I’ve never heard silence quite this loud: One final neuro appointment in Stoke

Hey! Hey!

It’s a pleasure to welcome you back to my borderline unbelievable CSF leak journey. I invite you to relive my latest, and last, neurology outpatient appointment at Stoke.

Yep, that’s correct, I am now officially London’s problem (lucky them!), but more on that little gem later! For now, let’s focus on the series of unfortunate events that made up the appointment.

Obviously, with dad accompanying me to the appointment we bagged ourself a car parking space at least an hour before my scheduled appointment time. I say scheduled because for anyone who has followed this journey you will be well aware that punctuality is not my neurologist’s specialty. Thankfully, his medical knowledge makes up for the lack of time keeping!

Now, there is nothing that gives me greater inner peace than smiling to all the judgemental looks from people (usually elderly) as I get out of the car having parked in a disabled pitch despite looking absolutely fine! Normally, I would be even smugger stepping out of the car with my overpriced iced coffee in hand, but unfortunately due to the off-the-scale nausea, this luxury had to be forfeited (I could almost hear my bank account breathing a sigh of relief!).

Car park drama out of the way, we checked in and made our way to the all-too-familiar outpatients 3 department. Having been under this neurologist for 7+ years, I have grown to accept that a 9:15 appointment will absolutely not commence at 9:15. If I recall correctly, his personal record for lateness (when I have had an appointment) is 2.5 hours. Bearing all of this in mind, you can imagine the absolute surprise on my face when he walked into the department at 8:59am!

I was called by a HCA for the usual routine of height, weight, blood pressure, pulse and oxygen levels (SATs). These were all reported as the usual, and we were moved to a sub-waiting area just down the corridor. Having said a quick hello to my favourite familiar face in passing, we continued to wait to be called in.

I believe it was about 9:50ish we were called in, so as far as timekeeping goes, this was an outstanding effort by my neurologist (again, can’t say it enough times how much we love him). I explained the usual of how things hadn’t changed, I felt rubbish and continued to struggle. I also recalled all the symptoms which he confirmed were literally the same as 20 months ago when it all began.

I was subjected to another lying and standing blood pressure whilst my dad explained that we had been to dee another neurologist at the Royal Free in London. Surprisingly, he was really pleased to hear this (again, if you’ve followed the whole journey you will be aware of the guilt I experienced at the idea of seeing another neurologist). It also took me by surprise to hear how highly he spoke of the consultant we sought an alternative opinion from!

After agreeing to send all of my MRI and CT scans over to them, I asked about the severe nausea I was experiencing and explained the difficulty I was having getting gastro to believe it is a result of the headache disorder and not imaginary or self-inflicted. Whilst he was happy to write to gastro and state he believes the nausea is a result of the headache disorder, he did continue to explain that he doesn’t know how to reduce it. I mean thanks for the honesty, I think, but in the spirit of being honest, that comment doesn’t really help me!

Glad to have cleared that issue up (I hope there’s enough sarcasm oozing out of that), I began to feel my eyes filling up. Despite being unexplainably grateful for everything he has done for me, it didn’t change the fact that I was still having to deal with an array of debilitating symptoms on a daily basis with no plan of how anybody is going to approach managing them, let alone treating them.

Once more, in the spirit of being honest and frank, he sat back in his chair and said “I don’t actually know how to manage you know Lucy.” I mean, yay me for being so rare that even an internationally recognised headache specialist is stumped! This was followed up with “We have tried to manage the symptoms, but we clearly are not doing a very good job!” What I wanted to say was “nope, I think I’d be inclined to agree with you that they are not being well managed,” but what I instead said was nothing.

Whilst he may be done with me as a patient (to be fair I think deep down he was secretly glad), he did insist that if there were any treatments the London team decide on that they have capacity to administer at Stoke then he would do so to save me having to travel down to London each time. He also insisted on wanting to know the outcomes of the transfer to London because it may be able to help somebody in the future. He also clarified that I would continue receiving the botox injections every 3 months with the headache nurses for my pre-existing headache disorder so remain his patient, but won’t have regular appointments with him.

I left not really knowing how to feel. Whilst I have always spoken so highly of him as a neurologist, I couldn’t help but now feel very alone. London is not exactly on the doorstep, and definitely not somewhere I can just pop down to, yet is now solely responsible for any procedures (diagnostic or treatment) I will undergo.

I don’t know what the next steps will be from here, but assume it will be a case of waiting until all of the scans make their way to my new neurologist. However, as I keep saying, the waiting process doesn’t affect anybody other than me because I’m the only one dealing with the debilitating symptoms on a daily basis.

It could only happen to me …

X O X O,

Your favourite headache!

Next time ~ Hospital 101

I’ve never heard silence quite this loud ~ The story of us, Taylor Swift, Speak Now (Taylor’s version)