Tuesday 14 August 2012

Hello Everyone! 

I guess if you are reading this you suspect or have been diagnosed with this condition - please read on!! I hope and would like to help and support others with your questions, queries, fears or rants about this condition. I am a sufferer who was heavily affected in 2009 and am still trying to cope and come to terms with many of the conditions symptoms and limitations. It would help me (and hopefully you) to talk, communicate with someone who can maybe help, understand or relate to what I /we are going through.

A Bit About Me :-)

My name is  Mary Anne Hussain, I live in Milton Keynes, Buckinghamshire, England and am a married 37year old Mum of 3 Children.

My blog is for Cauda Equina Syndrome enquires, contact, discussion of symptoms, limitations, expectations, daily living, coping with it and support. I hope it will help both other people and me to cope with this little known and unheard of to most people! condition that can sometimes devastate your once "normal" life.

Firstly - Its not all bad, and I know that sentence alone can sometimes make you scream with anger! rage! and answer "How the bloody hell would you know!!!?" I do - because its my life now too, Its just a bad day, a difficult day, tomorrow may.. and sometimes is.. easier, less painful, less emotional, more positive - and thats me saying that am I am still someone who now occasionally has to use a wheelchair - yet refuses to be labelled disabled! :-) now hopefully you have smiled today :-)

My Diagnosis

Well, I hope you have half an hour to read on! Its quite long winded and complicated! as most peoples stories I suppose are, this is my personal account of where and how this started.

In Feb 2009 I suffered an episode of back pain - I had many years earlier when I was a child been diagnosed with have a degenerative spine and discs, so I had previously suffered lots of bouts of pain - sometimes severe bed bound pain before, so I put it down to this.. just another episode, I visited my local GP to say I had hurt my back - and was prescribed painkillers and anti inflammatory painkillers, I went home rested and continued on with my life, I worked as a recruitment account manager and had to drive quite a bit - over the course of the month I really struggled to drive, sleep or do anything without extreme pain and discomfort even on the maximum doses of the painkillers, they weren't even touching the pain so I went back to my GP, I told my GP I can't even sleep through??!  - I woke every time my body tried to move and it was agony, my GP said "it was just a flare up of my "old condition" and I was prescribed additional pain relief, I again carried on - somehow...? - working and trying to do the everyday tasks that had become very difficult now and painful - getting in and out of my car was a horrendous task and sight! :-) but again I thought its just another episode and it will eventually go... 

A couple of months later I thought this can't be right?? The pain was still up there as a 9/10 at times and I was trying heat patches - lumbar supports, still on constant round the clock pain killers as well as adding in codeine and paracetomol I felt pretty much out of it alot! I re-visited my GP and said I think somethings really wrong - I had started to struggle I noticed to go to the toilet and I told my GP that it didn't feel quite right down there - there was a cold numb feeling patch at my back passage and my private parts felt a bit ...strange, I explained when I went to the toilet and wiping it feel odd.. I was assured again that nothing was wrong other than the back problem and its just a flare up but my GP would look into my history and an earlier suggestion some years previous into how surgery could make things better for me.

Again I "carried on" I continued to work and drive best I could with colleagues agreeing something must not be right?? who has to live like that!? literally crawling to the photocopier!? rather than try walking I would wheel myself as close to the loo, or kitchen, my colleagues were also sticking heated lumber patches to my back and getting me heated cushions from the microwave to try and help!

I returned to my GP in tears demanding at this point to be referred as I knew that something had changed, I said to my GP "I'm really worried something else is wrong?" my GP agreed and I was able to pick a hospital - I said whatever is quickest! But as a non urgent referral I was given a date some 6/8 weeks away.. I was resigned to the stabbing back and bum pain that was by now radiating down my legs and one of my legs in particular was struggling to lift off the ground, I felt like I was dragging it a bit, I went back to the GP practise a couple more times before the hospital appointment came through but again nothing was done other than examination and advice I had already tried.

