Edited by Sarah Cornell, Tuesday, 5 May 2015, 09:50
This'll be a very long one, but it will let you know the story so far.
I should start at the beginning. But it's difficult to know where the beginning is. It may well have been when I got my first migraine, aged 19 or 20. It could even be well before that.
So we'll start with a more recent beginning.
Very end of January 2015. A migraine that was not particularly more painful than those that had come before, but kept on, and on, and on. A few days after it started, my right eye began to ache a lot, especially when I looked left. The headache started bilaterally - I've never really had the one-sidedness that's common with migraines - but it migrated to be on the right side and around the eye. I visited the GP on day 7 - it was the first time a migraine had gone to a week (and usually even if they went on 5 or 6 days, they were clearly fading out by then), and the eye stuff was just weird. The quite reasonable conclusion at this stage, after a look in the eyes and a few simple checks, was that I had had a migraine that was just unlike those I'd had before. The headache went away after 10 days, though the eye pain lasted a few more days, but then it was all over.
Late February 2015. Routine eye test. I told my optician about the above, and he thought it might be vision related. He determined that I needed reading glasses in addition to my normal glasses - I am, perhaps, very slightly young to get such things, but only very slightly. You may well know that my eyes - particular the right - have always been dodgy, so getting my old-age reading glasses early was no great surprise.
7th April 2015. Travelling home from work (on the tube) I was aware my head was aching a bit. I sensibly took some painkillers, but it was when I stood up that I realised this was another Big Headache. A couple of days off work, topping up on the painkillers - much like a normal migraine, until the eye pain started again.
Off to the GP, who thought this was odd to have a second strange migraine; by this time I'd also noticed - and remembered to mention - that my pupils were different sizes. That doesn't have to be a sign of anything - apparently about 20% of people who have different size pupils have always had that, they've just never noticed! Standard blood tests ordered as a starting point, though, on the assumption that something was causing this, we just needed to work out what.
Before coming home after the appointment, I thought I'd drop in on my optician - who was more than happy to take another look at my eyes. My right eye was definitely misbehaving - covered my left eye, asked me to read the chart, and I could manage the top three rows. 10 seconds later, I could read the entire chart, like normal (with glasses, obviously; without glasses, I'd never even get the first letter!) My right eye was able to focus, just in it's own time.
I remembered again to mention the pupils being different sizes. That's when things changed. Several tests later, an ophthalmologist was recommended - from the list of those available at the local hospital, three were specifically recommended (my employer gives me private health cover, for which right now I am extremely grateful!) I phoned the hospital, made the appointment, and rang back the optician's office to say they could address the referral letter to Mr X, who I was seeing on the 27th.
I think it took less than 20 minutes for my optician to ring me back. No, he said, you do not wait until the 27th. You phone the hospital, you find which ophthalmologist has the next available appointment, any of them, and you get there by whatever means (I'd gone for the first available late-ish afternoon appontment, so Lawrence could drive me there and back).
20th April, 11am, and I'm getting on the bus that goes from the end of my road to five minutes walk from the hospital. 12.30, and I'm in with the ophthalmologist. It starts routinely, but after a while I could tell something had changed. He was interested. Now, it's not like you want your doctor to be interested in you - that means it's not something boring and routine - but it does mean they aren't going to let go until they've worked something out.
There were two blood tests ordered - one to rule out thyroid eye disease, one to rule out myasthenia gravis, both of which didn't quite fit but seemed far more likely than his favoured diagnosis of the extremely rare ophthalmoplegic migraine. This is ludicrously uncommon - 0.7 per million people per year! - but it seemed to fit everything. Of course, just to be on the safe side, we'll do an MRI of brain and orbits as well.
At the MRI, I was told to expect the results to get to my consultant in about four days. Except it only two and a bit days until he phoned me, at 7.40pm on Friday night. He'd got the report from my scan, although not the images, and he was very sorry to tell me that there was a tumour in the skull base. His next task was to phone the on-call neurosurgeon at Addenbrookes to find out what happens next - he's an ophthalmologist, this is beyond his area of expertise!
I put the phone down. Some swearing ensued. Dinner - which the oven timer announced had just finished cooking as the phone rang - ended up in the bin.
An hour later, he got back to me - he'd spent about half of that time hitting re-dial to get through to the person he needed to speak to! The procedure is that the case is reviewed by a multi-disciplinary team (MDT) who look at the case, work out what the problem is most likely to be, and then pick the best specialism/specialist. The team includes people like neurologists, neurosurgeons, oncologists, neuroradiologists, radiologists, and various other extremely clever types.
The ophthalmologist phoned me back on Saturday morning to tell me that the team had met and reviewed, and recommended a specific neurosurgeon. Who is currently on holiday, but is back on Thursday, and if I phone his secretary to make an appointment, I should be able to see him then.
Not that any of this is good, but it's somewhat reassuring that they haven't assessed me as 'get in to this hospital right now this second'.
Of course it's a bank holiday Monday as I write this, so I haven't actually been able to speak to the secretary yet. I've left a message and if she's not phoned me first thing tomorrow morning, I'll be phoning her. She should have all my details/reports/scans/etc emailed over already.
So there's not a lot for me to do. It's a case of trying to keep calm and carry on. With any luck, I'll have an update for you on Thursday of what we can expect to happen next...
