Please Donate to Help Me Get Spinal Surgery

As some of you may know, I’ve really been struggling with a number of spinal issues over the past few years.

The short story is that I need to have more surgery, but my HSE neurosurgeon wants me to wait until my condition worsens before operating. Meanwhile I’m in a lot of pain and worried about more damage being caused. I sought a second opinion from a neurosurgeon in Belfast who did more tests, and he’s suggesting we operate sooner rather than later. He said he can’t guarantee surgery will relieve my pain or numbness, but it will prevent further damage to my spinal cord. I can apply to a cross-border scheme, where the HSE cover some of the costs, but I need to pay upfront before the operation.

The long story is… long.

Three years ago I woke up with a sore shoulder, which got worse over the course of a few months. An X-ray showed calcific tendinitis. By about May 2021 I was starting to get numbness in my hands, mostly when driving. By the end of that summer I had lost the power in my hands to the point that I was frequently dropping objects. In October 2021 I had a steroid injection in my shoulder, and while explaining everything to the doctor, he asked me to do some neck movements and, as a result, advised I get an urgent MRI of my cervical spine (neck). This scan showed severe cord compression at levels C5-C6. The Neuro department in Beaumont decided to operate. I asked if I had any other choices, and was told if I didn’t have it done urgently, I’d likely be quadriplegic within months.

The surgery (ACDF - Anterior Cervical Discectomy and Fusion) was a success… in the sense that it removed the disc that was putting pressure on my spinal cord. However - and I only found this out a few months ago - I have a condition called Myelomalacia at this level of my cord, caused by the disc pressing onto it for who knows how long. This is essentially like having a bruise on the spinal cord, but it’s permanent. There is no cure or fix for it; once the cells die that’s it.

I naïvely thought my symptoms would ease after surgery, but they got worse. Significantly worse. When the excruciating pain from the surgery – having my neck cut open - subsided, I found the pain in the back of my neck was getting worse, as was the nerve pain shooting down my arms. I was told this was normal post-op. A follow-up MRI in May 2022 showed that the level above my surgery, C4-C5, had continued to degenerate, which would be usual after around 10 years, not 6 months. It was suggested that more surgery was in my near future. The doctor consulted the head neurosurgeon, who said ‘no, come back in a year and we’ll see how you are’… I told her I can barely get by from day to day, never mind a year. The neuro team referred me to Pain Management, who gave me an appointment for December 2022.

By around Autumn 2022 I had also started developing sciatica in my right leg. My GP said I’d hardly be unlucky enough to have a bad lumbar as well as C-Spine… but she referred me for MRI anyway, where I found out I had two herniated discs in my lumbar spine which would also eventually need surgery.

Come July 2023, I attended a scheduled neuro check-up. I explained the numbness and tingling in my hands and arms have disimproved dramatically, where I can barely hold my head up at times, my baby fingers are going dead, and so on. Upon requesting an updated MRI of the neck, I’m told I didn’t need one. I’m told I DO need a microdiscectomy in my lumbar spine, but not to panic as it’d probably be in a year or so.

Later that month, and I was scheduled for a pain management procedure called Pulsed Radiofrequency Therapy, where they put the nerves in my neck to sleep. I was gowned up and ready to be put under, but just before going down to theatre I was told they weren’t going to perform the procedure after all, as it was too dangerous. Instead, I ended up with a half dozen steroid / nerve block injections. As communication was non-existent, I’m not entirely sure exactly what was performed on that day, but I received zero relief from any of it.

Fast forward to September/October 2023: I’m barely able to stand for more than a minute with the pain in my whole body - neck, back, arms, legs. While driving home from work one day, my right foot stopped working. I physically couldn’t press the accelerator pedal. It was terrifying. I went to my GP the next day who sent me to A&E for another urgent MRI as she suspected Cauda Equina Syndrome. The doctor in Drogheda said it couldn’t be that because I wasn’t incontinent. My husband, Philip, argued that by the time I was wetting myself it would be too late. The damage would be done. So why not be proactive and perform the scan my GP requested? Nah - he knew best. The ED doctor gave me morphine, “diagnosed” me with sciatica and sent me home. The pain and pressure I felt was indescribable. No amount of medication would take the edge off.

A few days later I got the lumbar MRI I needed thanks to my very persistent sister calling around – and there had been significant changes between February and October. My GP sent the results to my neuro team in Beaumont. I get a call one Monday asking if I could come that evening to be admitted. For what, I asked? ‘Your back surgery’. Oh right. Apparently when the neurosurgeon tried to cut the herniated discs, her knife was insufficient and she resorted to using a drill. The fluid had been there so long it had calcified.

During my recovery, I mentioned to the neuro team that I felt my neck was getting worse, especially as I had started waking up with numb hands every day. These new symptoms would last a few minutes before easing. Again, the surgeon said I didn’t need an updated MRI. So my GP referred me for one instead.

