My Brain Tumour Story
My Pituitary Adenoma (circled)
Headaches, we all get them now and again. I had been suffering from them for years and in mid-2017 I suffered from a rather scary episode which felt like a stroke and migraine all in one whilst driving. My wife had just completed the Race For Life in Folkestone and we were on the way home when I started to experience a loss of feeling in the right side of my face. This then seemed to spread to my right arm and right leg. I really panicked and had to pull over to the side of the road. Luckily this episode was very short-lived and we continued on the way home. Later that day, the sensation returned with an accompanying headache so my wife called 999 and an ambulance crew was dispatched to me. They believed the symptoms to be of a stroke-like nature and decided it was best to rush me to A&E at William Harvey Hospital, Ashford, Kent.
They performed some tests in hospital and it was deemed that I had suffered from what is called a Hemiplegic Migraine. These types of migraine cause stroke-like weakness/paralysis in one side of your face and body but don’t always come with the head pain. I was discharged and told to speak to my GP who then referred me to a neurologist at Queen Elizabeth Queen Mother Hospital (QEQM) in Margate, Kent. This neurologist ordered MRI and CT scans to be done as a routine check. These scans discovered that I had a reasonably small 11mm wide tumour growing on my pituitary gland which could have been the cause of my headaches. Apparently, this was nothing to be worried about and I was prescribed pizotifen tablets to be taken every evening. These tablets seemed to keep the headaches at bay to a degree and as the tumour was growing on my pituitary gland, I was referred to an Endocrinologist at the same hospital.
For those that don’t know, the pituitary gland is often called the ‘master gland’ as it receives messages from the hypothalamus in your brain and then it tells all other hormone glands what to do and how much of their hormone to excrete. So when there is an issue with the pituitary gland, it can cause all sorts of issues throughout your whole body.
When I got to meet my new endocrinologist, Dr Joseph, he ordered a variety of blood tests along with CT, MRI, MRA & MRV tests. These tests revealed that the tumour was causing some hormonal changes and I was prescribed a hormonal replacement injection called Nebido to help regulate these changes. My main complaint (along with the headaches) was a drop in my energy levels making me very tired by mid-afternoon to such a degree that I had trouble keeping awake some days. The injection itself started off being every 12 weeks and with regular blood tests was eventually dropped to 10 weekly as it remains now.
In November 2019 my endocrinologist ordered more MRI and CT tests and bloods. These scans showed that the tumour had grown to 14mm wide and Dr Joseph was concerned about the rate that it was growing and referred me to the specialist Neurology team at Kings College Hospital, London. As is the norm with our NHS, I didn't get to see the Neurologist at Kings College until February 2020. Ms Maratos, the Neurosurgeon explained to me that as the tumour was growing at such a rate and seemed to be pressing on my optic nerve, they wanted to schedule me in to have the tumour removed within a few months as routine surgery. She also ordered visual field tests to be performed to determine the degree of impact the tumour was having on my vision. Ms Maratos and her team spent quite some time with me explaining what they planned to do, how the operation would work and how the recovery stage normally goes.
A few weeks later I went to William Harvey Hospital (WHH) in Ashford, Kent to have the visual field tests performed which showed that I had a small blind spot in my left eye due to the tumour but nothing urgently impacting my vision as I hadn’t noticed anything myself.
Fast forward to Friday 24th April 2020 and I had a bad headache which I treated as normal using over the counter migraine tablets, drinking plenty of water and then I went to bed just before midnight still with the headache. Around 3 am on that Saturday I awoke with a pain on the left side of my head which I can only explain as if someone had walked into our bedroom and hit me over the head with an axe. It was instant and the most pain I had ever experienced in my head! (I must explain here that I suffer from chronic pain in my lower spine and legs from another condition but this pain was something else)
I got up, got dressed and went downstairs to take medication and water.
Over the next few hours, the pain did not ease at all, it was affecting the whole left side of my head and the vision in my left eye was blurry. I really could not cope with the pain and both my wife and stepson were very concerned about me. I had reservations about calling 999 due to the Covid-19 situation but my stepson made the call. The ambulance crew arrived, performed some checks on me and were initially sure that the headache was caused by my diabetes. My wife and stepson had to convince them that it was down to my brain tumour and even had to get a recent letter from my neurologist at Kings College Hospital to prove that I had a tumour for them to then make the decision to take me to the A&E department as a matter of urgency.
Once I was at WHH they took bloods and performed both CT and MRI scans before admitting me to the Acute Medical Unit for follow up tests and consultations between the local endocrinologists and the endocrinologist and neurology teams at Kings College hospital. Oh, and a few Covid-19 swabs to ensure that I was clear of the virus.
The endocrinologist at WHH stated that the CT & MRI scans showed that the tumour had grown to 16mm and was bleeding into my brain which was likely to have been the cause of the sudden and violent onset of the headache. I was kept at WHH until the evening of Friday 1st May when I was transferred to the David Marsden ward at Kings College Hospital in London.
The one thing that really scared me during this week was that I was losing the vision in my left eye, with the blind spot enlarging day by day.
