The Last Post?

It's been more than a few weeks since Caracas,which went pretty well. The stage was big and I was able to control the sound levels on my side of the stage. Moving Rothers to the opposite side from me helped too. My hearing is not what it was but I can live with it. Hopefully the sounds I'm making for the new album sound as good to you as they do to me,

Two weeks ago I went into hospital for the biopsy which involved drilling a hole through the back of my nose into the bone in the centre of my head below my brain. Today I received the letter with the results. Apparently, the consultant had trouble taking a sample of the bone because it was so hard. I should have warned him I'm Irish and he would need to use a diamond tipped drill.. Although the lab couldn't offer a complete diagnosis they are pretty confident that whatever it is it's not nasty and it's unlikely to cause me any problems. I have to go back for a repeat scan in November, presumably to make sure it isn't getting bigger and that's it.
Not the total all clear that I was hoping for but as good as. I'm going to celebrate! Well I would if we didn't have so much work to do on this album before we start rehearsals for the US tour. It's coming up fast. I'm sure it will be a total blast too.

thank you for reading and see you somewhere soon.

Mark

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 12^th. That should be interesting in more ways than one. I’ll let you know how I got on in a few weeks time.

Sunday 12th Feb

It's been over a week since my last update and that's because there hasn't really been much to report. Actually, one really good thing is my tuning has returned to normal. My left ear and right ear are in tune. It's something I've always taken for granted in the past, but I won't from now on. I did a hearing test a few days ago and my hearing is normal up to around 1 KHz. After that it drops sharply to nothing. Not great but so much better than no hearing. The biggest challenge I face will be playing live gigs because I am still very sensitive to loud noise. It makes the tinnitus much worse and can be physically painful at levels I found comfortable prior to the SSHL. Fortunately, Marillion don't have any gigs until June when we are touring the USA and Canada. That's over four months away and I'm hoping that my sensitivity to loud noise will decrease. These days when we perform at gigs we all wear in-ear monitors to hear what's going on during the show. Prior to the invention of these systems every band used monitoring systems that consisted of individual floor speakers for each band member. In the case of Marillion we had2 each for stereo and Ian had the equivalent of a huge PA system positioned behind his drum kit. The overall effect of this was a sonic arms race where we got louder and louder in an effort to hear ourselves better over the noise coming from the rest of the stage. In the immortal words of Ian Gillan, we tried to make "Everything louder than everything else" In-ear monitors block out a lot of external sound so they don't have to be as loud to be heard. Also, as there are less speakers on stage the overall noise level is much less to begin with. Of course, certain things can’t be quieter. A drum kit is a noisy piece of equipment and drummers like to bash fuck out of their kit. I wouldn’t have it any other way. Guitarists need loud amplifiers to excite the strings on their guitars. This creates a feedback loop causing the notes to sustain longer than they would naturally. Essential if you want that Steve Rothery sound. My aim when we next go out on tour will be to position myself as far as possible away from Steve R and Ian while still being on the same stage, so expect to see a change to our usual positions. It's about time we had a different look anyway.

Some of you may be aware that I am also playing keys with DeeExpus, and we have a new album "King of Number 33" out now on Racket Records and in the shops on Edel Music next month (shameless plug over)There are 3 UK shows planned for April and one in the USA in May. I have decided to not do these gigs with the band. I'm very concerned that because DeeExpus don't use in-ear monitors and the stages will be a lot smaller compared to the Marillion gigs that overall sound levels will be unmanageable for me. Also, in order to prepare properly for these gigs I would need to start rehearsals with DeeExpus soon. I suspect that sound levels in rehearsals will be similar to the onstage levels. I'd like to leave it for a few more months before exposing my ears to that sort of punishment.

I really enjoyed working on "King of Number 33"and have no intention of quitting the band. I'm looking forward to starting work with Andy (Ditchfield) on the follow up at some point and sincerely hope that I will be able to join the band onstage at some future date. I will have a better idea of when that might be after a few more months have passed and hopefully my sensitivity to loud noise and tinnitus has reduced further. Also, how it goes with Marillion in the USA will give me a better idea of what’s possible.

