Tugging at me all the time: Spinal needle #6 …

It’s been a while since Lucy vs The Leak came face-to-face with a medical appointment intended to actually help take a step towards ending this ongoing battle, but here we are!

For those who are new here, hey! I’m Lucy. A 29-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body likes collecting chronic conditions like they’re Pokemon!

Whilst I can think of greater things to be achieving in my 20s, if some good can come from me yapping about my experiences then I’d say that’s a win!

Scratching off another hospital trust …

Most people possess a scratch map to display all the exiting places they’ve been fortunate enough to holiday in. I, on the other hand, possess one to keep track of all the different hospital trusts tasked with trying to sort me out! For anybody interested, the current total stands at 15 hospital trusts.

Anyway … back to the topic at hand …

After close to 18 months of battling, the CSF leak team at The National Hospital for Neurology and Neurosurgery (NHNN) finally gifted me an appointment with the consultant I’d nicknamed the phantom neurologist! For those new here, despite having his name and skills that would earn me a job at the FBI, this consultant was impossible to track down and chase up. Therefore, until I physically saw him, I wasn’t’t convinced he even existed!

This dear readers is one of the rare occasions where I happened to be completely wrong. In spite of being harder to locate than Taylor Swift, the success of the consultation almost made up for the 18 month long wait! He listened, accepted what I said, showed empathy and didn’t gaslight …

The consultation concluded with him confirming agreement with my previous 2 neurologists. Whilst they haven’t managed to find the leak yet, there was no other plausible explanation for my cocktail of symptoms. Therefore, he remained confident in explaining that it is a CSF Venous Fistula they are looking for. A needle in a haystack.

Below optimal imaging …

Despite what seemed like hundreds of doses of radiation from CT scans, he felt as though not all the images obtained were of optimal quality. I’d also apparently never undergone a myelogram on my right side.

He explained that whilst there are naturally risks that come with a myelogram, if I want a chance at fixing the leak for good then the benefits definitely outweigh. The irony that the main risks of headache and a CSF leak are also the main reasons the procedure is happening!

He planned for the procedure to take place within 2 months of this consultation with an overnight admission for observation.

Apparently someone within the NHS felt an ounce of pity for me because I was scheduled for admission 7 weeks after this conversation!

7 weeks later …

“You are scheduled for admission to undergo CT Myelogram on 30th March 2026. You must arrive at the ward by 8:00am ready to be taken down to radiology at 9:00am …”

Now, given the length of time I’d been suffering for, you’d expect my initial thought to be elation at the lack of long wait for the procedure.

It wasn’t.

My first thought was annoyance because 30th March also happened to be the first day of the school Easter holidays. Closely followed by a sigh of realisation at just how early I had to be in central London!

What can I say? Priorities right?

Annoyance aside …

Annoyance aside, or at least that was the impression I attempted to give on the surface, I remained incredibly grateful to the headache gods for blessing me with a short waiting time.

Despite having made many trips to London by this stage, my dad remains a passionate hater of the city. Therefore, upon suggesting we travelled down on the Sunday evening and stopped overnight, it’s safe to say the suggestion received silence eerier than tumbleweed!

Nope, we were going to drive down on the Monday morning. That annoyance I pushed aside? Yeah, it resurfaced pretty quickly! For some insane reason, leaving at 3:30am on the Monday morning, parking on the very outskirts of London, and catching the tube to Russel’s Square (the nearest stop to the hospital) was the better option.

I’ll spare everyone the back and forth of this debate, but let’s not miss out the key detail of the moment approximately 3 days beforehand where dad realised I was right. The only problem then concerned the lack of available affordable accommodation by this point.

We ended up driving down on the Monday morning …

Tiredness, tubes and trauma …

If I erase the lack of sleep, ridiculously early start, the upright position for the journey, a motorway diversion and several wrong turns in London, I could almost portray the journey as passable. Unfortunately, all of the aforementioned bullet points could not be erased.

Having parked up at the furthest tube stop on the Piccadilly line somewhere around 6:00am, there was just time to consume my morning cocktail of antihistamines whilst dad worked out how to register my blue badge and activate the free parking.