My lower back definitely did improve after surgery - that pain and pressure was gone (for a few months anyway). But I knew my neck had got a lot worse again.

On to January 2024, when I get a call from my GP saying the latest MRI results are worrying – with degeneration accelerating compared to the previous scan. Cord compression, cord flattening, myelomalacia etc. This news was a lot worse than I expected, but it did explain my symptoms. Once again, I met with my neurosurgeon who said she still didn’t want to operate yet as (to her) the risk outweighed the reward. Her solution was further pain management. I told her nothing had worked up to that point - myriad painkilling drugs, physiotherapy, nerve injections, and even acupuncture. Nothing helps. I have no quality of life. I can’t work, so we’re living off one income. I can’t go anywhere or do anything as I have to rest so much…

I was met with a shrug.

I decided I need to seek a second opinion, and research led me to a neurosurgeon in Belfast. He reviewed my existing images and told me I had a congenitally narrow cervical spinal canal. He explained he could see the myelomalacia in my 2021 images, which no-one had explained to me before. It may very well be causing or contributing to some of my symptoms. He was 50/50 about whether to operate so sent me for a Dynamic MRI of the cervical spine, where they take images of you with your head flexed, normal and extended. After reviewing this, his advice is surgery. My symptoms are not going to get better without it. The diameter of my cord has shrunk from a relatively normal 8mm to 5mm, which is critically narrow. I asked how long I could hold off on more surgery and he said it could be a few months, maybe even up to a year, but it’s not an exact science. He made it very clear we’re aiming for the silver medal here, not gold. Avoiding further damage to my cord is his goal.

My entire spine is a mess. I’ve been told a few times my MRIs resemble those of an 80 year old. I have Degenerative Disc Disease and Osteoarthritis in almost every part of it.

In my cervical spine, I also have bone spurs causing foraminal stenosis at different levels – which means extra bone growth is compressing nerves that branch out from my spine.

In my thoracic spine, I have 6 bulging discs with some cord flattening, but nothing too serious when compared to other areas.

In my lumbar spine I have DDD, the two herniated discs that were operated on, and foraminal stenosis. I continue to be in a lot of pain with new symptoms in my legs appearing constantly, and I’m still wary of Cauda Equina Syndrome being a part of my future.

At the moment I’m struggling with a lot of pain. The summary is: the neck is causing issues with my head, neck, shoulders, arms, hands. And my lumbar is responsible for the symptoms affecting me from the waist down.

Right now, every day, I have to live with: severe neck pain, bilateral shoulder pain, nerve pain going down both arms, elbow pain, numbness/tingling/twitching in my hands, waking up with completely numb hands (unable to even lift my phone), pain in my shoulder blades, pain and pressure in my lower back/buttock area, sciatica in both legs (worse on my right side - and where it used to only go to my knee, is now going all the way down to my toes), numbness in my feet, tingling in the backs of my legs, a “jelly legs” sensation where I feel wobbly, and random twitches/spasms around my body.

Every day, I need to take around 30 tablets, consisting of various painkillers, anti-inflammatories, anti-spasmodics, etc (all of which are having knock-on effects on other areas of my health). I use mobility aids to help me get around. I have to lie down a few times every day because it physically hurts too much to keep my head up or to sit or stand for long periods of time. I rarely make plans, because more often than not I’m in too much pain and am forced to cancel them. I can’t work. If I do something such as go to a medical appointment or physio, I’m bedridden for the rest of that day. The lack of co-ordination caused by my symptoms means I drop things constantly, nor can I lift anything heavy. I can’t walk my dogs. I get told a lot that I ‘look really well’, but I can’t describe the pain I’m in from day to day. Nor can I describe the mental suffering this disability causes me - the guilt, feeling like my body is letting me down, thinking I’m useless, the financial burden, the social isolation, the fear of missing out on starting a family… it all wears you down.

All of this is then further compounded by the barriers I’ve faced within the Irish healthcare system. I’ve been fobbed off and ignored so many times, by so many doctors, in so many hospitals - I’ve got lots of horror stories I won’t share here. It’s soul destroying. I’m lucky I have a fantastic GP who advocates for me. When I first met my new neurosurgeon in Belfast, I felt compelled to thank him at the end of my consultation for not speaking to me like I was a moron - that’s how low the bar has been set from my previous experiences with medical professionals.

I’m 37 and would love some semblance of a normal life again. My moshing days are well behind me, but I’d give anything to be able to go for a walk, or work a full day without feeling like passing out from the agony. I know it’s unlikely I’ll ever be pain-free, but if there’s even a slight chance this surgery could help a little then I’ll take it.

If you could donate, or even just share this on your social media, I’d be very grateful.