I'm still waiting for the follow up MRI scan. Despite chasing the consultant and the hospital I'm still without an appointment. Clearly going private doesn’t guarantee immunity from waiting lists or incompetence. I'm not the worrying sort but I would like to put the possibility that my hearing loss was caused by something abnormal in my brain behind me.

Wednesday 1st Feb

I started running a few days ago after a long break. Marathons can really put you off running. Also, I was having trouble with my knees whenever I ran so I've been running in these odd looking shoes called Vibram Five Fingers. Angie calls them my monkey feet. They help you run properly which avoids impact stress to the knees. This morning I ran down by the river. It was cold but really enjoyable. We started at 11am in the studio. I was feeling done in by 5:30 and asked Mike if it was OK to have a break. My ears combined with much less sleep than I'm used to are taking their toll. The music is progressing and sounding really good so no complaints there. I got my scan results back. The consultant said that my inner ear and related nerves all looked fine but there was something else he was concerned about. It may be something or nothing but I would need a different type of scan to be sure it was nothing and not something. I hope it's nothing. Some people have expressed concern that we may have to cancel some gigs. Please don't worry about that. Our first gig is months away and my rate of recovery has been great up until now. This time last week I was stone deaf in my left ear. Today, I couldn't answer the phone with my left ear but I'm sure I could do a gig tomorrow if I had to. I'm in bed early and I've taken a Nytol to help me sleep. I hate taking anything to aid sleep because it's a slippery slope but it's been a week now since I've had a decent nights sleep and i need one.

Tuesday 31st Jan

Tuesday was fairly uneventful from the point of view of my hearing. I decided against carrying out my early morning hearing test. The incremental improvements have been getting less each day and I didn't want to start the day with the disappointment of no detectable improvement. I'll give it a few days before another test. We worked on a song that lyrically is to do with Montreal. I won't go into any detail, that's for Mr h to do when he's ready. I'm enjoying working with the guys at Real World, who wouldn't? It's a fantastic environment in which to create music. I've been taking a few breaks here and there when I feel that the sound pressure is getting too much. We tend to spend as much time discussing what we are going to do as actually doing it so there's plenty of "ear down time" By coincidence, BBC Radio 4's "Book of the Week" this week is by Nick Coleman, the journalist with SSHL that I mentioned a few days ago. He talks about hearing loss and his love of music. There's a lot of it about. It's like the Blue Car Effect; you don't notice how many blue cars there are around until you buy one yourself. It sounds like the tuning discrepancy between my ears is improving today but I've noticed a new effect that could become annoying. Every time I turn my head to the right I hear a sound like a zipper in my left ear. Zipppp! Turn to the left, silence (if you ignore the sound of escaping steam and dentists drills) Turn right, zipppp... Every time. Ho hum.

Monday 30 Jan

Today I am booked in for an MRI scan and some blood tests. I've no idea what the blood tests are for but I just hope they don't show up anything nasty. I've never been in an MRI scanner before and was unprepared for the amount of noise they make. Jesus! I was made to remove all my metal face furniture because of the powerful magnets involved and was told to lie down on the bench in preparation before being squeezed into the white tube. There's not a lot of space in there and that 20 minute scan felt like a very long twenty minutes. Angie waited outside. She has been absolutely brilliant throughout all this. I have always, wrongly imagined that she would get quite impatient around me if I was ill or incapacitated in some way. Maybe I just had the wrong things wrong with me in the past. Isn't man-flu a serious illness? Anyway, she has been a total rock. In fact, at times it feels like she's being over protective and pampering to the point where I want to say stop worrying about me, I'm fine. The great thing is that she gets how important my hearing is to me and actually so do I now. In the words of Joni "we don't know what we've got til it's gone" Scanned and 6 test tubes of blood lighter I set off for Box near Bath to meet up with the band and Mike for the first time since my hearing loss. They are all very nice and listen to my story before we start work by going to have lunch. It's the Marillion way.... Part of my research the previous week was into earplugs. You name em, I've now got a few pairs of them. And the winners are.... Hearos... by a country mile. I knew they were going to be essential in blocking the out of tune mess that my left ear currently calls hearing. The afternoon was ok, we worked on some arrangements quietly, which I could cope fine with. Later, after dinner we jammed, sometimes loudly which was more of a challenge. My tinnitus gets louder in response to loud music even with an earplug in my left ear. It's obviously a brain thing.

