My Story So Far…

For those who don’t want to scroll back through all of the posts. This is a long post so grab a cuppa, a chocolate bar and make yourself comfortable.

When I was in my teens I discovered heavy metal music and fell in love! All it took was the first chord of Paranoid by Black Sabbath. My dad was into heavy metal when he was younger and he had the Black Sabbath Greatest Hits tape (yes, cassette tape!) and a Judas Priest tape by the stereo. My mum refused to let me listen to “that rubbish” which obviously made me want to listen to it more. My dad & kept ferrets and he has a radio/cassette player in the ferret shed. I took the Black Sabbath tape to the shed and dad let me listen to it. I quickly discovered Metallica, Machine Head, Limp Bizkit, Linking Park, Deftones etc. At 16/17 I was regularly going to Coventry’s best metal club, the Dog & Trumpet. I moshed to the music like there was no tomorrow. 20 years later was the tomorrow I would painfully discover. I also worked in old people’s homes, often lifting and holding residents at their dead weight due to lack of staff, equipment or both. I thought I knew better when I was warned about the repercussions of living such a lifestyle and working.

I had my first bout of Sciatica when I was approx. 21. I was sat watching TV in the living room on a Sunday evening when my cousin, Becky, arrived with Aunty Teresa and suggested a trip to the Nugget for a pint or 6. I jumped up from the sofa and the pain was excruciating. I went to the pub and sank 6 pints of lager in 2 hours, the pain refused to budge. The next day I went to see my GP who prescribed 10 days of Prednisolone and told me it may or may not go away! At this point I thought Sciatica was the diagnosis, I didn’t know it was a symptom. Luckily after a week it corrected itself 90% with the odd twing now-and-again.

One night I was at The Campbell in Coventry and after having a fair few drinks was up with some mates dancing on the bar. I misplaced my foot, fell off the bar and landed flat on my back. Everyone panicked but I just lay there laughing my head off! Apart from looking like I’d been dragged through a hedge backwards and a slight bump to the head I was fine. The sciatic pain stopped altogether after that fall!

Since then I always had a bad back on and off. Each time just becoming slightly worse. I took painkillers and ignored it. When I did see a GP they just told me to take painkillers and rest. At no point was I offered any kind of investigation into what was causing the back pain. Even when the GP acknowledged I’d been having problems for some years!

Fast forward 20 years, now I’m 37. In February this year my back started to play up again. Out came the painkillers and I just carried on. My lower left leg and foot went completely numb. I ignored it, thought it’s only sciatica, it’ll sort itself out in a few days. Over the next few weeks I found it increasingly painful to walk. Colleagues were commenting on how much pain I looked like I was in. I laughed it off as I waddled around. One day my back was giving me hell. The walk to my car after work was so painful I ended up crying in my car before driving home. At this point, in April, I decided to see my GP. It was clear that this time it was not going to go away. My GP gave me painkillers and referred me for a MRI advising that Sciatica is a symptom of something happening to my sciatic nerve and a MRI will help find out what was going on. He signed me off work because I was in so much pain. I had no idea how long the MRI appointment was going to take. I knew it takes 4 weeks for the results from the MRI to come through and could take up to 8 weeks to get the scan.

My brother was really worried about me so he booked and paid for an appointment for me on 20th of April at his Chiropractors. I went thinking they would look at my back and say “we can sort this in a couple of sessions”. Instead he did an hours worth of tests. He was surprised and clearly irritated that none of the doctors I had seen previously had done the basic checks (reflexes etc). He told me that the only treatment he could offer before my MRI was laser treatment to help ease the nerves because my back was so bad and due to the neurological effects. Not only is my left leg and foot partially numb but my foot is weak due to the impact of whatever is going on in my back is having on my nerves. He advised me to lay down as much as possible on my right side with a pillow between my knees, to use a freeze pack on my back for 20 minutes of every hour I’m awake and strongly advised me to have the MRI ASAP also advising he could refer me for a private MRI for £250! I told him I needed to think about it. During the appointment I laughed, joked and swore a little when it hurt! When I got back into my car I cried. I was hoping for good news not to be told that it’s worse than I thought it was. I now need to decide if I can wait for the NHS MRI and results or to go ahead with a much quicker private MRI.

On the 25th of April I chose the private MRI, my housemate who is also a best friend paid for it using money she had saved for a holiday we were going on with friends. I called the Chiropractors who advised I would get a call from the private clinic to arrange an appointment. The next day they called me and advised they had a cancellation for the 27th of April! I couldn’t believe how quick it was. I jumped at the chance.

I had my MRI at Heath Lodge Clinic. Di (my best friend/housemate) came with me for support. It was a beautiful building set in lovely gardens. The receptionist was really nice and helpful. The waiting room had bookshelves with hundreds of books, plenty of leather armchairs and a coffee/hot drink machine. There was also a coffee table with plenty of magazines to choose from. The receptionist had given me a heath & safety form to fill in and offered to collect it after seeing me hobbling around. I only had to wait about 5 minutes before being called through, during which I saw bunnies in the garden of the clinic. I love wildlife.

