Another CSF Specialist: How is it in London?

Hey! Hey!

Welcome back to the present day. I hope you enjoyed (and survived) the flashback entry, but for now we are back to dealing with the spinal fluid leak. The appointment I mentioned at the end of CSF Leak vs the NHS was now upon us, but I was adamant I was keeping my expectations low. That way then the disappointment I felt was inevitable would be more tolerable.

CSF Leak vs commuting to London

We had to be at the hospital in London for 12:00, so I had booked a train that left Birmingham at about 8:45am. Factoring in that this appointment was costing my £300, I took every opportunity to do the rest of the day on the cheap. This meant traveling from Birmingham Moor Street rather than Birmingham New Street, and arriving at Marylebone rather the Euston when we got to London.

My insanely rubbish timekeeping was counteracted by my dad’s need to be insanely early for everything. Needless to say we were in Birmingham with plenty of time to spare. In my dad’s world, this meant we would collect our tickets and sit at the station so that we didn’t miss out train. In my world, this meant there was time to trek part way across town to secure a Starbucks for the trip.

Starbucks secured and a minor panic that I’d trapped myself in the bathroom diffused, we headed back to Moor Street station with what I regarded as still plenty of time to spare. Clearly disagreeing with me, dad started to fuss when he saw a train at our platform labeled London Marylebone and ushered me on board. This was all good until the train began to move and it was still only 8:30 … 15 minutes before our train was due to depart.

Yep, we were indeed on the wrong train. I mean technically it was the right train because we would arrive at the same destination, but it would arrive at the destination before the off peak tickets had kicked in. Keen to simply play dumb, dad was insistent it wouldn’t make a difference (can you tell he doesn’t use public transport much?).

The CSF leak was really making itself known now and we were still only somewhere around 9:00am. I repeatedly reminded dad that I had a headache and my head hurt. Just in case he had any doubts about my pain levels! Pretty confident the whole carriage was aware of my headache, an announcement was made over the speaker system of the closure of Marylebone station. This had to be some sort of Karma for trying to get to London on the cheap!

Stranded in somewhere that went by the name of West Ruislip, I was starting to feel quite unwell. My pain levels were continuing to increase and now we had to squish onto a tube for a journey that we were told would take about 40 minutes. The combination of lack of seats, the beyond unsmooth journey and the humid air sent me feeling like I was going to pass out. As soon as I could get off the tube, I did so!

Making it to the hospital

My headache was in desperate need of some fresh air, so we hopped off the tube at Oxford Circus and emerged into the open. From here is was a 15ish minute walk to the hospital, but with my headache and dad’s bad knee it took closer to 25 minutes. Worried we were not actually going to make it to the hospital in time, we picked up the pace and headed to the appropriate floor.

Upon arrival, we were greeted with the you are paying for this service smile from the lady behind the reception and asked to complete some paperwork. She also warned me that the consultant I had booked to see was running approximately 45 minutes late. Now, when the appointment was booked I received the terms and conditions which included a line that read there will be a charge of £75 per 15 minutes that the consultation runs over the allotted 30 minute time slot. So, upon hearing he was running 45 minutes behind, I could help but respond with I will deduct £75 for every 15 minutes past my allotted appointment time.

I thought I was hilarious, nobody else did! I also didn’t get a deduction on the appointment fees.

Pain, expense and promises …

As I mentioned in my previous post, this appointment was with a neurosurgeon, not a neurologist, and he seemed like a good consultant. However, something was telling me deep in my gut that the fact I was paying for the appointment might have been an influencing factor on this.

Anyway, he listened to everything I had to say as I explained the events of the almost 12 month saga from initial symptoms to now. He was in agreement that my symptoms were strongly indicative of a spontaneous spinal CSF leak, but like I was already aware, the imaging was inconclusive.

At this point, my internal monologue was reminding me I was currently spending £300 to be told everything I already know.

He went on to explain that all of my imaging (they were missing some sets of scans) would need to be reviewed at their NHS MDT which would include the neuroradiologists and consultant neurologists who are part of their CSF Leak team. Being a frequent name at MDT discussions, I had already expected this to be the case. However, he assured me that if they were all in agreement then they would not only be happy to treat me, but also expedite any necessary procedures due to the significant impact this condition was having on my professional and personal life.

Pretended I didn’t already possess a PhD worthy knowledge of CSF leaks, I asked what the next steps would be medically if they felt they could help my case. He explained that based on the information he has, he believes my leak is most likely a type 3 leak which is known as a CSF venous fistula. Basically, the cerebrospinal fluid is leaking out through a vein somewhere within my spinal column. My research had already informed me that this type of leak is the most challenging to find, but when they do find it, it is the easiest to fix. Unfortunately, due to the complexity of locating this type of leak (there are 52 possible locations), he informed me that it can take up to 5 myelograms before they achieve success. This means 5 more sets of needles stabbed into my lower spine …

This was the point where I stopped seeing him as a nice consultant and started to have doubts creep in. Being a lifelong medical anomaly, if anybody was going to take 5 attempts to locate the leak then it would be me. However, I couldn’t fight the niggling thought that if it was as simple as just continuing to put needles into my spine then they would have taken this approach at Stoke.

Again, not wanting to become lost in the system, I asked about likely time frames for all of this. He explained that their next MDT would be the second week of January due to the Christmas break. As we were in mid December now, I wasn’t too phased or surprised by this. Then he explained that following the MDT I would be contacted around the end of January with an outcome and as long as they were in agreement would have an appointment some point in February for the necessary myelogram to be completed.

Post appointment debrief …

I don’t know. The second we set foot outside the hospital the first words to leave my mouth were “did you not think that was all a bit too good to be true?” Call me a pessimist, but I couldn’t fight that knot in my gut that was telling me all those promises had only been made because I was spending a significant amount of money on the appointment. I couldn’t fight the fact that I truly believed that if it was as straightforward as he said, they would have continued to put needles into my spine at Stoke.

I guess only time would tell!

It could only happen to me!

X O X O,

Your favourite headache!

Next time ~ Was it really all too good to be true?

How is it in London? ~ Message in a bottle, Taylor Swift, Red (from the vault)