Sunday 29th Jan

Over the next few days more of my hearing gradually returned. I started to conduct my own hearing tests early each morning to track my progress. It's amazing what resources you can find online. Each morning before anyone else in the house was awake, I would creep downstairs excitedly to check if there had been any improvement in the night. I indulged my inner geek and created a graph using Excel to track my progress. Each small daily improvement gave me hope that I might one day regain something approaching normal hearing in my left ear. There was still one big problem with my newly returned hearing, well three actually. First, it was badly distorted, second, it was badly out of tune with my right ear and finally it was somehow spatially disconnected from what I was hearing in my right ear. Fascinating and disturbing at the same time. As the lower frequencies started to return I detected that they were behaving themselves better that the mid to higher frequencies. I had no real high frequencies to speak of. The upshot of all this was that whenever our kids spoke, or even worse shouted, it went right through me in a way that chilled the blood. I love our three kids dearly but I was wearing an earplug in my left ear for most of the weekend just to avoid going insane. Jude (4) acquired a new word from his sister Tallulah (10) and kept shouting it out, feeling very pleased with himself. Penis! penis! penis! "Do you know what that means daddy?" Thanks Tallulah. It could have been worse I suppose..

Thursday 26th Jan

In the night something changed. I was starting to hear something in my left ear besides the invented sounds of my stimulus starved left hemisphere. You couldn't exactly call it hearing BUT it was something. I excitedly put a earphone in my left ear and played some music. I heard nothing until the volume was around 3/4 full and then it was horribly distorted and unbelievably, totally out of tune. I tried not to think of what that might mean and clung to the fact that it was an improvement of sorts. I spent the morning rearranging my home studio so that the both speakers were to my right as I sat at the keyboards.I hoped this would enable me to work with only one ear as the left was proving to be more of a hindrance than a help. When I was in secondary school, my art teacher John Germain was an important musical inspiration to me. He would sometimes lend me LPs to take home and listen to. Because of a botched operation following an accident playing rugby, he was paralysed on one side of his face and totally deaf in one ear. He explained that he didn't ever listen to music using headphones because even with one ear, if the speakers were positioned right, he could hear the stereo image. I failed to emulate this trick. I don't know if it's something that can be learned but to me, wherever the sound came from in the room, it sounded like it was dead centre in front of my right ear. I could see I was going to have to take extra care crossing the road from now on. Music in mono is flat and one dimensional, difficult to understand, a challenge to listen to. I was really starting to worry about Monday. Marillion we planning to meet at Peter Gabriel's Real World studios then to continue working on the next album. I read a lot about SSHL and became something of an amateur expert on the possible causes and cures. It made for depressing reading. In the evening I went down the local pub but only stayed for half an hour because the noise was horrible in my left ear and I couldn't understand most of what was said to me.

Wednesday 25th Jan

I got a phone call Wednesday morning asking me to come to see the consultant that evening. My email had done the trick. I was elated and hopeful that he would sort me out. When I arrived at the hospital I waited less than five minutes before being called in to see him. I love the NHS. Who doesn't? If you live in the UK it's unpatriotic to say anything else. You could get tarred and feathered for breathing a word of criticism against anything our wonderful National Health Service do. The sad truth is, paying gets you a better class of health care. If you can afford private health insurance, do yourself a favour and get some. It could save your life or at least cut the amount of time you spend waiting to see somebody who can help you. My consultant was clearly intelligent, kind and knowledgable about his subject. All things ear. Unfortunately he didn't have great news. In a very nice way he revealed that we don't really know what causes SSHL and that roughly one third recover completely, one third recover some hearing and an unfortunate third learn to live with total deafness. There are a number of theories as to what causes SSHL, the leading contenders 1) a virus, 2) nerve damage and 3) obstructed blood flow are just a few but we don't really know what causes it. He said he could prescribe some drugs to help in the event that I had one or these but there was no real evidence to support this. On the other hand, they wouldn't do any harm. At that moment I would have pissed on a spark plug if I thought it would do any good so I said "yes please" One possible cause of nerve damage or restricted blood flow could be a tumour so he advised I should have some blood tests and a MRI scan too. Purely as a precaution. I agreed. Angie and I drove around Oxford at night looking for a pharmacy that was open and had all three drugs in stock. They were, steroids, an anti-viral and something called Serc. Things were looking pretty bad. I had another night of kettles and waves crashing on the shore in my left ear.