The radiologist and assistant were really friendly. We all praised the comfort of wearing Sketchers as all three of us had a pair on. The MRI only took 10-15 minutes. I had to lay on my back and despite taking painkillers (2x500mg Paracetamol, 2x50mg Tramadol & 2mg Diazepam) it was agony. The pain in my back and left leg was horrific and it did make me cry. I managed to stay perfectly still though because I wanted to get it done. Both were surprised when I asked for a tissue afterwards. They both praised me on how still I stayed and told me off for not making them aware so I could have a break. I explained that I just wanted to get it out of the way. I returned to the waiting room while they prepared the CD of images. I had a lovely chocomilk but was struggling to get comfortable sitting or standing. After about 10 minutes the CD was ready, we paid and left. The receptionist advised my chiropractor should receive the report in 5 working days!

I was so relieved to have gotten the MRI out of the way. I knew it was going to be painful and I also want to know what is going on in my back ASAP.

At this point I was on 2xNaproxen 500mg 2xper day, 2xParacetemol 500mg 4xper day, 2xTramadol 50mg 4xper day & Diazepam 2mg 3xper day.
I was still in a lot of pain.

On the 29th of April I got the MRI appointment letter from University Hospital Coventry & Warwickshire advising my NHS MRI was booked for 13th of May!
1) It took 5 weeks to get this letter!
2) I’d have had to wait another 2 weeks for the MRI!
3) I’d have had to wait a further 4 weeks for the results!!!
All while I was in agony! I was so glad I had my MRI privately. Got apt 2 days after referral & only a weeks wait for results.

On the 6th of May I had an appointment with the Chiropractor to discuss the results of the MRI. It was the news that I equally expected & dreaded. The L4/L5 disc bulge was significant enough for surgery to be the only option at that point. My Chiropractor advised of treatments but due to the severity he was reluctant to try them due to the risk of making it worse. I needed to take my copy of the report and MRI CD to my GP to get an urgent surgical referral. I was feeling a rollercoaster of emotions, glad to know what I was dealing with, upset with the severity and petrified of potential surgery.

I took my report to my GP who sent an urgent referral to see a neurosurgeon. I called the booking centre to see how long it could be and they said I should be given an appointment within 8 weeks and that the appointment will be within 18 weeks. I could’ve cried. On the 11th of May I got so excited because I had a letter from the hospital asking me to book an appointment with the General Neurosurgical – Neurosciences Department with the option of 3 hospitals: University Hospital Coventry & Warwickshire – 1.5 miles away, George Eliot Hospital – 8 miles away or Warwick Hospital – 12 miles away. I had the option to book online or by phone. I excitedly logged onto the website and entered the required info only to find out that none of the hospitals have any appointments available!!! I called the number on the letter and spoke to a lovely guy who advised none of the hospitals had released any blocks of appointments to be booked by this method! He was just as frustrated as me. He advised that he can send my details to the hospital of my choice and they will send me an appointment letter within 2 weeks.I opted for University Hospital Coventry & Warwickshire, not just because it is the closest but because I trust them more than the other 2 hospitals.
So the waiting game restarted.

On the 19th of May I got a letter from the hospital to advise I was on the waiting list for an appointment!!! I hoped the consultant that reviewed my referral would give me an appointment ASAP. More waiting…

Whilst waiting a bought a walking stick to not only help me walk with less pain but to also stop me hobbling like I’d got something shoved up my bum! I also got to thinking about my bad back. How over the last few years (or more) my back has gone through “phases” of being bad and then would be better again. Each time it would be slightly worse, I would take painkillers and just get on with my life. Maybe each time my disc was bulging a bit more until eventually it caused my current issues.

Even if I had tried to do something about it before I honestly don’t think my GP would’ve referred me for further investigation if I had tried to press them to. They would’ve continued to prescribe painkillers until it had settled again.

Do we always have to wait for things get so bad before we get them sorted? The NHS is so stretched that GPs will only refer cases that are really bad. Also GPs are charged for the referrals which doesn’t help, especially if they are penny-pinchers or financially stretched themselves.

I also suffer from chronic sinusitis and allergic rhinitis, which means I suffer from loads of sinus infections and am allergic to everything airborne. It wasn’t until I was having back-to-back infections, affecting the left side of my face mainly, that the GP sent me for a CT scan. He actually made me say that I was in constant pain before he would do anything!

I was told the results of the first scan showed that there was just a bit of fluid build up in my maxillary sinuses and everything else was ok. I saw a different GP about 3 infections later who looked at my first CT scan and then quickly sent me for another CT scan. Clearly the first GP had missed the actual problem. The second scan showed that I had a deviated septum blocking my left sinuses! One operation (Septoplasty) later I still have infections just not as often or as fierce. If the docs had sent me for a CT scan after the first couple of infections it may have saved me from a lot of suffering.

