My Neurological Fight
I’m sure I’ll eventually use my blog to do rants about my various illnesses so I thought it would make sense to write a couple of pieces that briefly tell the different stories of what I’ve been through since I was 16! I’m not great at remembering dates but I’ll try to make it as accurate as possible.
At the end of November 2012 I started to experience, what seemed like, growing pains in my thighs – totally normal, right? I was 16 at the time so growing pains were to be expected. I continued to have these pains in my thighs for a few weeks & then, during the first week of December, my knees started to feel weak & stiff. One of the tutors at my college thought that it could be the start of premature arthritis; but hey, I was 16! It couldn’t be that. Then one morning (possibly the 5th of December 2012) I woke up to incredibly weak legs & not much feeling in them. This progressed to the point where I could barely stand & I was starting to get pains in my back as well. This continued for a few days, until we went to my GP – with me using borrowed crutches to keep me upright. My GP suggested that it was a combination of growing pains & possibly a pulled muscle in my back – he said to try to not rely on the crutches too much & I should go back to normal in a couple of weeks. Which I pretty much did – I spent my 17th birthday, December 13th, at the hairdressers having my hair done & then safely tucked up in bed… I was still in pain but we weren’t really worried – doctors knew best, right?
I went back to college on the first day of term after the Christmas holidays – I was still using crutches & was still in pain but I did seem to be getting better. I got home that evening to an empty house, went upstairs to my bedroom, sat on my bed & bent down to undo my shoe laces… that would be the last time I did anything resembling normal for months.
As I bent down my back made an awful cracking noise & I was stuck. I managed to, painfully, maneuver myself so I was lying, slightly curled up, on my bed – I anxiously waited for my mum to get home. When my mum got home she finished taking my shoes off for me, helped me move (again, painfully) into a more comfortable position & called the emergency doctor. The doctor came out & thought that maybe it was just a really badly pulled muscle in my back & prescribed me with codeine.
As the weeks went on I remained stuck in bed, I couldn’t walk & lost control over my bladder & bowels – not fun for a newly 17 year old. We called out multiple emergency doctors & I had nurses come to the house to check me over, but no one could work out why I suddenly couldn’t walk. I had two MRI scans done, but when the results came back I was told they were clear… I later found out that this wasn’t true.
For four months my mum & boyfriend at the time (God bless him) helped me to learn to walk again, & I slowly managed to retrain my bladder & bowels (to be honest, that’s what I was more worried about). For four months I struggled to get to the toilet before soiling myself. For four months I couldn’t bathe myself. For four months I couldn’t get out of bed to brush my teeth. For four months I couldn’t make myself a drink or something to eat. For four months I didn’t see the downstairs of my house. For four months I was isolated & incredibly depressed. For four months I spent every day terrified.
Those four months are a bit of a blur for me, I think I’ve blocked a lot of it out, but I spent my time watching TV (Scrubs & The Real Housewives of Atlanta became my life) & on my computer, attempting to do college work, on Tumblr or trying to work out what was wrong with me. I was put on more medication & by the end of the four months I was regularly taking diazepam, naproxen, codeine & something-else-that-I-can’t-remember-the-name-of.
At the end of April I returned to college, this time with a walking stick. People stared at me & asked me questions I didn’t have the answers to. I lost friends because they thought I was faking it; either because I couldn’t say why it had happened to me or because they didn’t think I could be unable to walk if I wasn’t in hospital. Returning to college was a traumatic experience, but not just because of the staring, my tutor & the head of our department didn’t want me to come back because they felt I had fallen behind too much. The head of the department actually told me that there was no point in me bothering with education if I was just going to get sick again. The only reason they didn’t kick me off of the course was because I just kept turning up every day; I caught up on the work & kept my head down (apart from when I had a couple of arguments with members of staff). I finished the year with most my work finished on time – I knew I’d have to do the remaining work when I came back in for my second year in September.
By around June/July I was carrying my walkingstick folded up in my bag but wasn’t using it everyday – I was still incredibly weak & was very restricted in what I could do but I was sort of getting back to normal. The one thing that never changed was the pain I was in though – my back continued to hurt, my legs ached all the time & my shoulders burned if I dare to sit down or stand up for too long. At some point, within the previous 6 months, I had been told my MRI results were clear & that nothing was wrong with my spine, but one day during either August or September I spoke to a receptionist at my GP surgery on the phone & she told me I had a hole in my spine – & then she hung up.
I demanded that I be sent to see a neurologist & probably around 6 weeks later I did see one; I was told nothing was wrong with my MRI images (despite what the receptionist had said to me) & I was treated like I had made the whole thing up. The doctor said that if anything was wrong with me, that it would be regional pain syndrome, but he didn’t even believe I had that. I think I was diagnosed with hyperreflexia at that appointment as well, but that wasn’t seen as a big deal.
For the next (approximately) 8 months I continued to take medication; I was now taking tramadol instead of codeine because the codeine wasn’t working & I was taken off of diazepam due to it’s addictiveness, & tried to be as much of a normal 17/18 year old as I could be. I got into another relationship, went on nights out every now & again (it took days for me to recover), & worked my butt off at college. Doctors still didn’t think anything real was wrong with me, & I dealt with very rude & condescending doctors asking me if I had a history of drug abuse & if me & my mum claimed benefits (my mum worked full time & I was a student), but apart from that things did seem to be on the up.