Tuesday 24th Jan

I had a disturbed night's sleep on monday. The tinnitus calmed down once things were quite but it was still enough to keep me awake once I woke up during the night. When most people experience tinnitus from noise damage it's usually a single high pitched note that drives them slowly mad unless they learn to cope with it and ignore it. Tinnitus from SSHL is a different sort of thing. It appears to be the brain's effort to cope with the sudden lack of sensory input from the damaged ear. Guardian journalist, Nick Coleman described it perfectly in a piece he wrote about his own SSHL. I've taken the liberty of quoting him here.. "I emerged from hospital a week later, profoundly deaf in one ear, my brain refusing to let my ear go quietly. Its reaction is to fill my head with noise. Imagine the sound of pressurised air escaping from a central heating valve. That's the sound that fills the right hemisphere of my head round the clock. Concealed within that hissy cloud there's another layer of far subtler sounds. In the dead of night, when my wife is breathing silently and there is no other sound going in my good ear, I can hear beneath the pfffff a strange polyphony of whistles and cries, like a drowning choir, accompanied by a tiny monkey playing a teeny pipe organ. It can be quite soothing. But if my wife suddenly exhales through her nose, or rustles the duvet by moving her head slightly, then all hell breaks loose. I hear gasping cats and boiling kettles. When two or more voices are joined together in amiable conversation, I hear trains entering underground stations. Right now, sitting at my computer in an otherwise silent house, the minuscule hum of the machine is at a pitch somewhere between the central-heating pffff and the cat's gasp. This is not conventional tinnitus, but entirely reactive to input in the good ear. It is the auditory equivalent of the illusion experienced by amputees - the feeling that the missing limb is still attached. My brain is generating sound to compensate for the lack of auditory activity in my ear." I have to say that his SSHL sounds much worse than mine, at least I don't have the accompanying loss of balance and nausea. Not wishing to give up on getting treatment I decided pay for private medical treatment. After doing some research I settled on trying to get an appointment with a ENT consultant based in Oxford, reputed to be the best around. I called his secretary and was told the next available emergency appointment was next Monday. A week? For an emergency? I booked it amyway and wrote him an email describing my situation, the fact that I was a professional musician, how my hearing suddenly failed, and would he consider seeing me sooner. Another day wasted. I was kicking myself that I hadn't seen a doctor in Thailand.

Monday 23th Jan

Monday morning I was up early, partly due to the time difference and partly due to the new noisy friends I had acquired in my left ear. I was rather amused at the strangeness and variety of sounds that only my left ear could hear. I would quickly grow tired of them but for now I was interested in this new phenomena and was still fairly hopeful that it was a temporary condition. I waited impatiently for the Oxford Hearing Centre to open so I could call and book an appointment. I, and the rest of the band had visited there around five years ago to have foam moulds of our ears made for our custom made in-ear monitoring systems. They are called Ultimate Ears but if you ask me, there is nothing ultimate about them. They cost over £600 a pair and sound pretty poor I my opinion. There is a room in the marketplace for a better in-monitoring system if anyone reading would like to have a go. Last time we went to the OHC I opted to have a hearing test. I recall the rest of the band choose not to on the basis that they didn't want to know what damage they have inflicted on their poor ears over the years. My hearing test was unremarkable, it showed some age related loss in the higher frequencies and a small amount of noise related loss in my left ear. This visit would be different. I spoke to a nice chap on the phone and he said I should come in straight away but not to worry, it was probably wax. I drove to Oxford in a hurry. I wasn't reassured by his "probably wax" over-the-phone diagnosis. When I arrived he was bright and breezy, asked me about my holiday and explained that ear wax was hydrophilic and expands on contact with water. The sea water mixed with the wax and made a solid plug in my ear. Simple. He swung the TV monitor my way so I could see as he stuck a camera in my ear. We both had a perfect view of my eardrum completely free of wax. That's the first time I had ever seen an eardrum and it looked like a delicate pink concave translucent membrane. I was fascinated that such a simple thing could be the conduit of everything we can hear from the highest whistles to the sub bass under the stage at our gigs. I was also struck by the change of demeanour in the audiologist who was examining me. He looked concerned as he whipped out an oversize tuning fork, banged it on the table and stuck it to the middle of my forehead. "Where is the sound coming from?" he asked. "Somewhat to the right" I replied. I didn't understand the significance of this test but he did and said we should carry out a full hearing test. Now. The tuning fork was conducting the sound straight through my skull to my inner ears. Had my hearing been normal I would have heard the sound in the middle. Barotrauma doesn't normally affect the inner ear but I was blissfully unaware of this at this point. He shut me in a booth and proceeded to send me a bunch of different frequencies through the cans and I became increasingly worried. Eventually he announced that I should go immediately to A&E because this was a medical emergency. Nice. I drove like a bat (with one ear) out of hell to The John Radcliffe Hospital. Spoke to Angie on the way trying not to cry as I told her what was happening. She came to meet me at A&E and we sat there for 4 hours as people came and went with various injuries from dog bites to burns while my "medical emergency" went unattended. It's true, I wasn't feeling any physical pain but it seemed that the more time passed the less that could be done for my broken ear. Eventually I was seen by a junior ENT doctor who said there was nothing they could do and that I should go home.

