Tuesday, 20 March 2012

20th March 2012

It's been over a month since my last post. I know some people have been wondering what's happening with my hearing and why I'm not writing about it. Well, the short answer is - not a lot, and I'm getting sick of talking about it if I'm honest.  Since I was last here in blogland I had the follow-up MRI scan that I was waiting for. When I arrived at the hospital they told me to go out into the car park to the temporary scanner  parked there. Their regular scanner was broken and would be out of action for a few weeks. I’m not surprised, I thought to myself, remembering the bloody racket it made. This time I was prepared and brought my ear plugs. Unbelievably this one made even more noise.  It sounded like it was coming apart in a final grinding, clanking, banging hurrah. Are they really meant to make so much noise? I know it’s all very exciting cutting edge technology, with super cooled, superconducting magnets that make it all possible but you don’t expect such cool (excuse the pun) machinery to sound like something from a Victorian steel mill. This time they had me in there for nearly an hour and to my surprise I fell asleep for some of the time. I then had a few minutes in the CT scanner, a far more civilized affair. I had my metal belongings returned to me and was told I would hear from the consultant in due course.
About a week later I had an email from the consultant. What followed was one of the worst afternoons of my life. The email informed me that I had “bone disease” in the base of my skull that may require surgery. It sounded quite scary. Bone disease = bone cancer to me. Base of the skull? What’s that? After a few minutes on the internet I found out that the base of the skull is the bit that stops your brains from getting mixed up with the rest of the stuff in your head. I also found out that parts of it can be difficult, if not impossible to get to should surgery be necessary. I told Angie what I had found out and she just stared at me in disbelief. I think that she, like me was having trouble taking it in. I wrote back to the consultant and said that I was a little worried (so reserved, don't you think so?) and could we have a chat on the phone because I have a few questions like “Should I be getting my affairs in order?”
I spent the next few hours scaring myself some more by reading all about skull base disease. Did you know there are doctors that have clubs dedicated to a common interest in the skull base? Sounds like a great laugh.
About three hours after the first email, another arrives reassuring me that I shouldn’t worry. He’d shown my scans to a few of his mates with more experience of head bones and they both though it was a benign fibrous ossification and I should come in for a chat. I wasn’t sure I liked the sound of that either but was feeling better about the state of my head.
This morning I went to see the bone specialist to discuss the scans in person. He showed me the insides of my head which I found fascinating, but even I with an untrained eye could see the thing that was causing concern. It is situated almost at the center of my head, at about eye level and in front of the cerebellum. I would estimate it to be about 3-4cm across. I took a picture of the screen so you can see for yourself.

X marks the spot!

We discussed the options which were:
1)      Do nothing.
2)      Do nothing for the time being but keep coming back of scans to make sure it isn’t growing
3)      Perform a biopsy and find out what it is.

I asked him “what would you do?” He replied without hesitation “have a biopsy” I’m waiting for the appointment so he can drill a hole into my head, entering through my nose, to take a small sample of the offending tissue/bone.
What has become clear is that my “benign fibrous ossification” (if that’s what it is) is nowhere near my left ear and probably has nothing to do with my hearing loss.  It’s a bit like when you take your car to the garage because the air conditioning has stopped working and they call you to say it needs a new gearbox as well.
My hearing has stopped improving and the tinnitus is still a problem when it’s noisy but I’m learning to live with it. After pulling out of the DeeExpus shows in April, I thought my first gig with Marillion wouldn’t be until June but unfortunately that's no longer true. We are going to play in Caracas on April the 12th. That should be interesting in more ways than one. I’ll let you know how I got on in a few weeks time.


  1. Good luck, Mark - I keep my fingers crossed everything will end well. Please don't worry too much and remember: http://goo.gl/Ih0tI

  2. I just read it :/ How hard is not to know exactly what is going on and in addition, to find "new" things when you are just looking for a diagnosis and a cure...All my best wishes and lots of love.

  3. Thanks so much for keeping us informed, Mark. It all sounds concerning but I'm sure you will have some good news once the biopsy comes back negative. Wish you all the best. And if you have to cancel some shows we will understand.

  4. I know it is tough. I have lived with Tinnitus for 20+ years. Coping strategies are key. I know it must be scary. BTW you are right they find all kinds of strange things when they start looking. That doesn't mean it is the cause of anything. Every person is different. That is one of the problems with the new imaging tech. They don't really know what causes problems and what is normal and just not detected in the past.

  5. Hi Mark, what a nightmare ! bloody tests eh? I have an ECG next week but like all tests at least better to know what's going on etc I also have Tinnitus - had it for about 2 years now but am getting used to it. It is not stopping me listening to music and going to gigs which is my life. anyway good luck with it all and I look forward to the new Marillion album. Best wishes-Marc.

  6. I know how trying this all must be, Mark. Best wishes! And seconded re: what CaonKirk said about new imaging tech. I have also been dealing with the result of new technology picking up all kinds of stuff that would have been unnoticed in rhe past.

  7. HI Mark- just a big "DITTO" to everything the others have replied. We'll just keep you in our thoughts for positive, healing wishes. Best of luck, Val & Mike

  8. I just started reading your blog from Day one and I want to scream! They told you about this "bone disease" in a flipping email?