Wednesday, 28 May 2014

May 2014 - The anniversary of my Pituitary operation

I've been blogging about this topic for nearly a year now.....The 28th May 2013, a date I will never forget. The day an expert neurosurgeon put some Endoscopic surgery tools up my nose and into my brain to remove my Pituitary tumour. 

The Pituitary gland

My actual tumour

I suppose I could have gone one of two ways with all this, had the surgery and just got on with my life, or had the surgery and spent some time reflecting and blogging about the whole process and what I can actually get out of such a big event in my life. Obviously I did the latter, and I'm glad I did.

The surprising thing is that one year on, a lot of memories are still so strong - elements of my time in the run up to the operation and the stays in hospital that I remember so clearly. There are other elements that I've forgotten (or purposely blocked out) that suddenly pop back into my head for no apparent reason when I'm least expecting it.

I thought I'd take some time to capture a few thoughts about my tumour and list out the things that have come and gone (and a few that have stayed) along the way. In case any other Pituitary patients happen across this blog and have similar symptoms.

In terms of symptoms, I've been thinking of all the things I used to have that I haven't got now and indeed some of the things I have now, that I didn't used to have. Some more explainable than others, but I thought I'd list them out below in no particular order. If the changes I've noticed are really all down to having a pituitary tumour removed, it's amazing to think just how much of your body is controlled by this unassuming little gland the size of a pea.....

Things that stopped after the operation
Black eyes
Deb sometimes used to say it looked like someone had punched me in the face....she probably felt like doing so on many occasions! But I had these black lines from the corner of my eyes down underneath at a diagonal. I just assumed it was an ageing thing (like so many of my other symptoms) but they have largely disappeared. Don't know why

Muscle spasms in the morning
When I woke up, sometimes the muscles in my back and legs would spasm and lock solid, I'd go rigid as a board. It would take a few attempts before I could move. Again not sure what that was all about, but I don't get it now.

Hip ache
Another one I'm not sure of, I used to get bad hip ache whilst laying in bed....I don't now. We did get a new bed last year, so perhaps it is down to that.

Nearly fainting and sweating when exercising
This is more explainable. Because of my lack of Cortisol, I really struggled with my stamina and fitness and would just run out of juice when exerting myself. We would go out for walks, and I would have these unexplainable crashes where I would sweat a lot and feel dizzy and nearly faint. Needless to say, I don't have these now, although I do still have the odd energy crash - but I am much better at spotting when these are coming up (just before my due tablet dose normally) so a quick tablet, drink and food and I'm sorted. When my low Cortisol was first diagnosed, my GP said he couldn't understand how I was still going at all with such a low level in my body....I found that statement strange at the time, but I understand it a bit more now.

Funny vision
Again very explainable, the tumour was pressing on my optic nerve so the funny black spots in my vision that I could never quite pin down, if only I'd known that these were an early symptom. Shame the eye specialist I visited didn't spot the issue when I saw him. Eyesight is all normal now.

Pale complexion
As soon as my consultant saw me, he said I looked like the typical Pituitary patient, a pale complexion and thin face. The times people said to me "are you ok, you don't look very well" - of course I thought I was fine. Well now I have a much more colour in my cheeks and have put some weight on, so look (and feel) a lot more healthy.

Dry skin
Another feature of lack of hormones can be dry skin, which I certainly had. It is a lot better now, but still have some areas that need attention. Also for many years I had a patch of dermatitis/eczema on the top of my head which I couldn't get rid of, that disappeared within a couple of months of my operation....I can't think that it can have been for any other reason.

About 10-15 years ago I started getting hayfever, I never used to have it when I was young. All the normal symptoms, sneezing, itchy eyes, streaming nose & occasional coughing fits. Not bad hayfever by a lot of people's standards, but annoying enough. However, since the operation, it's gone. I really don't know why, either it is because my sinus passages have been rummaged around in during the surgery or having the right hormones in me has sorted me out. My working theory is the latter, because as the tumour kicked in over several years and put my hormone balance out of kilter, so the hayfever appeared - now they're sorted, it's gone. Who knows, but I'm glad it has gone!

