New member, my story

[member_42793]

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!

[Pat]

Wow! thanks Karl for sharing this with us all here - I hope its been of help to get this down.

In reassurance, we have patients in their 80s and 90s who had their surgery many years ago. Mine was 30 years this month!

I hope you continue to recover and if you would like to, I can publish what you've written in our magazine, Pituitary Life. Just let me know on
pat@pituitary.org.uk

We have a post op fact sheet which might be of help and I can email you this over if you want.
take care

[member_41389]

Hi Karl
Just to say kep going - but don't start back at work too soon. I had surgery on June 6th and I found that the post-op bit took a lot longer to settle down than I expected. Your pituitary just got beaten up by a guy and it can take a while to get over it. I admit it probably didn't help that I'm 65 and so rather more mature than you (a polite way of saying old!).
Your Neurosurgeon and Endocrinologist will review your progress - the surgeon probably 3 months post-op - the Endocrinologist probably sooner. The schedule will depend on what supplementation you needed before surgery and any changes that happen as a result of the operation. Everyone is different over that and it can take time to work out. I think I've have had more blood tests in the last couple of months than in the previous decade!
Hope you progress quickly and can get on with things soon.

Tim

[member_42793]

Thanks Pat, thanks Tim.

I must admit I am already quite surprised at how much the op has taken out of me. Just cimpleting the smallest tasks seems to completely tire me out for the rest of the day.

Sleeping is a real pain, I've always been a head hits the pillow and I'm gone person, but it's taking me hours to get to sleep, so mornings are a real struggle at the moment. I've been told lavender can help? So I'll give it a go.

I'm going to try not to rush back to work, but I'm not very good at doing very little, I'll have to find another pastime to keep me busy.

Thanks again

Karl

Ps 65 is not old, or so my Dad keeps telling me.

[Mgh]

Karl
Well done for sharing your recent pituitary experience. I recognise much of what you have been through although the aftermath differs so much from one person to another. I don't know if age is a factor. For me the diagnosis and surgery came a few months before my 59th birthday but in hindsight I realise that I had symptoms for at least 10 years.
Like Tim, I would say do not rush back to full-time work. Give yourself time to adjust to your changed daily regime of medication, activity and rest. Getting the replacement medication right and learning how best to manage yourself is important. When you feel well enough perhaps going back part-time might help with the adjustment.
I don't know if you have contacted the pituitary nurse Alison on the helpline. Her knowledge and understanding has helped me greatly over the years. The local Pituitary Foundation group and the conferences have also been very informative and supportive to me and my husband especially because so few people outside the pituitary world have any understanding of the intricacies of pituitary conditions.
Wishing you all the best.

[Carl]

HI Karl

Keep going, it is tough initially, but it gets better. I had my operation in May 2013 also in Southampton, Mr Mathad the Neurosurgeon. Getting over the initial operation and the stress of that is probably hitting you hard and as you are not producing enough Cortisol and taking Hydrocortisone to replace it, then probably it will take a little while to settle - along with your other hormones that are out of kilter. With a tumour that has slowly but surely been growing and disrupting normal function for so long, it will take your body to get back on its feet.

It is an individual journey for everyone. Keep us posted on progress

Cheers, Carl

[member_42793]

Thanks for the advise, really appreciate it.

I think will call Alison, as I still have a lot of questions unanswered. Top of the pile is why they put me on double the medication dose when I was discharged from hospital, compared to when I was admitted. Seems strange and I was not given an explanation as to why either.

Mr Mathad is my consultant also Carl, very calm chap and a man of few words.

On a side note, I have been known to like the odd alcoholic beverage from time to time, but I've not had a lick since a few days before I was admitted. Are there any guidelines on when it is ok to consume alcohol again, and I'm talking about a couple, not an all day beer garden job.

[Pat]

Hi Karl

re alcohol - this is from our Pituitary Gland; Its hormones & Conditions booklet - 'There is no interaction between alcohol and
most replacement hormones and you are allowed to drink in moderation, such as the national guidelines'

Alison is on her shifts on Monday 10am - 1pm & 6pm to 9pm - she'll be a great help

[Carl]

PS. I think it is standard to raise Hydrocortisone dosage for a while after the operation. It happened with me and after a month or so I was reduced back to my normal dosage, which for me is 10-5-5mg at breakfast, lunch and tea time.

[member_42793]

Thanks Carl that's really helpful.

My normal dosage is also 10/5/5, currently 20/10/10, that's put me at ease somewhat.

I will give Alison a call. Thanks again everyone.