How we got here...
This'll be a very long one, but it will let you know the story so far.
I should start at the beginning. But it's difficult to know where the beginning is. It may well have been when I got my first migraine, aged 19 or 20. It could even be well before that.
So we'll start with a more recent beginning.
Very end of January 2015. A migraine that was not particularly more painful than those that had come before, but kept on, and on, and on. A few days after it started, my right eye began to ache a lot, especially when I looked left. The headache started bilaterally - I've never really had the one-sidedness that's common with migraines - but it migrated to be on the right side and around the eye. I visited the GP on day 7 - it was the first time a migraine had gone to a week (and usually even if they went on 5 or 6 days, they were clearly fading out by then), and the eye stuff was just weird. The quite reasonable conclusion at this stage, after a look in the eyes and a few simple checks, was that I had had a migraine that was just unlike those I'd had before. The headache went away after 10 days, though the eye pain lasted a few more days, but then it was all over.
Late February 2015. Routine eye test. I told my optician about the above, and he thought it might be vision related. He determined that I needed reading glasses in addition to my normal glasses - I am, perhaps, very slightly young to get such things, but only very slightly. You may well know that my eyes - particular the right - have always been dodgy, so getting my old-age reading glasses early was no great surprise.
7th April 2015. Travelling home from work (on the tube) I was aware my head was aching a bit. I sensibly took some painkillers, but it was when I stood up that I realised this was another Big Headache. A couple of days off work, topping up on the painkillers - much like a normal migraine, until the eye pain started again.
Off to the GP, who thought this was odd to have a second strange migraine; by this time I'd also noticed - and remembered to mention - that my pupils were different sizes. That doesn't have to be a sign of anything - apparently about 20% of people who have different size pupils have always had that, they've just never noticed! Standard blood tests ordered as a starting point, though, on the assumption that something was causing this, we just needed to work out what.
Before coming home after the appointment, I thought I'd drop in on my optician - who was more than happy to take another look at my eyes. My right eye was definitely misbehaving - covered my left eye, asked me to read the chart, and I could manage the top three rows. 10 seconds later, I could read the entire chart, like normal (with glasses, obviously; without glasses, I'd never even get the first letter!) My right eye was able to focus, just in it's own time.
I remembered again to mention the pupils being different sizes. That's when things changed. Several tests later, an ophthalmologist was recommended - from the list of those available at the local hospital, three were specifically recommended (my employer gives me private health cover, for which right now I am extremely grateful!) I phoned the hospital, made the appointment, and rang back the optician's office to say they could address the referral letter to Mr X, who I was seeing on the 27th.
I think it took less than 20 minutes for my optician to ring me back. No, he said, you do not wait until the 27th. You phone the hospital, you find which ophthalmologist has the next available appointment, any of them, and you get there by whatever means (I'd gone for the first available late-ish afternoon appontment, so Lawrence could drive me there and back).
20th April, 11am, and I'm getting on the bus that goes from the end of my road to five minutes walk from the hospital. 12.30, and I'm in with the ophthalmologist. It starts routinely, but after a while I could tell something had changed. He was interested. Now, it's not like you want your doctor to be interested in you - that means it's not something boring and routine - but it does mean they aren't going to let go until they've worked something out.
There were two blood tests ordered - one to rule out thyroid eye disease, one to rule out myasthenia gravis, both of which didn't quite fit but seemed far more likely than his favoured diagnosis of the extremely rare ophthalmoplegic migraine. This is ludicrously uncommon - 0.7 per million people per year! - but it seemed to fit everything. Of course, just to be on the safe side, we'll do an MRI of brain and orbits as well.
At the MRI, I was told to expect the results to get to my consultant in about four days. Except it only two and a bit days until he phoned me, at 7.40pm on Friday night. He'd got the report from my scan, although not the images, and he was very sorry to tell me that there was a tumour in the skull base. His next task was to phone the on-call neurosurgeon at Addenbrookes to find out what happens next - he's an ophthalmologist, this is beyond his area of expertise!
I put the phone down. Some swearing ensued. Dinner - which the oven timer announced had just finished cooking as the phone rang - ended up in the bin.
An hour later, he got back to me - he'd spent about half of that time hitting re-dial to get through to the person he needed to speak to! The procedure is that the case is reviewed by a multi-disciplinary team (MDT) who look at the case, work out what the problem is most likely to be, and then pick the best specialism/specialist. The team includes people like neurologists, neurosurgeons, oncologists, neuroradiologists, radiologists, and various other extremely clever types.
The ophthalmologist phoned me back on Saturday morning to tell me that the team had met and reviewed, and recommended a specific neurosurgeon. Who is currently on holiday, but is back on Thursday, and if I phone his secretary to make an appointment, I should be able to see him then.
Not that any of this is good, but it's somewhat reassuring that they haven't assessed me as 'get in to this hospital right now this second'.
Of course it's a bank holiday Monday as I write this, so I haven't actually been able to speak to the secretary yet. I've left a message and if she's not phoned me first thing tomorrow morning, I'll be phoning her. She should have all my details/reports/scans/etc emailed over already.
So there's not a lot for me to do. It's a case of trying to keep calm and carry on. With any luck, I'll have an update for you on Thursday of what we can expect to happen next...