On Saturday 2nd May I met with my Neurosurgeon, Mr Sinan Barazi, who sat with me for roughly an hour and explained exactly how he and another neurosurgeon would perform the operation and stated that he was, along with his colleagues from St Thomas’ Hospital were writing a study on the type of tumour that I had (pituitary adenoma). I instantly gave him full permission to use all evidence from my case in their studies to help others with this type of brain tumour. Mr Barazi asked a lot of background questions which raised some questions from me. He asked about the slight drooping of my left eyelid which I had had for roughly 20 years and it also made me realise that it had been about the same amount of time that I had experienced a noticeable reduction of colour brightness in my left eye (if I closed my right eye, everything was greyer and not as bright as if I did the same with my left eye closed). This he stated, could have been when the tumour started having an effect on my body and vision in particular. He explained that the tumour had then grown to 18mm wide and was significantly impacting on my optic nerve which was causing a significant and possibly permanent risk to my vision, hence they wanted to remove it the following day.
After the meeting with Mr Barazi, I felt so much better with the future outlook and felt so at ease in regards to having this brain surgery. During this day I had more blood tests and a late-night MRI. The surgery was scheduled for 0800 on Sunday 3rd May.
Sunday morning came and I had to have a shower using a special disinfectant soap scrub to ensure that I went into the operating theatre carrying no germs etc. The theatre porter arrived to take me down at 0830 and once at the operating theatre, I met the whole team who would be there throughout and had a chat with the anaesthetist who explained her role in the surgery and how she would have to insert even more cannulas into my wrists (the most painful kind). One of the surgeons asked me to explain in my own words what I was having done and he then told me that the MRI scan I had the previous evening showed that the tumour had grown to 20mm wide (as in the photo above) and was having a major impact on my optic nerve. I then transferred to the operation table, had all of the heart rate monitor pads and the ‘oxygen’ mask placed over my face and told to take some big breaths. (I do love that trick with the initial anaesthetic gas).
*Surgery details follow in the next paragraph, skip if easily disturbed*
Whilst I was under general anaesthetic, the neurosurgeons Mr Barazi and Ms Maratos performed an “Endoscopic trans-sphenoidal debulking of suprasellar lesion (pituitary apoplexy) with abdominal fat graft”. This involved using tools up each nostril to access the sinus cavity then cutting a hole through my skull to access the base of my brain and the pituitary gland where the tumour was. They then scraped the tumour from my pituitary, taking extra special care not to remove any of the gland itself (this often happens as the tumour looks like part of the gland), then extracting the tumour back out through my nostrils. Once it had been entirely removed, they then had to make an incision in my belly and extract a portion of fat which they then moulded, shaped and used to replace the section of the skull they removed to get to the tumour. Over time this fat solidifies and protects my brain from infection as the skull usually would.
The surgery itself took just over an hour and when I awoke in the recovery ward I was instantly surprised to see, literally see. The vision had returned to my left eye! A little fuzzy but I could see. I cried happy tears and exclaimed my happiness to everyone who would listen (I was still high from the anaesthetic at this time). The neurosurgeons came in to check on me as they were just leaving (both had bicycle helmets on ready to jump on their bikes and go home). When I told Mr Barazi that I could see already, he was surprised as he said it usually takes the optic nerve some time to recover from being compressed and vision to return. After a brief period of time, I was transferred back to David Marsden ward and given water and offered food. I was so excited to be able to see that I asked for my phone from my bedside locker so that I could call my wife with the good news and posted on Facebook that the surgery was successful and that I was starting my road to recovery.
The next three days were filled with post-operative medications, lots of blood tests, fluid balance sheets (measuring fluid amount in and out) and observations being taken every few hours, day and night. The headache had gone along with the operation but was replaced by the post-surgery pain which is best described as having been punched in the face by the Hulk. With this different type of pain came a different way of managing it. Whilst I had the severe headache/migraine I was being allowed oral morphine every few hours which really was needed. After the surgery, the pain was facial and not as bad so I was just on my usual pain meds plus some extra paracetamol. The operation had caused my pituitary gland to go a little haywire and I had to have a couple of insulin injections due to my blood sugar levels going sky high on a few occasions. I also had to have another injection a number of times to help control my waterworks as I was peeing out more than I was drinking which was then causing all sorts of vitamin and mineral levels to be out of balance in my body (hence the importance of the fluid balance sheets).
By Wednesday 6th May both the surgical team and the endocrinology team were happy enough for me to go home and spend the next six to eight weeks recovering in the comfort of my own home with the support of my wife.
I feel so much better than when I was taken in. My vision has fully returned along with the full-colour spectrum in my left eye for the first time in years! Both the endocrinologists and neurosurgeons did state that due to the tumour being on my pituitary gland, I was to expect some hormone imbalances whilst I recover. This has been true so far. I have noticed a distinct difficulty in concentration and energy levels. I cannot concentrate on anything for long and am having to take regular naps to get through the day. Oh and don’t get me started on emotions! If I see anything a little upsetting in a tv show, I can’t help but cry. I have a number of follow up appointments along with blood tests and scans to ensure that the tumour doesn't return and to make sure that my hormones are kept in check. At the moment I have to take supplementary hydrocortisone and may have to take other tablets to keep me balanced but that's all in the future.
The moral of my story is if you are suffering from migraines or very bad headaches, please get checked out. Go see your GP or if it's a particularly bad one, go to your local hospital. There could be something very serious causing the pain. If the amazing NHS endocrinologists and neurologists hadn't spotted, diagnosed and ultimately operated on me, I would have lost my vision or even worse as the tumour had continued to grow.