Maybe if I had pushed my GP to investigate my back or they had instigated an investigation sooner it could’ve been caught earlier, I wouldn’t be where I am now, in constant pain despite the painkillers. Struggling to sleep. Struggling to walk, sit and lay down. Getting pain so bad it makes me feel sick and makes me feel hot and sweaty. Looking at an operation to fix the problem because it has potentially gone passed the point of being treated by physiotherapy.

It took my brother paying for an appointment at a Chiropractors and my friend paying for a private MRI scan for me to find out what is wrong before mid-June! By which time I could’ve caused more/permanent damage as I have a habit of battling through and getting on with whatever I’m doing.

“What if’s” are the most annoying thoughts! What if I had spoken out? What if the GP had done their job better? What if the NHS wasn’t in crisis? What if I hadn’t been so stoic? What if I hadn’t handled my pain so well? What if I had complained more? At least I was on the road to getting some treatment, even though the traffic was/is slow.

On the 9th of May I called the hospital booking line, more out of boredom and impatience than anything else. The very nice gentleman I spoke to shocked me by advising that an appointment has been assigned to me. It’s for 10:20am on 31st of August 2017! I asked if there was a cancellations list I could join. He advised that they do not have a cancellations list but gave me the Neurosurgeon’s secretary’s phone number. I tried to call her but she’d already left for the day so I left her a voicemail message asking for a cancellation spot.

On the 10th of May the letter confirming my appointment arrived. It was then a case of waiting for a cancellation.

On the 15th of May I managed to speak to the Neurosurgeon’s secretary, she was lovely. Very helpful. I asked about being on a cancellations list and she said she would contact me when the next cancellation came up. She also advised that she’d look out for cancellations for the other consultants too.

On the 16th of May I went to see my GP about my pain meds as they were not working. She was very angry that the locum had only put me on 300mg of Gabapentin per day at a previous appointment. She was also unimpressed that I was taking Paracetamol as well, she said “you are way past Paracetamol, they are only sweets for you!” I advised that I no longer wanted the Diazepam as I didn’t feel it did anything for me. So she removed the Diazepam, Paracetamol and increased my Gabapentin to 900mg per day.

I also had a call from the consultants secretary asking if I could make weekend appointments. I told her I could, to get cancellations you need to be a flexible as possible. Then she asked if I could attend an appointment on Sunday at 9:20am! I was genuinely shocked. I nearly bit her hand off!! I can indeed I told her. Then she confirmed I’d be seeing the consultant at 9:20am on Sunday 18th of June! You could’ve knocked me over with a feather. I was so happy I cried. My original appointment was for 31st of August 2017. I was excited, a little nervous and over all relieved as I wanted the pain to be sorted ASAP.

On the 18th of May my housemate came with me to my appointment as although I was ok about it on the Friday & Saturday, on the morning of the appointment I was a little anxious. We arrived 10 minutes early, we’d barely sat down in the waiting room when I was called through.

I had downloaded a dictaphone app for my phone to record the appointment as I have them memory of a goldfish! I’d like to blame the painkillers but I’ve always been an “airhead”. I asked the consultant if I could record the appointment and his response was “go ahead dear”. He was lovely, very to the point but with a gentle manner. I instantly felt like I could trust him. There just seems to be something about him.

He had read the MRI report I’d emailed to his secretary. The key points he said during the appointment were:
“Nobody can give you a new back, nobody can give you a new disc and nobody can give you a new nerve.”
“We can trim the disc to take the pressure off the nerve. It’s a repair not a cure. It carries risks.”
“If the pain is getting better then don’t have the surgery, if it isn’t getting better or if it’s getting worse then think about having the surgery. Both having or not having the surgery carries the same risk of paralysis due to the pressure on your spinal cord.”
“If you are happy to proceed with surgery it will be a L4/L5 decompression surgery and trim the disc. Again it is a repair not cure. Your back will always be problematic. If the nerves are too damaged it will not relieve the pain.”

I opted for the surgery. My back is getting worse, I need some relief and it makes sense to try to take the pressure off the nerves. There is a chance surgery will help to relieve the pain. Not having the surgery will leave me in agony.

I am now on his list. I’m not sure how long it will be before my surgery. The sooner I get this done the better. My pre-op is booked for the 4th of July but this in no way indicates when my surgery will be. In the meantime I need to manage the pain with painkillers which is proving to be a struggle.

On an emotional level, I am both relieved and upset. I knew how bad it was but hearing it from a consultant makes it “real”. I’m relieved because I know what I’m facing longterm so now I can get my head down and get on with it.

I am extremely lucky to have three close friends who have had similar surgeries and am a member of several support groups on Facebook. Along with family & friends I have plenty of support. For that I will always be grateful.





2 thoughts on “My Story So Far…

  • Wow! I was touched by your story I just had to let you know that you are a really brave woman.
    Last year I had my baby and I was having a really bad back pain for few hours in the delivery room, I just couldn’t breathe…. I can’t even imagine how it’s to suffer for days, weeks…. and even months!!!

    You are a true Wonderwoman!
    Thank you for sharing your story

    Love from Paris

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