This time last year, I was desperately fundraising in an attempt to get neurosurgery that all the NHS neurosurgeons had expressly told me not to get.
I was dealing with the most severe pain I had ever experienced on a daily basis, continuing to deteriorate neurologically loosing more and more function each day, and I was getting to the point where I was impersonating Dory from finding Nemo!
When I look back at where I was a year ago, it is with a combination of immense happiness to be in the position I am in now, yet with an overwhelming sense of sadness that I have watched so many years of my life tumble away with absolutely no appropriate medical care that should have been there to stop it happening.
I have avoided writing about my experience of going through surgery up until now, but with being a year post surgery, and some time to reflect, I feel like it would be a good time to start writing once again. Perhaps the next few posts may enable someone else fighting this beast to trust their intuition before it gets to the point where longterm damage is a real possibility.
A couple of weeks ago, I was officially discharged from my neurosurgeon. I had a scan completed, and this is showing a small section of bone grown around my fusion. I was also told that I officially have ‘no loose screws’ – something I need framed for the next doctor I meet who tries to tell me its all in my head!
I wish I could tell you I was jumping from the rooftops in joy – part of me is, but the other part of me is acutely aware of the overhanging neurological symptoms that are still part of my day to day life. I knew surgery would not fix everything, and I am so grateful to be in a position where things won’t deteriorate further, but had this surgery have been done sooner, I would not be in the position I am now in. I would not have had this much neurological damage to heal from.
Leading up to this follow-up I was terrified. I knew that things were much better than they had been, but I also knew that I still have so many symptoms that are still proving problematic. Before surgery, my surgeon had told me it could take up to a year for my brainstem to heal, so this elusive one year deadline felt terrifying when I knew that I still had so many issues leftover. My head was filled with worries of whether this would be as far as my recovery would get. Whether the damage was too far gone to recover from.
What he hadn’t told me at the time was that he hadn’t actually expected me to get any better at all – owing to the level of instability, and severity of the chiari, he had only expected to halt the progression of symptoms. I am very pleased to say he has managed to do much more than that.
Today’s life is very different to life before surgery. The improvements to my memory and ability to converse and communicate are overwhelmingly positive. I no longer feel dissociated on a constant basis, and it literally feels like the world is in colour again after years of it being in black and white. As soon as I woke up from that surgery, it felt like I had woken up for the first time in 5 years. I was no longer stuck in a fuzzy world where nothing felt real. I was present for the first time in so long that I have no real inkling of when that feeling first started. I am no longer dealing with periods of paralysis in my lower legs, and my swallowing has improved immensely. My levels of pain day-to-day are so much more manageable, and the periods of time in which I pass out purely because I sit up are thankfully largely gone (something that was happening too many times a day to count). I am gradually experiencing less sudden electric jolts through my body, less randomly thrown items across rooms, and far less vertigo upon moving my head. My migraines have gone from 2-3 a week to just 2-3 a month! So much has changed that I can’t even begin to write it all down.
However there are still many symptoms overhanging – and although some have started to improve, I don’t know how many will disappear completely. I still experience balance issues, loss of sensation and periods of ‘forgetting’ to breathe. I still have weakness down one side of my body (hemiparesis), and still experience some periods of my body jolting as if plugged into the mains. I still have issues with my grip, and my fine motor skills are clumsy and uncoordinated, and my memory is still sketchy to say the least. I am still experiencing bedwetting at random, and periods where I don’t even realise I have had an accident whilst wide awake until I touch my trousers and realise they’re wet (thankfully not too often) owing to loss of sensation that is still present. My core muscles are almost non-existent, and because it took 5 years to get treatment (for most of which I was unable to keep active), I have lost more strength than I could ever have imagined throughout my body. My vision is still variable – I still get times of double vision and times where it seems like someone has turned the lights off for no apparent reason, and my proprioceptive difficulties still leads me to walk into door frames and walls on a regular basis. These are just a handful of leftover symptoms – but there are many many more.
On top of the leftover issues, I am only now starting to realise the true extent of the trauma left over from not only undergoing such a massive surgery, but also from having to fight tooth and nail to get surgery that has allowed me to stay alive. Even I wasn’t aware of how dangerous my situation had become, and it was only after being shown a video of my skull literally sliding about freely upon my spine taken during surgery that I really began to understand. The physio, who had been briefed by the team, sat me down in the first appointment I had with her, and asked if I realised how dangerous that was. She told me I was extremely lucky not to have already died, or at best ended up completely paralysed needing a ventilator to survive.
For 5 long years, almost every neurologist and neurosurgeon I had seen on the NHS had told me that there was absolutely nothing wrong with me. That every symptom was psychosomatic, and that I was essentially just making it all up due to mental illness. Not once was a proper neurological assessment carried out – even though I had been referred due to vertigo, loss of sensation and hemiparesis. All of which are bog standard symptoms for a neurologist to look into and treat. Due to their insistence that nothing was wrong with me, my family spent years believing this, and were understandably reluctant to believe me over medical professionals. I knew something was majorly wrong. I know my mental health, and I knew that the two were not related, but I didn’t carry as much clout as a neurologist does in proving this. I spent 5 long years being told that ‘under no circumstance’ should I go ahead with this surgery, and that there were absolutely no medical grounds to do so – yet look where I am just 1 year post surgery.
I feel so angry at the injustice of this, not just for me, but for everyone else I know in the EDS community who has fought or is still fighting to get help for these conditions. I am livid that, potentially, my residual symptoms will be permanent, and that this would have been preventable with prompt treatment. Even I can see logic in the argument that if every other part of my body can be hypermobile or prone to herniation, then the same could apply to my spine and brain, and that neither would be good news to a spinal cord sat in the middle of these two important structures. I am also frustrated with the inability to get adequate follow-up care on the NHS – had I have been in a car accident and caused neurological issues in that manner, I would be able to get rehab on the NHS to help with this, but because my instability was caused by my EDS rather than trauma, none of this is open to me. Not only this, but since surgery, every neurologist I have spoken too has since congratulated me on getting the surgery they told me I should never have gotten – talk about messing with someones head.
I still have a long path to recovery ahead of me, and as per usual with a bendy body – you fix one thing, and another falls apart. I am now in the process of getting my hips diagnosed and treated (waiting on an MRI and steroid injections into both), and help for my lower spine as I have herniating and degenerative discs that are now causing a problem further down. I now also have 3 herniating discs in my cervical spine and am waiting for another referral to neurology to look into what my neurosurgeon suspects is thoracic outlet syndrome (I am getting numbness in my arm any time I lift it above shoulder height).
I will write the process of surgery in a series of posts – but I wanted to bring awareness to the psychological impact of such systemic neglect of a patient. Since surgery, I have noticed an increase of my PTSD symptoms specifically around medicine, and am also struggling to keep on top of my depression. Both of these feel inextricably linked to the gaslighting received from those who should have had my best interests at heart over the last 5 years. This is not a negative post by any means, but I feel that it’s important to say that although I am physically much better than I could have imagined possible (BIG thank you to all of you who helped me get there), the trauma of the last 5 years has not disappeared alongside my physical improvements.
The temptation to sit here and not mention this when so many people contributed to my surgery is very strong – but I have always wanted to give a realistic view of things in the hope this will be helpful to others facing or working with people in similar positions. It’s ok to feel grateful, angry and grieve post surgery – or any other combination of feelings.