Health Update | My Neurosurgeon Appointment

Ever since I found out that a large spinal cyst has been making itself at home at the bottom of my spine I've been trying to find someone who can help. The cyst itself isn't a rare problem, a lot of people have small ones that will never cause them any issues but symptomatic tarlov cysts are categorised as a rare problem, one that affects women a lot more than men. I'm used to being rare which means I'm also used to doing my own research, becoming my own doctor and advocate when the professionals around me fail me and that's exactly what I've spent the last 18 months doing.

My latest MRI scan images, the large white mass is the cyst.

Last year I found out about a neurosurgeon in the UK, the only person who seemed to be performing successful surgeries on these kinds of cysts so of course, I wanted to do everything in my power to see him. My spinal surgeon discussed my case in a meeting where the neurosurgeon's team was present and they said they didn't want to operate so I hit a brick wall. I quickly gave up on my useless spinal surgeon though and decided to try and get referred to the specialist by someone else, I wanted to sit down and hear him tell me himself that there is nothing he could do. This year I finally managed to get my GP to refer me, but I was warned that the waiting list was long and it was likely to be at least a year until I was seen. Not long after this though I had some specialised scans and about a month after that I received an appointment to see the neurosurgeon, just months after I'd been originally referred. We assumed that the scan results had backed up everything I've been saying or they got his attention in some way for me to be seen so quickly. Soon enough the day came around and on Monday I had the long awaited appointment.

I saw a member of the consultants team first who asked me some questions but I think it was clear from the start that he was a little out of his depth so he went to have a chat with the neurosurgeon and came back, with him in tow. I really didn't expect to be seeing the actual neurosurgeon as I'd heard he was on sabbatical.

He asked me a few more questions and explained what I already knew from speaking to others with this condition, my cyst is larger than most and a completely different shape to the ones he usually treats too. I'm even rarer than we first thought. He explained that there was a small chance that due to the large size of my cyst the cause of it could be a brain problem called hydrocephalus, this is the build up of fluid on the brain and it's possible that this fluid has collected at the bottom of my spine. So, I'm being sent to see a brain specialist to have a MRI to either rule out or confirm the suspicion, it's only a small chance but hydrocephalus does seem to come up in connective tissue disorders. If it's not the case though I'll be heading back to see the neurosurgeon where we'll discuss the very small possibility of him operating on me. The surgery is risky and even riskier because of the size of my cyst. It turns out that having the brain problem would be the more ideal situation as the brain surgery to fix it is no where near as risky as the spinal surgery to remove the cyst. It's a weird situation to be in where we have to hope I need brain surgery.

More than anything though it was such a relief to be believed, he didn't question my pain, he didn't even question my use of a powerchair. He took on board everything I said and even reassured me that even if I do have the brain problem he won't be washing his hands of me. Sometimes it's good being rare because it gets doctors attention, which often means you won't be forgotten or disregarded.

Of course I would have preferred it if he told me there was some miracle cure but at least I'm on the right path now, and even if they can't do anything I'm being looked after by people who understand the condition.

I'm currently fundraising for a vital new powerchair as I'm becoming increasingly housebound due to how basic my current chair is, can you spare a few pounds to help? Donate here.


  1. It's always good news to find someone who understands what you are going through. I'm considering asking to change my consultant because although he diagnosed my rare condition very quickly and has done international speeches on the disorder he doesn't seem to have much time for his patients. I do hope you can get some help and you don't have to wait soon. I'll be following your story x

    1. It really is. If you think it's best then go for it, sometimes the doctor that diagnoses us isn't always the best to treat us! x