Hopefully I'm posting this in the correct place
Hello all
I'm new to the forum, but have used the forum and the website for advice and generally trying to put my mind at ease since I was diagnosed with a Pituitary Tumour this March, it's been very helpful for me, but not had the courage to join and indeed post, until now. Hopefully I can maybe help or answer any questions for anyone recently diagnosed and the first they've heard of the word pituitary is when they were diagnosed, because it hit me hard. Apologies as this will probably be quite a long read...
I had a fall in Janyary, well I actually passed out twice in a day, I have a history of heart Rythm irregularities, which was sorted a few years ago, but the hospital took one look at my notes and decided it just must be my heart and stuck a 3 day tape on me. Luckily my employers provide me with private medical insurance and off I went to see the cardiologist. This was the best thing to happen to me, as the cardiologist dug very deep into my life, and after telling him several times I struggle to get out of bed in the morning, feel quite depressed and generally feel useless, he insisted I have an MRi scan after reviewing some routine blood tests.
I was on my last day of holiday in Spain with my wife and some friends when I got a phone call from my cardiologist, who told me what they had found on the scan, unfortunately he mentioned the words "brain tumour" at which point everything else he said went straight out of the opposite ear and I instantly thought the worse. When I got home I went straight to see him and he sat me down and explained that it was a benign tumour around 4 cms in size and I had likely had it for 10 years, which blew my mind really, and he referred me to an endocrinologist back on the NHS, as I would get much better treatment, especially as it was likely I would need surgery.
To cut a long story short, my endocrinologist put me on Modified hydrocortisone, Levothyroxine and testosterone replacement gel, all of which I am still on now. He said I will need surgery but it would depend on how bad my eyesight is, on how quickly the operation would be organised. I had the visual field test which confirmed my right eye's visual field was not great in comparison to my left, a direct result of the tumour. It was agreed I would meet the neurosurgeon to discuss when, how, risks etc. In May this year I met my Neurosurgeon and he said he would put me on the list and the waiting list was around 4-6 weeks.
I had a pre op assessment fairly swiftly, but the 4-6 weeks passed, with no news. I chased and chased but this didn't help. In the time from March when I was diagnosed, I felt very alone & it was as if nobody around me understood what I was going through, the worry of losing my sight, being on medication I know nothing about and the thought of having pretty invasive surgery. I don't think I went a single day where I wouldn't think about my situation at least once every ten minutes, sleep became almost impossible.
On Wednesday 20th July, I woke up with blurred vision in my right eye and could see very little. At first I dismissed it as having something stuck in my eye, but after a few hours realised it wasn't causing me any discomfort and was not getting any better, so I called the eye hospital and got an appointment for the next day.
I went for the appointment and had lots of tests, one of which was my visual field test, which inevitably I failed miserably, so the eye doctor sent me for an urgent MRi. An hour later I was told my tumour had grown by half a centimetre which shocked me considering I'd had this for At least 10 years. I was transferred from Bournemouth Hospital to Southampton that night and arrived at midnight at the Neuro admissions ward and was straight away nil by mouth, officially now scared.
Eventually I managed to get to sleep, I had arrived to hospital and been transferred to Southampton alone, as I just thought I was seeing the eye doctor. When I woke up at 7:30 I was still nil by mouth. Eventually at 8:30 the neurosurgeon came and saw me. He said your first on the list, your going down now get ready. This was somewhat ironically not what I wanted at all, I'm not good in situations that I can't control and was always of the view that I would have a couple of weeks to prepare for my operation after getting a date, but I was given 30 mins. None of my family could get to me in time, as we live an hour away, I was petrified and I broke down on the spot.
Luckily the anaesthetist spotted my distress and he came over and talked to me. He was amazing and *almost* completely put me at ease, at least to a point where I could actually get prepared for surgery and reduce my heart rate by probably 100 beats a minute.
I had the surgery and woke in the recovery room, I was kept in there for around 3 hours as they were finding it pretty difficult to control my pain. The pain was bad, but my overriding emotion was total relief, it hurt like hell but I didn't care.
I spent 7 days in hospital in total, and I'm writing this recovering at home. In hospital the pain was largely ok, apart from I would get a couple of really bad headaches a day which required oral morphine to control, but gradually I didn't need the strong pain killers and by the time I was discharged I was taking 1000mg paracetamol 4 times a day. 12 days in and I'm down to just 1 sometimes 2 doses of 1000mg of paracetamol a day when in pain.
Sneezing has become more and more frequent, and although I keep my mouth open when sneezing, it is quite painful sneezing, not to mention not very attractive.
I'm also doing a nasal wash 4 times a day for 6 weeks. It's not pleasant & I can't wait for the 6 weeks to be up.
I'm signed off work until the middle of September but may go back before if I feel I've recovered enough.
I'm still taking the same medication, strangely they have doubled the hydrocortisone and Levothyroxine, which I wasn't expecting. I'm resigned to the fact I will be on that medication for life as the pituitary gland is so thin now that I've been told it's very unlikely to recover. I accept that, although still not fully sure what that means for me long term.
I'm feeling very positive and am always very aware that there are people who are in much worse situations than me, I guess I wanted to share my journey so far and use it as a way of self counselling if that makes sense, as probably the only people on the planet that can really relate to what I've been through in the last 5-6 months are the members on this forum and others suffering with pituitary conditions as well as professionals of all things pituitary.
Even if nobody reads this, it's helped me getting it all off my chest.
Cheers
Karl, 32 years young!