Being cold
[added 29/05/2014] Forgot about this one! The final 6 months or so before the operation saw be being frequently cold, really feeling the cold like I'd turned 80 years old. This has gone now, and I think is down to having the correct hormones in my system, particularly Cortisol. Blooming good job too, it is much nicer being toasty all the time :-)

Mouth ulcers
[added 10/06/2014] Just thought of another one. When I bit the inside of my mouth, more often than not it would turn into an ulcer - painful little blighters...I probably had one a month before. Well, although I still bite the inside of my mouth every so often, I haven't had a single mouth ulcer since my operation, not one. My body must be producing efficient anti-ulcer hormones now.

Things that have changed since the operation
After I got better from my second stay in hospital I suddenly got a taste for a few different things, some of them revolved around sweet things such as fruit. To this day I enjoy fruit a lot more than I ever did...melons, oranges/satsumas, pineapples, grapes, mangos etc. along with Coke, lemonade and orange squash....All go down a treat. I also enjoy the odd alcoholic beverage more than I used to, particularly cider. Perhaps there is that fruit link again!

I had very 'ridged' fingernails before my operation, then afterwards there was a distinct line across all my fingernails where they suddenly started growing much more normally. They continue to do so to this day, as if I was lacking something before. They look much more healthy now and are less brittle.

As mentioned above, I've recently put some weight just under 11 stone (70kg) it is the heaviest I have been in a long time. After my second stay in hospital I was under 10 stone and it took quite some time to get back to my normal weight of 10.5 to 10.75 stone. It is the weight I have been for years and probably about right for my 5' 6" frame. I'm not panicking or going on a diet just yet, but I'll keep an eye on my weight, I like to think the weight gain is all muscle ;-)

Diabetes Insipidus
I haven't mentioned this for a while, as I think finally I am finally getting over the mental scar it left me with. I had it twice during my recovery and it was a result of my surgery. I think it has gone for good now, which is fine by me. Good riddance Diabetes Insipidus.

Lost sensation/tingly foot and leg
This isn't anything to do with my tumour or operation, but it is something I have now that I didn't have before. Tests are still ongoing, but I get the feeling there is nothing to be done except hope it will heal itself in time. It doesn't stop me doing anything, it is just a niggle that I wish wasn't there....

I never used to get cramp, but ever since my operation I have in my legs, toes, jaw and fingers/hands. Sometimes just my thumb would lock up whilst I was gripping something, or my calf muscle would lock solid in the middle of the night. I never appreciated just how painful a locked calf muscle could be, so cramped that I could stand on the leg and I couldn't push my foot back to a normal position. I've thought there were various reasons for this over the months, hormones, lack of exercise, lack of salts, dehydration etc. as the months have progressed I've discounted each one. No-one could give me a definitive answer, although Indian Tonic Water did seem to help, as it has Quinine in it (thanks to Jean the Portsmouth QA Endocrine nurse specialist for that tip). However, of late I have (on the advice of my consultant) upped the dose of my Testosterone and suddenly the bouts of cramp are all but gone. Could be a coincidence as I haven't changed anything else, I've been 3 or 4 weeks virtually cramp free and not drinking the tonic water.

Nervousness/making me jump
I used to be a bit of a bag of nerves, it was very easy to make me jump. I hadn't really thought about it lately, but it suddenly occurred to me that I'm not like it now. Presumably being pumped with the right hormones has put something straight.

Mucky nose
A result of the endoscopic nose surgery unfortunately. I do still get a mucky nose and a bad smell up the nose periodically, not badly - in fact it is better than it was - but something I'll probably put up with in the hope it will sort itself out. Probably if I got a referral to the ENT department the first thing they'd want to do is stick a camera up my nose to have a poke around....and that's what caused it in the first I'm thinking I'll avoid this if possible. As long as it doesn't get any worse it'll be fine.

