February 2014 - Actual MRI scans of my head

An MRI scan, but at what cost? Well some research I've been doing suggests that an MRI scanner alone can cost up to £2million, that's before it is fitted in the hospital costing many hundreds of thousands of pounds more.

I've had 3 MRI scans now, all very necessary in my opinion! But you do go into these things without a real idea of what you are about to cost our beloved NHS in terms of treatment costs. In the research I have been doing, I haven't managed to find an actual cost that the NHS quotes for the cost of an MRI scan, but of course the scan itself is only the beginning. You will have seen at least a GP and a consultant beforehand and then there are the specialist people needed to perform and analyse the results of the scan, and another trip or two to see the consultant again. All of which adds up the cost - the cost will vary of course depending which part of the country you're from.

Looking at various prices published on private health sites, MRI brain scans seem to cost anywhere between £300 and £700 and even up to £1,000. And as I said, that is just for the scan, by the time you factor in the cost of the specialist humans as well, you are probably talking another few hundred pounds on top. I'm speculating of course, but if you said anywhere between £1,000-£2,000 per MRI that may be reasonable. Now in my lifetime I've been lucky to always be employed, so I have probably paid my dues in 'National Insurance', but even so that is a lot of money to cost in 3 MRI scans. Add on top of that my surgery (from a top neurosurgeon), anaesthetists, couple of hours in theatre, 2 five day hospital stays, drugs, blood tests etc.etc. And I'm sure my illness cost is only a fraction of other less fortunate/less healthy people. Anyway, as I said, probably all a bit speculative, but it does make you think. You take the NHS for granted a bit until you need it, then when you do need it, the last thing on your mind is how much you're about to cost them.

So what of my own scans? Well thanks to the lovely people at the QA Hospital in Portsmouth (Partha and Martin, you know who you are), I have been provided with some copies of my very own scans. The main reason was to prove that I do indeed have a brain in my head....but seriously I thought it would be fun to show some before and after scans of me with and without tumour. One word of caution, I am obviously not a radiologist or a Consultant Endocrinologist, so I think/hope what I am highlighting is indeed my (ex)tumour....it is how I remember it when I was shown it back on the 18th May 2013. "A peanut shell sized tumour about 3cm long" was how I think it was described. The red box I have drawn around the first scan is the tumour, the second scan was taken last month....

Now, I'm not expert, but what a wicked pair of images, seriously impressive. No wonder these machines cost so much money. The next image is designed to show you nothing specifically, other than what a total alien I look like :-)

So there you have it, proof positive that I don't have a tumour any more. Which is the best possible news a man can have. Over and out....

February 2014 - I'm looking good!

So today was the big day, my first full post-operative endocrine check up. The good news is, it was good news!

My MRI scan showed that all of the tumour that could feasibly have been taken away without further damaging my pituitary gland, has been taken away. This MRI scan how serves as my 'base-line' scan with which to judge the scan I'll have in about a years time. It will allow the experts to judge whether I have any re-growth of tumour or not. Certainly my consultant was really pleased with the result, therefore so am I !!

As for my hormone balance and other levels that were checked with my recent blood tests, all is looking good except for continuing slightly low Testosterone levels. This will be remedied by upping the dosage a bit.

In the end I was a bit nervous before going in, as your mind can play tricks and convince you that there just may be something awry, but that turned out to be rubbish as always. I mentioned a few of my other niggles too...

Energy crashes
I have mentioned this before in my blog, occasionally I can really feel lacking in energy for no obvious reason. Dr Kar explained this as normal in my situation, because I am taking a flat daily dose of Hydrocortisone. But in a person with normal pituitary function, the gland will adjust the dose as the body needs it. I guess in all this, it is where I feel a bit cheated, that my pituitary gland can't work on automatic any more. Some minor change in my bodily Cortisol needs, would normally kick the pituitary into action, and out comes an extra dose of Cortisol and the human just carries on as normal, none the wiser. But not so for me, I take 10ml of Hydrocortisone in the morning, and if my body uses all that up for whatever reason, I get an energy crash....run out of fuel if you like. This has happened about 12 to 12:30 a couple of times, and as it is nearly lunchtime I take my lunchtime dose of Hydrocortisone and have some food and drink, and everything returns to normal. Apparently the body can get used to the dose levels given by the tablets, but this can take a while. It isn't particularly troubling, annoying when it happens, but also very good to know that in my situation, it is 'normal'.

Numb/tingly leg/foot
My MRI scan and nerve conduction tests showed nothing, but the problem persists. It apparently could be a vitamin deficiency, so a blood test may be in order to check it out. So I will do in due course, see what gives

"Mucky" nose
I'll give this another little while, and if it still gets on my nerves, my consultant will get me an ENT referral

Cramp
Ever since my operation, I have had bouts of cramp which I never suffered with before. These can be in my toes (same leg as the numb/tingly leg) or sometimes in my fingers/thumbs or even in my jaw muscle. Apparently, this may be caused by my continuing low Testosterone levels. So once the dosage is upped, we'll see if this goes away.