The tube was navigated uneventfully, but that was 100% down to my familiarity with London transport. I’d love to say dad catching the tube by himself back to the car after my admission was as successful, but that would be a blatant lie!

Having escaped the discomfort of the underground warm air, it was a quick 5 minute walk to the hospital.

The National hospital of Neurology and Neurosurgery.

After checking in with security on the main reception, they directed us towards the lift and instructed us to select level (floor) 7. I was adamant this wasn’t the level specified on my admission letter, and I was right. However, true to my usual form, I’d been moved last minute; now finding myself habituating on the epilepsy telemetry ward!

Admission time …

Safely on the correct ward, we were shown to my room for the stay! Being a telemetry ward, every patient had their own mini room. Very different to the ward bays I was more familiar with. It almost felt like being in a private hospital as opposed to the NHS!

A healthcare assistant emerged shortly afterwards to do lying and standing blood pressure and an ECG. She then proceeded to hand me what she called a welcome pack made up of:

• Information booklet
• Grippy hospital socks
• Ear buds
• Eye mask
• A pen

This whole concept was very alien to me in comparison to my previous NHS admission experiences. Although, take note Stoke! Those ear plugs would have hit hard during the admissions with the lady who screamed every 30 minutes each night! Nah, jokes, if you are reading, I love you guys!

She finished her little pre-admission routine with words which genuinely had me wheezing as soon as she left the room:

“I hope you enjoy your stay …”

Now, don’t get me wrong, she definitely has the sweetest intentions. However, it’s the National hospital of Neurology and Neurosurgery. A long way from the Savoy or the Ritz!

Once handover to the day staff occurred, the nurse blessed (cursed) with my care came to complete the admission paperwork. A (no so) brief recap (for the hundredth time) of my complex medical history was taken. This was followed by a recording of my cocktail of MCAS drugs and it was finally time to gown up ready for radiology. All that remained was for a quick pre-procedure visit from one of the headache doctors.

Meeting the headache doctor …

Shortly afterwards, an incredibly upbeat doctor entered my room. She introduced herself as Dr Laura, one of the neurology headache doctors. She asked some further questions about my headache, but I knew I could trust her wholeheartedly the moment I described the pain. From day 1, I always maintained the headache feels like my brain is falling out of my skull which to the vast majority of people sounds ridiculous bordering on impossible. Dr Laura sat there and nodded assertively whilst simultaneously assuring me it wasn’t ridiculous and absolutely made sense to them.

She continued to explain that the procedure would be very similar to my previous myelograms, but this time they would measure my pressures and take samples of my spinal fluid for testing.

Following a quick check of my blood results, I changed into the theatre gown. Ready to go down to radiology imminently!

It could only happen to me …

As a certified neurologist professional patient, the key takeaway from the speciality is they never rush. So, when it reached 9:00am and I wasn’t down in radiology I didn’t bat an eyelid.

9:15am and Dr Laura reappeared to inform me they were a consultant radiologist down. This meant emergencies and electives would be combined, and understandably, emergencies take priority.

The only problem was she not only could she not say when the procedure would be done, but she also couldn’t guarantee it actually happening at all. This frustrated me on a personal (and entirely selfish) level because not only had I endured the 3:30am start, but also mentally psyched myself up to have it done.

If you’re not aware of my previously traumatic myelograms check out CT Myelogram #1 and CT Myelogram #2. If you want to read a factual and medically written description of the procedure then check out the spinal CSF leak foundation.

However, the bigger issue concerned my we’re going to drive there and back dad who now found himself stuck in London. Not exactly the drop and go experience he’d envisaged!

Genuinely understanding the situation from our side, she insisted she would call the department every hour. Furthermore, should the procedure not be able to go ahead today, would try her very best to get it done the following day and just keep me on the ward a day extra.

As I say, it could only happen to me!

A blessing from the headache gods …

Whilst dad chose to pass the unknown length of time watching robot wars on my room TV, I chose to have a nap! Somewhere around 12:30ish I was woken by what we assumed would be lunch. It wasn’t. It was a porter. This meant one thing … it was spine jabbing time!

