just talking about it helps. I still get very emotional when I talk about my CES.