[added 29/05/2014] I've always had quite fine lank hair. But for whatever reason, probably the Testosterone, my hair is thickening up now and getting some body to it. Strange really, with the male hormone installed I expected all my hair to fall out! In fact it looked like it was going to for the first couple of months on Testosterone, but it seems to be regrowing with vigour. I'd rather that way around than being a baldie!

So one year on, what gives?
So how do I feel after the last year? I think the best phrase/words I can come up with are "a hell of a lot better" and "lucky". I am lucky in that I eventually went to the doctors and got checked out, and that the tumour I had was benign and still of a size which could be removed without major permanent damage. There is also a certain amount of luck (or maybe fate) involved in the type of tumour I had, how big it had got and how I recovered from it. I have learned that there are many different types of tumour, each tumour can have different effects and even someone with the exact same type of macro adenoma that I had may not experience the same outcome as me. I have just two hormones deficient at the end of the process (Testosterone and Cortisol) whereas other people may have had no Pituitary function or full Pituitary function and anywhere in-between....depending on the success of the surgery and how their body healed. 

There is no luck element in the diagnosis and removal of the tumour, that was much more about skilled doctors practising evidence-based medicine at their very best. 

Dr Kar (Endocrinologist) in Portsmouth QA Hospital and Mr. Mathad (Neurosurgeon) in the Wessex Neuro Centre in Southampton UHS Hospital worked together as one team and, in order to protect my eyesight, only 10 days after the MRI scan that confirmed my tumour, it was removed. Amazing. (not forgetting the unseen NHS teams that support all this great work) 

(I can't emphasise this next bit strongly enough.....) Can you even imagine the skill needed to put endoscopic surgery tools up someone's nose through their sinuses & skull and into the base of their brain and extract a 3cm tumour to the point where virtually/totally none of it is left - doing all that whilst avoiding any damage to vital parts of the body such as carotid arteries, optic nerves and of course the Pituitary gland itself. It's mind-bogglingly incredible, that's what it is, my hat gets tipped in your direction Mr Mathad.

As for my health and fitness now, I take it a lot less for granted than I did. I spent a large chunk of my life being fit and healthy because of being young and being in a job that kept me fit (Postman) so I didn't really think much about that side of things. Now I realise that I need to work at staying fit, that health will only stay if you look after it more. Have I become the perfect fitness and health machine, no I haven't....but I have more determination now than ever before to make sure I keep up my activity levels to give myself the best chance of living to a healthy ripe old age. I'm walking several miles every week, going to Pilates classes and doing some light weight training. My parents both vegetated as they got older, they didn't see the point in doing much in their Mum had dementia when she died and it looks like my Dad has it too. I don't want to go that the saying goes "live every day as if it is your last".

As for future pituitary blog updates, I don't plan on doing many more updates to this blog. I think it has run its course now, one year of me rambling on about my operation and my experiences is probably enough now. I may revisit from time to time, I may even kick off a 'general' blog about stuff, we'll see. I hope you've enjoyed reading my story, if you are a pituitary patient I hope some of this helped. 

A quick word of thanks to who provide a huge amount of support on their website for Pituitary patients. I've used the site a lot.

Anyway for the time being, bye bye.

Cheers, Carl.


  1. Hi Carl
    Just come across your blog, it was a great read.
    I'm 3 months post pituitary surgery now. I have DI, my dose has been up and down like a roller-coaster.
    How long after your surgery did you realise your DI had gone?

    Kind regards

  2. Hi Harv, good question. My DI was diagnosed by my consultant as 'transient', I've still no idea how he came to this conclusion. The tests I had showed I didn't have full DI, so he said it would go away at some point, but couldn't know when. It took a lot of persuasion for him to give me Desmopressin, but it totally transformed my life. After 6 to 8 weeks I spoke to him about tapering off the dose to see what happened, which he was happy with. So over the course of 6 weeks or so I gradually reduced the dose and apart from a couple of hiccups, I managed to stop the tablets altogether. It took over 3 months to get rid of the DI, but only because I had this 'transient' type. Some people's Pituitary gland is permanently damaged and have DI for life, luckily I'm not one of those people.