Despite the offer to accompany me down to radiology, dad opted for a swift exit back home! My mom, if she were here, would have been scrubbed up and watching their every move as an ex-theatre HCA. Strangely enough dad doesn’t share that warped curiosity. I miss being creeped out by my mom’s enthusiasm for my suffering in order to benefit her CPD.

Down in radiology …

In the words of Taylor Swift:

I think I’ve seen this film before, and I didn’t like the ending …

Anyways, time to introduce myself to my newest victims. Sorry, neuroradiology team. Easy mistake to make! After all, at this point I’d happily overlook the lack of answers in favour of a loyalty card!

As if life hadn’t presented me with enough disappointments, the loyalty card was also off the table! Instead, the only thing on the table would be my spine!

If this is character building, I think my character is built enough. I’m happy for the plot to calm down!

Being my 3rd myelogram, I already knew the pre-procedure speech:

• Lie on my side – specifically my right side.
• Area marked up, cleaned and then numbed with a generous amount of local anaesthetic.
• LP needle inserted and scans taken to check positioning
• Opening pressure measured and CSF samples taken
• Contrast inserted and more scans taken

Risks of the procedure included:

• Headache (the irony)
• CSF leak (the irony x2)
• Infection at the needle insertion site
• Nerve root damage (if caught)
• Something about my kidneys from the contrast

As I say, I’d been here twice before, I knew the deal so went ahead and signed the consent forms.

Lights, Camera, Action …

Unlike my previous myelogram experiences, this neuroradiologist was considerably much gentler. The local anaesthetic was administered in a was which did not feel like darts were being thrown at my spine. Unlike myelogram #2!

When the LP needle is inserted, the most I felt was some pressure as placed it in the correct position. The opening pressure recorded at 10 point something (they didn’t tell me, but they also didn’t whisper quiet enough!) and they began to draw the samples for testing.

We checked afterwards, my previous spinal opening pressure was 19. However, it is important to note opening pressures hold little weighting diagnostically for intracranial hypotension.

I don’t know exactly how long I was lying there whilst they collected the samples, but I do know it was long enough for my entire right side to go numb! Honestly 0/5 stars for comfort on that rock solid CT scanner table! It must have been taking an abnormally long time because eventually I the doctor collecting the samples said “Are you okay? I promise we are nearly done, but it’s dripping out very slowly so is taking a while …”

I’m no doctor, but I’d edge my bets it has something to do with the low pressure headache I’ve endured for over 2 years now!

Time to get scanning …

Finally collected, it was time to insert the contrast and get scanning! This who process remained pretty painless if you forgo the lack of feeling in my right side after now 45ish minutes on that rock solid CT table! Actually, thats a slight oversight. I did in fact feel a fullness in my head. Something I later found out was a result of the higher levels of contrast used compared to my other myelograms. This sensation didn’t take more than a few minutes to subside though.

In fact, the most difficult part was the breathing Olympics I found myself participating in! In the words of the neuroradiologist:

“When the scan starts I need you to take a slow deep breath like sucking porridge through a straw for about 25 seconds …”

Fabulous. Would be an easy task if I didn’t have asthma and the general lung function of an elderly person. Nonetheless, no images needed to be retaken, so thankfully my elderly lungs held out!

There was just time for a spot of myelogram gymnastics in the form of a quick roll poly onto my left side to obtain a comparison image. Oh, I forgot to mention, the LP needle was still in my spine at this point! Thankfully, there was a radiology nurse to stop me rolling the wrong way and lodging the needle permanently into my spinal cord!

By the time they removed the needle and shuffled me back to my hospital bed, I was already feeling headachy …

Back on the ward …

It was 2 hours of lying flat paired with some below par paracetamol and a jug of tepid water to consume.

My discharge paperwork included the date for my follow up consultation. I mean another appointment? Excellent! I was worried I’d find myself with some free time! Although, probably should go easy on the sarcasm, especially when I saw the follow up will take place 8th June …

I suppose it would be a bit too much to be blessed with two fast paced appointments on the NHS!

May your symptoms always be believed!

Your favourite headache x

Come back next time for the post-procedure turn of events … it’s not one you want to miss!