In May I was asked to go to Dubai with work, I had been working on an account for a market leader out there and I was asked to represent the company in their overseas seminar, I was delighted but slightly concerned on how I might cope as I was still struggling so much, but I decided to go excited to visit the much talked about World of Dubai. It was a huge mistake!! I was in agony from beginning to end, I couldn't relax, couldn't enjoy the hotel or facilities, I tried to get on a sun bed one day and it was horrendous, the staff helped me off! :-) it was embarrassing but I have to look back and laugh otherwise you would just cry! My Boss encouraged me to seek some help as I was complaining alot about one of my legs in particular, the lovely hotel arranged a car to take me to main Dubai for more pain relief, I went into the main centre of Dubai and to a chemist - they have consultations about medicine and the chemist asked me why I was asking for "REALLY STRONG - STRONGEST YOU HAVE!! painkillers?? I explained and said I had a bad back and that I thought there was something wrong with my right leg - she looked at it and said it seems a strange colour, blueish, she recommended I see my GP as soon as I got back home, which I did - again ... frustratingly, I got same response, just wait to see the hospital its a few weeks to your appointment.

God!!! Are you still reading!? I did say it was long winded!??? :-) I need a break from writing it! next instalment after lunch!

I'm BACK - ARE YOU!? I hope so :-)

Anyway May June and July dragged on, I attended the GP's again saying my private bits were not feeling right and also since Dubai I have started to suffer from sudden and uncontrollable bowel movements!!??? this alarmed me but I had no inkling that it was linked to my back pain at all? I was again assured by the GP that it was probably a stomach bug I had picked up in DUBAI and although my back was bad she didn't think there was anything untoward happening... I didn't agree, but assured by my doc I went home and convinced myself it was going to right itself in time, how wrong was I? I had started to notice my bladder was leaking slowly alot of the time and I was often wet - I started to wear pads and again mentioned this to the doctor but assured that having 3 children women often become susceptible to a weak bladder, I said my bowels are still haywire? I was lucky - sometimes unlucky! making it to a toilet in time?? same response - tummy bug? she stated some can last upto a month or more... I doubted this...? but amy conscience noted!! this women has studied medicine and is a professional, (at worse I was worried of bowel cancer - I have never heard or even considered Cuada Equina Syndrome) so reluctantly agreed with her again to await a scan with the OXFORD NUFFIELD CENTRE, this went on whilst pins and needles invaded my right leg nearly all of the time and my right left slowly started to drag - I still sought advice but at this point felt like I was waisting the doctors time... everytime I was assured it was "normal for my condition"

EVENTUALLY A SCAN WAS PERFORMED THAT REVEALED A LARGE CENTRAL DISC CRUSHING MY CAUDA EQUINA COMPLETELY! But my doctor (who hadn't been advised of the result) assured me on yet another visit in NOVEMBER 09 AFTER! I had had my scan and complaining of all the similar progressively worse symptoms "Mrs Hussain NOTHING SINISTER IS GOING ON - THE HOSPITAL WOULD HAVE CONTACTED ME IF ANYTHING WERE WRONG"  Lets await the scan results...

On DECEMBER 01 2009 I found my phone that I had mislayed 2 weeks previously, I hadn't been working for a while due to the extend of my pain/lack of sleep/numb leg and feet and leaking bladder and bowel problem, I picked up 3 messages all from NUFFIELD HOSPITAL saying that I needed to contact them ASAP - they were all left the week after the scan had taken place.

I telephoned and was told I had a large disc protrusion that was crushing my cauda equina (spinal cord nerve endings) and I needed immediate surgery and to come straight away.

I was advised before surgery by the Consultant that given the length of time I had the bladder bowel and leg damage I was highly unlikely to benefit from a recovery - but they would need to operate to get the disc off so as not to cause any further damage as I could go completely numb from the waist down. I was told I had footdrop which again was unlikely to repair itself - and meant that I could no longer legally drive???


I never recovered, its been 3 years and I have still not been able to return to work, my husband had to give up his job to help look after me and our 3 children. I have had some terrible months where I have been unable to walk at all and have had to use a wheelchair, I have also had to get used to my husband having to help me on the toilet and with personal hygiene which I have found crushing in terms of femininity and personally for our marriage and love life - but I have no choice when I can hardly move and my bladder or bowel or both leak.. My husband is WONDERFUL and has been the source of my sanity at times when I have actually thought about giving up!


Thanks for Reading this, lots of love

Mary x