Robert Edwards

It took six months for my CSF leak to be diagnosed, but given what had happened in those six months, this was still an inspired diagnosis given the issues fellow leakers have witnessed in being diagnosed. For me it all began at the end of 2016, quite probably with just a big sneeze!

I’d had a very, very bad cold which progressed to my chest and as January 2017 arrived I found every time I coughed or sneezed I got an intense, but transient headache. These headaches progressively got worse, not helped by a few hours at the end of January spent out in the cold on Tring reservoirs doing some bird watching. After that my hearing suffered and the headaches got worse so this prompted my first visit to my GP. Possible sinusitis was diagnosed but after two weeks of anti-biotic medications during February 2017 the headaches remained, although thankfully the worst of my hearing issues went away.

I thought all would get better with some late winter sun and so we spent a week in the Caribbean, but unfortunately the headaches just became stronger and more frequent, and this was when I started having to take regular painkillers to try to ease the pain. There seemed to be no particular pattern to the headaches, nor did they always dissipate when I lied down, although at that time I had no idea of the importance of this. That said, the relevance of this question was never raised by anybody.

Back in the UK I was referred to a neurologist who arranged for an MRI scan, and perhaps stupidly within a couple of hours of the scan, I was ignoring numerous “no caller ID” calls to my mobile. The next morning I had a message from my neurologist saying he’d been calling and asking me urgently to make contact. At this stage I was getting pretty agitated!

Whilst I was trying to find the right number, my neurologist called again and this time I obviously took the call. As he put it, the good news was that I didn’t have a brain tumour – but the bad news was that I’d had a massive subdural haematoma. I was actually taking some blood thinner medication at this time which undoubtedly aggravated the bleed. I came off these immediately. The MRI scan showed the blood to be 1cm deep and the bleed was across my entire brain. Thankfully the neurologist was confident the worst had passed and referred me to a neuro-surgeon given there appeared to be a choice between draining the blood (a burr hole procedure) or letting it be reabsorbed over time. At least we all thought we knew why I was getting headaches.

I agreed with my neuro-surgeon that an operation was the better option and so at the end of April I had the burr hole procedure to drain the blood. There was always a risk that the recovery from this could trigger a further bleed, and a subsequent MRI confirmed that has in fact happened. My headaches had returned within a few days of the operation so I had feared the worst. So I had a second burr hole operation – which then lead to a third bleed… At this stage I decided that I did not want any more operations and I would let the bleed be reabsorbed. All this time I was still getting headaches every day and I was taking various painkillers including codeine and oromorph. I was able to get out and about during the day, but mornings and evenings were terrible, with my spending several hours resting. We were now in June 2017, and follow up CT scans and MRI scans were showing the haematoma wasn’t being reabsorbed at the rate expected and my neuro-surgeon took a fresh look at all the evidence, including the fact that my headaches started before the first haematoma. He then diagnosed that in all likelihood I’d had a spontaneous CSF leak.

It was a relief to know exactly what my medical problem was, but this soon turned to concern as I read up about the condition, and read online about fellow leakers’ experiences. I was settling in to a regime of headaches and now knowing that lying down should get rid of them, I could start to manage the pain. I was on steroids for a short while but I reduced the dosage and soon came off these totally given the risks, but equally I decided to avoid the opiate based painkillers, relying only on standard headache painkillers. They couldn’t get rid of the headaches but with resting, they could allow me to get out and about in the middle of the day without any nasty headache. All I now take is a low dosage beta blocker. There was always a “feeling” in my head which I was learning to live with and using to recognise when a headache was going to start.

Certainly my intense headaches started soon after I got up in the morning, and rest for maybe an hour after breakfast often reduced these to a tolerable level for several hours. It was usually early evening that the headaches returned, this time more at the back of the neck and aggravated by movement of the head and spine. As ever, resting eased the pain, but only for an hour or so. It meant that I simply couldn’t go out in the evening unless it was somewhere with a bed to lie on close to hand. We live outside London but often travelled in to see my two daughters and friends who live there. This travelling had stopped earlier in the year and remained impossible, as it still is now.

We had to cancel all holidays since I was advised it was unsafe to fly with the remaining haematoma, even if somehow I could manage the pain in transit.

The hunt was now on for the source of the leak, and over the summer months I had two full head and spine MRI scans and a CT myelogram, but the leak could not be found.

A possible blood patch had been discussed earlier in the year but given I had quite a lot of blood under the dura because of the three haematomae, the emphasis was on trying to find the leak for surgery. Over time as the options for finding the leak were running out, we decided to go for a blood patch and I had my first one last November. This gave short term immediate relief from the low pressure headaches (as did the CT myelogram), and I was able to go on a barging holiday and drive to see friends. But after two and a half weeks, the low pressure headaches returned, and with them my usual daily routine. I arranged a second blood patch for February. Amazingly in January the headaches totally went away for a couple of weeks and I was considering cancelling the second blood patch, but the headaches returned, and with them my restricted social life.

As I write this I’ve just had my second blood patch, but it’s only been a week and in the evening I’m starting to get what I think are low pressure headaches once again. I am hoping that after several blood patches I may be healed, but time will tell.

One piece of good news is that the last haematoma has now all but gone and so I can fly again, although I’ve not tested this yet. At the moment our foreign holidays are cruises which start and end in the UK, and it’s weird, but as soon as I leave the UK heading south, my headaches improve hugely – only to return as I approach the UK again. I cannot tell if this is a change of lifestyle or some aspect of latitude. Maybe this will become clearer as I travel more in 2018!

Until then I live with the headaches, knowing that for many people they are an awful lot worse.