For the past 7 months I have been on a journey! And not one I was expecting!
Back in May, I started getting leg pain in my right CP leg. The pain then got worse & I struggled to walk. Every movement I made was excruciating. Literally the worst pain I ever had in my life.
I went up A&E & after 6 hours, an X-ray (no idea why they did this as an X-ray does not show up the discs that cause sciatica!) I was diagnosed with sciatica & just told to take over the counter pain killers. These did not even touch the pain at all!
After a few weeks of having pain, I was advised & signed off from teaching & was advised to get a private MRI. This is because unless your showing symptoms of cauda equina, the NHS will not give an MRI. I was finally prescribed the strongest Co-codamol you can get & was given baclofen to see if that helped loosen my leg muscles that went into protector mode around the nerve!
I was struggling to even get in & out of the car. Couldn’t stand up for long. I had complete brain fog & would just fall asleep at any point of the day!
I was told to still take Ibuprofen alongside the baclofen, then one day I couldn’t walk at all. Mum was away & a friend had to come over & help out! As I was talking to him, it dawned on me that both the Ibuprofen & baclofen were doing the same thing & stopped taking the Ibuprofen! After a few days I could walk again!
I had the MRI at the Cobalt clinic in Cheltenham! This was extremely painful as I couldn’t lie on my back & I had to lie on my back for it. I had a lovely radiographer also called Sam, (he was also very easy on the eye 😉) who after a few attempts, managed to get me into position & we were ready to go. The MRI is very noisy & I just closed my eyes, gritted my teeth & counted the beats in the bleeps to it was over!
I was on a family holiday the week I had the MRI, my 4 year old niece & 2 yr old nephew learnt a lot about auntie Sam’s bad back & were absolutely amazing with me. I hired a scooter so I could enjoy myself, despite my awful driving skills with it, my niece & nephew loved it. My nephew loved chasing me on it!
Whilst on holiday, the MRI results came back & I had a L5S1 disc bulge amongst others higher up in my lumbar spine! But the L5S1 disc bulge was the culprit for the pain.
As time went on, I was getting worse. I lost my ability to think, concentrate & would just sit there working staring at the screen wondering what should I be doing! Plus I didn’t come on for 7 weeks! So I knew my nervous system couldn’t cope!
At this point I was signed off the day job.
I saw a Doctor at my GP surgery who was absolutely brilliant, he referred me on to the NHS spinal team. I had to wait 8 days before I could contact them, if I had not heard anything from them. In which I didn’t! After 8 days, I rung up, was given physio number to call to book an appointment. I did so, 7 weeks’ time but I just took it.
After this & talking to mum, we discussed I couldn’t wait 7 weeks for a first urgent appointment, so booked an appointment with the spinal consultant at The Ridgeway hospital in Wroughton. I booked it for the following week!
In being honest, I cannot remember much from the first private appointment with Neil, that’s how much my somatic nervous system was over working & affecting me! The pain at this point had gone up & was unbearable!
I walked in & literally the first 5 minutes was about my Cerebral Palsy, he said it was in both legs (when we always been told just my right leg,) he unofficially diagnosed me with hip dysphasia & was going to get my GP to refer me to a hip consultant.
Then he got on to the back. All I can remember was my disc was pressing on my bladder, and my joke about his aim!! (At how his injection aim was, but yes those who know me, know there was some tongue & cheek in that comment) he had a very good sense of humour.
He booked me in for a nerve blocker 2 weeks after this appointment.
I’m not going to lie, I was absolutely peeing myself about the injection. I have had so many operations/ treatments & do not have a positive experience with treatments, which is common for those with CP. I spoke to a Zumba instructor friend in Gloucester who had been through the same & still is, she explained about it & how they do it which did help a tiny bit.
On the day of the injection, I was very nervous! I waited, I had to put a gown on, and waited to be called in.
When I went in, the X-ray bed was high with 3 steps up to it. The lovely Neil joked about how to get me up on to the bed, I joked throw me 🤣 but he was absolutely amazeballs and helped me. Made sure I didn’t fall off whilst turning & helped at all times, even when my arm got stuck under me!
I asked him not to be told what was going on - with my CP, if I know what’s happening my body tightens up, which makes it more painful!
He puts the injection in through a guided X-ray & it’s put in between the nerve & disc to reduce / block inflammation!