During the first week of May 2014 I collapsed at college & was sent to A&E. My pain was even worse than normal that day & my legs became very weak & heavy. I was so scared that I was going to end up bedbound again, & so was my mum. I prepared myself to be told nothing was wrong & to be sent home with more medication that only half worked. I never expected what actually happened…
After a couple of hours I was called through to the A&E ward & was assigned a totally random doctor. He asked me all the questions I knew were coming “Have you ever had a problem with drugs?“, “Has anyone in your family ever had a problem with drugs?“, “How do you spend your free time?” & “Do your family claim any benefits?“. The doctor seemed to like me & believe me, so he went on to examine me – a process I now knew off by heart. He asked me if I’d had any medical scans done & I told him about the two MRIs I had had – he went off to look at them. Twenty minutes later he returned & said words I never thought I’d hear;
“I think I know what’s wrong with you.”
I genuinely could have cried at that moment. He told me he thought I had syringomyelia, something I had never heard of (nor have many doctors), that he was going to admit me & request I had a full body MRI scan done. I was in A&E for 23 and a half hours, as neither the orthopaedic or neurology wards wanted to take me, as neither of them knew what to do with someone who might have syringomyelia – I ended up on a ward full of lovely, little old ladies who had been brought to the hospital because they’d had a fall or hurt themselves in some way that wasn’t really serious, but was enough that they needed supervision whilst they healed. Despite being on a random ward the nurses were suddenly treating me like I was actually sick – I was being helped to the toilet & was shown some small exercises I could do to help strengthen my legs.
After my MRI three doctors came to see me & confirmed that I had syringomyelia, as well as cervical & lumbar lordosis & very slight scoliosis. All of this was put on my discharge letter – I finally knew what was wrong & I was no longer being called a liar!
Syringomyelia is a degenerative neurological disease that often comes hand-in-hand with a condition called Chiari Malformation (something which I don’t have). My syringomyelia is idiopathic as they don’t know the cause, but it’s been guessed that I was probably born with it. Doctors have speculated that I may have been putting my body under more stress than normal when I lost the use of my legs, so my body just gave up because it needed a break.
Syringomyelia means that I have a cavity in my spinal chord filled with cerebrospinal fluid (CSF), which is called a syrinx or cyst – in my case the syrinx goes through five of my discs, starting at the 5th thoracic disc & ending in the 10th thoracic disc. The cavity causes nerve damage & depending on it’s location, it can cause things from paralysis to blindness; as my syrinx is in the middle of my spine it causes issues all over my body, including my legs, hands, shoulders, neck & ribcage. The syrinx can grow or shrink (depending on the type) & some people can have more than one; usually syrinxes do grow bigger, which means that as time goes on a person’s syringomeylia can cause more & more problems. It is also possible for people to have syringomeylia & not realise, as I did for the start of my life – although I did have backaches as a child – but hey, who listens to a 7 year old that says her back hurts?!
Syringomyelia can be treated with surgery, which involves draining the syrinx of it’s fluid to take some of the pressure off of the nerves, but this isn’t a permanent fix, as the fluid will just come back, & I’m yet to meet a doctor that wants to perform the surgery on me.
Lordosis basically means that my spine isn’t the right shape & because my lower spine is so misshapen it puts pressure on some of my organs & causes a lot of aches & pains. One paramedic once said that instead of my spine being an S shape, it’s more like a spoon – my lower spine is too curvy & my neck is too straight.
My scoliosis isn’t that severe but can also cause aches & pains. Both lordosis & scoliosis can be treated with surgery, but this has to be done before 18, & I was 18 when I was diagnosed, so I just have to live with my funny shaped spine.
After getting my diagnosis things really changed for me; I was treated better by doctors & was sent to a pain team to help manage my symptoms. I was able to learn more about my conditions & the best ways to control them & treat them, using the internet & online support groups. There’s been a couple of occasions since my diagnosis when I’ve had to use my walkingstick, but generally (in terms of my back/legs) I’m doing quite well now. My pain is still horrendous & I’m on morphine 24/7 via morphine patches but I also take nortriptyline to help relax my muscles, which allows me to sleep despite the pain. I’m still very weak, despite having some hydrotherapy & it’s very likely I’ll never be as strong as I should be. I occasionally wake up with numb legs & arms but generally I get the feeling back within that day (most of the time within an hour). I have some problems now that I didn’t then, my body spasms & twitches a lot & I really struggle to have showers sometimes (I have baths instead, of course).
One thing that time has done for me is that it has helped me to accept that I’m now disabled & that there is a very high chance that I may end up wheelchair bound at some point in my future. Syringomyelia is a very unpredictable condition & every sufferer deals with different symptoms; I’ve learnt this through Facebook support groups for the condition – so I don’t really know what’s going to happen from one day to the next. I’m not ashamed of my condition, but I do have days where I hate my body & my life, but I think that’s normal for spoonies. Since losing a lot of friends when I was ill I’m very careful about who I let into my life but I do have some great friends & my boyfriend is wonderful.
I have been diagnosed with other illnesses since my syringomyelia & lordosis diagnosis but I’ll discuss that in another post as this one is already quite long. I hope you’ve learnt something through reading this; educating people about my condition is so important to me due to how rare it is. If you managed to get this far, then congratulations – I really appreciate you taking time out to learn about syringomyelia & to read my ranting.