Just a quick message to say hello you all on this great website. I am a very newly diagnosed CES patient, which I have gone through a very emotional journey to get to where I am now in my life. And, as I really want to help as many people as possible, to prevent anyone thinking that they are the only one who is suffering from this condition. I have set up a registered charity for CES too. This is to try and provide as much reliable information, so that people's journey's can be such a smoother ride than mine. And also, which I think is equally important is to increase awareness to CES condition.
My story starts back in 1995, when I experienced two prolapsed discs in the lumbar L4 L5 region. I was only 22 years old, a fully qualified Hairdressing tutor, when my world was turned upside down. Only a year after I got married and I was faced with a surgeon asking me if I would sign a yellow form to allow them to operate on me, with only a 50/50 chance that I would walk again. After seeing the expression on my hubby's face I knew that I had to fight to get better without surgery. So I opted for the bed rest. Cutting a long story short, in hospital, whilst drugged out of my tree, I had three months flat in bed, then put on tilt bed, hydrotherapy, traction, tens, physiotherapy, acupuncture, the back class, till I got up onto crutches, then walking sticks, until I managed to walk un aided. But after doing all this over a course of a year, I was told not to go back to my hairdressing. So I retained...and back to college again.
But over the years I have had little time where I haven't had any back pain. Which did get me down inside very much so. But as I was a workaholic, I just used to manage my pain with drugs and fighting through it. I thought I'd got it managed until March 2010. I just got sudden sharp pains around my pelvic area and again down my right leg. I went to my GP where they gave me stronger than my normal tablets. And they did say they would ask if I could go for a MRI scan as they believed it was my back problem again. But the NHS turned me down as they didn't think I required it. Anyway at this point I did just not want to hear that, and hoped it would go away on its own. But how wrong was I. July 2010 whilst I was at work as a beauty laser therapist, I experienced that seriously sickly pain in my lumbar area, my legs were shaking and I felt I was going to collapse if I didn't lie down. I didn't know how I got home that Saturday afternoon. All weekend I was in bed getting worse with pain. By the Monday morning 1st thing when I saw my GP, my right lower leg, foot and half of my saddle region was numb. I was admitted that morning. I had the same prolapsed discs as before. How deep did my heart sink then.
The next three months to me, well most of it I have lost my memory. And what I do remember is what has come back due to someone saying something which had triggered something in my memory. But, put it one way it was a very horrible, traumatic experience which I would not wish on anybody. Between July 28th to Sept 21st 2010 I had been in and out of hospital four times. The medical staff treated me appallingly. I suffered the experience of nurses taking out and putting catheters straight back in so many times I lost count. I was spoken to as if all my problems were in my head. I was even asked why I didn't want to go home. Not one person from the hospital could tell me what the problem was. By December 2010 I went back to hospital because I was retaining 2litres plus of fluid and the suggestion which was made to me was that my problems were all in my head once again. "Your back is fixed, so why don't you want to go home". Well by Feb2011, when I was at my lowest point with a major bladder infection, I was sent back into the same hospital. I was in a month and got no further to knowing what's wrong with me. The only good thing which happened that time was when my surgeon found out I was back in hospital due to a late 6 week follow up appointment which was 17weeks late. When I saw my surgeon, he did write to the Spinal injuries unit at Sheffield General Hospital. After I waited two months, I received that golden letter. That letter from Sheffield Hospital was my ticket out of a very unsupportive, unprofessional hospital. And for legal reasons I am not disclosing the Hospital trust due to me pursuing a legal case against them.
Everything changed at my first appointment at the Sheffield hospital I met a fantastic specialist nurse there, which was so wonderful with me. It's amazing that there are still some really excellent professionals in the NHS which helps build up your faith back in the hospitals. Since I have found out that I suffer from Cauda Equina Syndrome, I have come to terms with my condition and life so much better now that I have been given all the in's and out's of my quite tricky condition. I want to make the most of what I have. I have just recently had another spinal root block with a steroid injection. It has been five days now and still very painful. I just hope this works and I have some relief from pain. That would be lovely. I catheterise my bladder and bowels daily and have no problems at all now, but I still have the loss of sensation in my right leg and foot though. It has been great to meet the specialist nurse that cares and listens, my life has been so much better now, I can go out now without worrying. I can't thank Sheffield hospitals caring staff enough, and I have sent the Sheffield Northern General a letter expressing my thanks for their professional caring staff.
When I first got diagnosed with CES, I did the usual checking up on the internet and trying to read as much information about what 'CES' meant. Which I and so many other people apart from CES suffers, had not even heard of this condition before. I found along my journey that not many professional people knew of this condition either, and also there was not that much information out there and to be true. Since coming to terms with being a CES suffer, I am now explaining to people what it is and how it has an impact on your life. I have really wanted to help as many people as much as I can, to make their journey an easier ride. The charity is called; Cauda Equina Syndrome UK Charity. Post edited to remove URL. Solicitation is never permitted at Spine-Health
Well that's a very shorten version of my life with back problems and CES. I'll look forward to chat to you later.
Cauda Equina Syndrome UK Charity
Tel: 01509 266536
Registered Charity Number 1147603 for England/Wales