I sat & waited for mum to get me. I rested when I got home.
I didn’t have any instant results from it, but over time I did.
I then had my triage appointment on the NHS. Well, I was expecting to see a spinal consultant! You would think right! Nope I saw a specialist spinal physio. From the moment she called me in, she was stern & came across as very cold! She even spoke in a stern way. She kept asking me questions, then telling me to stop talking! Lucky, I took a copy of the MRI report as despite everything being sent across, she didn’t have anything to do with the MRI.
She looked at it and then asked why I was there If I been private. I told her as a disabled person, it was my right to be there & if I had waited for the NHS to do anything, I would get the sack from work! She then proceeded to ask about my job, which I had great pleasure in telling her! I’m not kidding you, she then got even more moody. I think she was expecting to fob off a disabled person, which happens a lot! She certainly was not expecting a disabled rehab personal trainer to brace her with quite a lot of knowledge!
She told me I wouldn’t have a nerve blocker on the NHS and she wasn’t going to put me forward to the spinal panel & I just needed physio. I responded with, it’s not your decision to make & it’s mine, so yes you will take me to panel.
She then did some tests but refused to help me up from the bed. And just put the back up right on my lower back! Which took me 4 days to recover from! She then just ended up by saying I’m off to the photocopier, see yourself out.
(Yes I have put a complaint in! )
I did hear back from the spinal panel & I’m on the waiting list for a discectomy. I rather be on it, than not. But it just shows, to stick up for yourself & demand what you want. If not, they will just walk over you.
I was still getting pain in my right leg & it was really bad when I was hormonal/ time of the month. I was a bit nervous bringing it up with Neil (my private consultant) as I’ve had poor experiences with talking about my cycle with male medical professionals, but he was again, brilliant & very knowledgeable about it. I knew roughly why but he explained why (which confirmed what i thought!). He booked me in for another nerve blocker injection.
This injection, I had a completely different experience. All because my nervous system was fighting it. Again Neil helped me & was joking with me & this time he had an idea to distract me from what he was doing. He forgot but that made it even funnier! But after getting dressed, I face planted the floor because my leg was so numb & heavy. I just couldn’t lift it. I had to wait for Neil to finish & check me over. He was expecting my body to react that way. Had someone escort me to the car. Once home & walking around, it got easier.
It is still working in me, I’m having physio. And slowly returning to work & getting my life back!
Having a spinal condition is a long, slow recovery. It’s a very lonely process & people cannot really understand unless they been through the pain themselves.
I’m unable to walk the distance i use too, I still have to navigate how long I can stand up for. I’m also having to put myself first, and rethinking everything about my future & am future proofing my career. There may be some big changes ahead, but don’t worry, I still be teaching as I been told I have too, to maintain my rehab & help my CP.
I am waiting for neuro rehab (physio) & I been referred to neurology.
Since my private consultant wrote to my GP, she has taken my CP more seriously & that as I age, it will change due to the impact of how my body moves.
I must thank my family & 4 of my very close friends for keeping me sane, taken me out, helped me walk etc they all seen a change in me & even now, I’m still getting quizzed by my 4 yr old niece!
But I also must thank my private consultant- Neil Orpen. Honestly, I seen god knows how many consultants in my life, but he’s been the best I seen. (I can see him loving this comment 🤣), he is very to the point - which I like. He is kind, caring & funny. He has a wicked sense of humour & ladies, easy on the eye! 😉☺️
If you have a spinal issue please go & see him. He literally is a fountain of knowledge on spinal conditions. And for me, he actually took my CP seriously & was appalled at the lack of medical care (including physio) I receive! He even had good knowledge & understanding of CP. Which is very rare & refreshing. He is fully private, but honestly, it’s worth it! (I have put his profile is in the link below)
Neil - a massive thank you, I cannot thank you enough! You are always welcome at any of my classes & I would love to see you in one, one day! Or I be more than welcome to give you some Personal Training sessions! 🤞🤞🤞
I am now undertaking my Level 4 lower back pain qualification, so I cannot only fully help my clients with lower back pain. But so I can help others with cerebral Palsy to try & limit what I been through as it honestly has been the worst thing I ever have experienced! And one day I hope I can connect & work with Neil, on a professional level. 🤞🤞
Mr Neil Orpen