Sun 22nd Jan

Over the previous three days the hearing in my right ear returned to normal but my left ear was a different matter. Strange random noises started to replace my normal hearing. I became more concerned as the days passed but was reassured by reading about Barotrauma on the Internet, "the source of all knowledge" Unfortunately, the knowledge I was acquiring wasn't applicable to me. Barotrauma is fairly common amongst divers, according to the Internet, and is caused by water pressure damage to the eardrum or middle ear through failure to equalise pressure while diving. The pressure changes most in the first few feet of diving and a dive of 20 feet would easily be sufficient to cause the symptoms I was experiencing, or so I thought. The flight home was uneventful but I did have plenty of opportunity to use headphones and to my growing horror I realised I was completely deaf in my left ear. It's amazing how the brain can compensate for things. I knew the hearing in my left ear was bad but it was only when I put a earphone in just my left ear and nothing in my right did I understand how completely deaf I was. I was starting to panic.

Thursday 19th Jan

This all started on the Thursday the 19th of January. I was in Thailand, Khao Lak to be precise, with Angie my partner.it was our first holiday sans our 3 kids for 5 years and we were having a great time. We decided to go on a boat trip for the day to the Similian Islands. This included some snorkelling which I sometimes enjoy doing. I've done a bit of scuba diving in the past so I understand how to equalise the pressure in your middle ear while descending etc. It was late morning and I was about to return to the boat when I saw a green sea turtle swimming lazily along the bottom, at a depth of around 20 feet. I swam down to take a closer look. The turtle didn't seem alarmed so I approached it and I gently touched it's back and then swam to the surface. As I climbed onto the boat I noticed my ears were ringing and the high frequency ranges of my hearing were reduced. This felt exactly like the sort of thing you might experience after a night of loud music at a gig. Over lunch I noticed that I was having trouble making out what was being said which was a shame as the guy I was attempting to talk to happen to be from switzerland and a former bass player who at one time played with the Bee Gees or The Brothers Gibb as they were known in the 60s. Later on the boat ride back to the mainland I listened to Blackfield's Welcome to my DNA and although I recall some hearing loss it was by no means as bad as it would get over the coming days.

Why write about this?

I decided to write this blog firstly to keep some sort of record of my experience of the devastating condition known as SSHL or sudden sensorineural hearing loss. It's certainly not as devastating as terminal illness or the death of a loved one but, for a musician like me it's up there. Have you ever wondered to yourself, if you had to choose, would you rather be blind or deaf? Or if you had to choose between losing one ear or one eye, which would it be? I now know which it would be for me... The other reason why I decided to write this down was because I have told some people what's going on, close friends and family at first and inadvertently, last night via Twitter when I posted a message publicly that was meant to be private! Don't drink and tweet kids! I know that once the word gets out there will be a number of people wanting to know how it's going. Will I be able to continue as a member of Marillion in my new mono status? Well, the answer is, I intend to give it a bloody good go.