CSF Leak vs the NHS: Long story short, it was a bad time …

Hey! Hey!

My neurology follow up appointment to discuss the second opinion on my cerebrospinal fluid leak came just 8 days after losing mom. 8 days. To say I was in no mood to discuss my headache was an understatement.

Headaches, hospitals and more …

Reluctant to speak to anybody, I put my headphones on and said a total of 10 words during the hour long journey to Stoke. As per my usual hospital rituals, when we arrived I queued for a unexplainably long amount of time for my Costa frappe! Drink secured, I checked in on the electronic screens and made my to the usual outpatients 3 department ready for the inevitable “the clinic is behind” speech.

Despite being very much used to hearing this phrase when entering the neuro department, today was one day I could have done with my consultant being close to on time! If I remember correctly, my appointment was scheduled for 9am which would make it the first of the day. Whilst I will never mind a delay because of how thorough my consultant is, I must admit I never understand how someone can always be so far behind!

Despite having a personal best lateness of over 2 hours, today was only about 45 minutes. Again, my irritability was solely down to what I had been through recently, not having to wait. Greeted with a handshake as normal, he sat back in his chair ready to deliver what I knew was going to be more bad news.

It’s a nope from my spinal fluid leak and I …

He explained that they had received a response from the specialist they had asked to look over my seemingly infinite file of scans. To say the letter that had been written in response to the request was unhelpful would have been an understatement, but to summarise it simply stated:

• They can’t see anything definitive on my scans.
• They felt the CT Myelogram scans were performed to a high enough technical quality.
• There was nothing they felt they could do further to help me.

As I said, unhelpful!

Over the past 8 months of my CSF Leak journey, I had become very well informed of the challenges around locating CSF Leaks. Negative imaging does not rule out the presence of a spinal fluid leak because not only are there 3 different types of leaks, but there are also different techniques for performing imaging.

For my consultant, he was still confident there was a leak to find. However, we had now in fact reached an even higher brick wall to navigate, and I just did not have the energy for this.

Central nervous system takeover …

I burst into tears. No warning. No chance to rapidly blink the tears away. No chance to take a deep breath and repress. No nothing.

Once I started, I didn’t know how to stop.

After saying that he knows things are difficult with mom being poorly, I realised I hadn’t even told him we had lost mom. I let dad break that news while I looked at the floor and silently sobbed.

He went on to apologise for not being able to say what he knows I want to hear, but the lack of a helpful response meant his hands really were tied. As I remained silent, he continued to promise that they were not abandoning me, or getting rid of me as a patient, but all they can do now it try and find me some symptomatic relief.

“I just want my head to stop hurting” was all that I managed to blabber out.

Silence fell for a few moments whilst I continued to refuse to make eye contact with anything that wasn’t the floor.

“It is what it is I suppose” I breathed out when the silence became too uncomfortable.

Eventually resuming eye contact, I forced a half smile. Partly to try and show I remained very grateful for everything he was doing, and partly to try and show I didn’t blame him.

Puffy eyes and blotchy skin, we made our way out of the department in what had to be record speed. I remember dad pausing after seeing my favourite nurse’s names on one of the clinic doors and asking if I wanted to hang around to speak to her.

I didn’t.

I mean I did want to, but my emotional cup was already overflowing.

My head pain was high, unlike my quality of life …

Over the following 2ish months, my headache worsened alongside any remaining strands that could be considered my quality of life. I think we could safely conclude now that what I thought had been a positive response to the Botox was more the adrenaline of the situation.

I began to spiral at the idea that this was now my reality. I was in no way well enough to return to work, but I also had no idea of where to go next in terms of treatment for my spinal leak.

Reminding myself that my mom would no be standing for this, I woke up one morning in late November with a newfound burst of motivation. I pulled out my laptop, removed the asthma-triggering levels of dust that had built up on it, and leapt straight into the deep, dark depths of google.

Back to that (self-accredited) PhD in spinal CSF Leaks …

Those of you who have followed from the start will be aware of my PhD level knowledge in CSF Leaks I acquired before even being diagnosed with the consition. If you are not, go back and check out understanding CSF Leaks first!

Fluttering my fingers above the keyboard, I plunged in the following searches:

• Understanding different types of spinal CSF Leaks
• CSF Venous fistulas
• Different types of myelography for CSF Leaks
• What is a Digital Subtraction Myelogram (DSM)
• Where in the UK can perform a digital subtraction myelogram
• CSF Leak specialists in the UK

The more I read, the more I was able to begin narrowing down my google searches and become more specific. A CSF venous fistula had been mentioned once by my neurologist as he had explained they are like finding a needle in a haystack.

This type of spinal CSF Leak is where the cerebrospinal fluid is leaking directly into a vein. It is also the most challenging type of CSF Leak to pinpoint. Therefore, knowing my track record with being a medical anomaly, many had edged their bets that this is the type of CSF Leak I will have.

After reading several articles from a US organisation, it became clear that a digital subtraction myelogram is the more appropriate type of myelogram for locating a CSF Leak. I was also aware from conversations that they do not have capacity to perform this type of myelogram at Stoke, so I would have to try and find a hospital that does.

Finding a 3rd opinion …

Armed with this information, and the reassurance from my current neurologist that he would be happy to put a referral in for me, I began to research CSF Leak specialists in the UK.

My starting point was the CSF Leak UK website which lists the recognised specialists across the country. When it comes to researching consultants, I have had plenty of practice! On top of my now 12 year stint as a neurology patient, I have also seen consultants in respiratory, gynaecology, ENT, maxio-facial, gastro, dermatology, orthopaedics, cardiology and rheumatology. What can I say? I like collecting hospital specialties like they are Pokemon!

It seemed like my options were Newcastle, Cambridge or London. Having discarded one of these on the grounds that was where the unhelpful second opinion came from, I took the plunge and booked a private appointment with a neurosurgeon in London. Despite physically squirming at the £300 consultation fee, the idea of a 2 year wait on the NHS made me squirm even more!

For those wondering why I booked to see a neurosurgeon when I was under a neurologist, the idea of booking an appointment with a different neurologist left me feeling like I was cheating on my current consultant!!

It could only happen to me!

X O X O,

Your favourite headache!

Next time ~ everything I have learned so far

Long story short, it was a bad time ~ Long story short, Taylor Swift, Evermore