So that is my summary of today, good news all things considered. 

Finally, I watched a program on Channel 5 call Brain Hospital which detailed the progress of 'Simon' who needed an operation to remove a pituitary tumour, very similar story to my own. Certainly makes you reflect.....

February 2014 - Some gruesome pictures

I was going through my phone today deleting loads of old pictures, and came across some pictures I'd taken during my time in hospital and just afterwards. They don't show me at my best, but they do show some of the state I was in at the time. As I said in my last blog, I am a year down the line now from when it was first noted I had something wrong with me (not fully diagnosed in February 2013), so it pains me a bit to look back at these pictures....makes me remember those unhappier times.

The nose.....

This picture was taken on bed 5 on the D-Neuro ward in Southampton, the day the packing came out of my nose. For 3 days, I had cotton wool "mini-tampons" stuffed up my nose whilst the worst of the bleeding subsided. Then the nurse came along, and said it was time for the packing to come out. To say the least, it was unpleasant....they were a long way up my nostrils. For the rest of that day, and on and off for the rest of my stay in hospital I had a nosebleed. It is interesting to note that it was my left nostril then that was bleeding, and it is still my left that is a bit sore now, and the one that still produces a fair bit of mucus. Of course the main purpose of my stay there was to remove a tumour, the nose just happened to be the "way in" to my head. It gets bashed about somewhat, but is preferable to them having to open up your skull!!

The rash....

Clarithromycin, an antibiotic. I needed antibiotics to ensure I did not get an infection through my bashed up nose around the site of my operation. I'd had this drug before and I was fine, but this time I was not fine at all. Most of my body came up in this purple rash, which as time went on began to itch, and itch, and itch. In due course a combination of this and the antibiotic they replaced it with (Doxycyclin) caused the skin on virtually my whole body to peel off. Whilst it was unpleasant to look at, in the grand scheme of my recovery it wasn't terrible, but I could have done without it.

The peeling....

I would wake up in the morning and there would be skin everywhere, it really was gross. Big chunks of skin just peeled off, in all it took about 2 weeks for it to run its course. My face was largely spared, but everywhere else from my hands, arms, torso (back and front), legs and feet peeled. I've never seen anything like it and hope never to again. Deb hated this part of my illness cycle the most, she made me hoover everywhere I went around the house and wouldn't come near me until the peeling had finished....can't blame her really.

The 'elephant legs'....

If you've never seen my feet, then you have no reference to go by I suppose. But at 5 foot 6, with size 7 feet, I'm pretty petite by a man's standard. This picture of my feet however, and what you can see of my ankles and legs tells a different story. This was one of my least favourite parts of recovery. When I came out of Ward C6 in Portsmouth I had bad fluid retention, I really worried that my legs/feet would not recover from their elephantine look. The doctors and nurses assured me they would recover back to normal, and indeed they did. But it was damned uncomfortable walking around on them, and I did need to move around on them to make sure the fluid disappeared. Bloody horrible.

You'll be glad to hear, that's it. No more gruesome pictures!

In other news, with MRI Scan and blood tests in the bank, it is off to see Dr. Kar on the 17th to see how I'm doing. Another update after that......laters!

February 2014 - Another month whizzes by

I can't remember exactly when in February 2013, but it was the month I had the fateful blood tests that led the medics to realise I was ultra low on Cortisol and Adrenaline. Deb and I still talk about the day the doctor* phoned my wife and asked "where exactly is your husband?" with a vocal tone that suggested something was wrong. What the doctor meant was 'is he driving or operating heavy machinery' or doing something that could endanger his life. As it happens I was sitting at my desk at work, typing much like I am now (albeit at home). The low level of Cortisol I had in my blood could have led me to pass out, and the doctor frequently said to me he could not believe how apparently healthy I was with such a low level. I still vividly remember the panic that set in that day imagining all the things that could be wrong with me. Google did not help me that day :-)

*sadly this doctor, Dr. Newman, had a massive stroke recently and I understand he may not recover. He is only in his 60s, I hope his prognosis is wrong as he is a lovely doctor and really helped me in the early stages of my diagnosis. He did all the right tests I needed so that by the time I had the referral for Dr Kar my Endocrinologist he had pretty much all the knowledge he needed to make a diagnosis rather than start from scratch.

So in February 2013 I was prescribed Hydrocortisone tablets and I still continue to do today and probably for the rest of my life.

Talking of Dr Kar, he has recently joined the movement of the "NHS Change Day" and made a specific pledge to help his patients. As an inpatient of two different hospitals last year, I can really see how this will make a difference if he can make it happen (I suspect he will). Here is a link to his blog. It really is worth a read.

As for my progress, a load of blood tests coming up at the end of this week....something I no longer fear half as much as I used to.

Happy February everyone!