Like many people with this condition, I had several ear infections as a child which seemed to calm down as I grew. The first indication that there might be a problem was a lump behind my right ear. It felt like a swollen gland. There was some tenderness and a general ache. That was back in 2003 around the time my mother was undergoing a mastectomy. It niggled but I had more important things to worry about. The lump never really went down and pretty soon the headaches commenced. Initially they were predictable. I would get a pulsating sensation in my right eye and a migraine type headache with nausea and dizziness would follow. They would typically last for 3 days and seemed to roughly happen at my time of the month. There was a family history of hormonal migraine so I wasn’t too concerned until the frequency and severity of the headaches increased.

I had several ear infections and courses of antibiotics. When the headaches became unbearable, I would go to my GP with heavy heart and try to express the misery they were causing, in the hope that something could be done. I quickly learned that there is a tendency to link migraines with stress and also a nod towards psychosomatic illness. The usual response was to prescribe painkillers.

My hearing began to go. It must have been slowly but the penny dropped one day when I realised that I was almost always switching the phone to my left ear in order to hear. Eventually my ear began to bleed. A burst ear drum was diagnosed and it just refused to heal. More antibiotics, and the beginning of my trips to the ENT specialists.  The consultants hoovered my ear, prescribed antibiotics and drops. I tried to relay all my concerns. The pulsating, the headaches, the ever present tenderness and swelling behind my ear, the hearing loss and ever present tinnitus but there was nothing seen so therefore no problem. After another referral by the GP, I was about to be discharged again when the consultant did a last look with the microscope and said ‘oh hang on’. He found it hidden somewhere round a corner. He explained about the possibility of a condition I had never heard of and the assorted, associated risks and  organised a scan. I should have left his office terrified at the thought of surgery and at his warnings of brain abscesses but I just had an overwhelming sense of relief that I wasn’t a neurotic stress head who was imagining the whole thing. When I went for the results of my scan, I was told I had a large Cholesteatoma which is an abnormal growth of cells forming a kind of benign tumour which will continue to grow destroying everything in its wake.  I was asked ‘why has it taken us so long to see you?’ I explained that I had in fact been back and forth and the consultant explained that the position made it hard to spot.

December 2007, I had surgery to remove the cholesteatoma.  All was well for a while but the headaches never really went away. During one particularly bad period I tried daily medication. From what I understood, this tablet was an anti depressant. Beta blockers were also suggested. The anti depressants not only made me feel really strange and I put on weight, but the headaches got worse. I took myself off them and got a telling off from my GP. He then tried to talk me into trying beta blockers and I told him I really did not want to and would rather continue to treat the headaches with pain killers. During this visit, I had a more pressing concern as I had found a lump in my breast. I was becoming wary of taking all these drugs and feeling that the underlying cause was being ignored. Said GP who was clearly unhappy about my non compliance, checked out my lump and told me that it wasn’t a cyst and I should prepare myself for bad news. Following a soul searching 10 days, a visit to the breast clinic confirmed that my lump was in fact a cyst. A more cynical person may think that this GP was getting his revenge on a difficult patient rather than being incompetent.

Things continued in a similar fashion for a while. I had better periods but any colds or hay fever symptoms would increase the headaches again. Sometimes a simple cold would have me confined to bed due to the resulting sickness, dizzy spells and severe headache. On my yearly visits to the consultant, I conveyed my symptoms. I rarely saw the same consultant and was told that headaches were not a symptom of Cholesteatoma. My concern was that the problem had been overlooked for so long the first time. On my last visit in April 2013, I said that I thought my hearing had deteriorated further. I had a test and was not really told if this was the case but I have pretty much zero hearing in my right ear at this time. I was told to remind them to do a hearing test every two years. I was pretty sure at this stage that all was not well in my ear. Come June 2013, I was experiencing severe headaches about 4 days out  of every 7. The migraine medication was hit and miss and I got by on a cocktail of strong co-codamol, sumatriptan and ibuprofen. In July, my ear began to discharge a watery brown stuff and the pills didn’t work. My (new) GP prescribes antibiotics as I am going on holiday and says to go back when I return if it doesn’t stop. The discharge is only when lying down so it is not spotted by anyone who is examining my ear. Thankfully the GPs I saw spotted an inflamed area and I was referred to the consultant.

I wait outside his office after being told that the registrar is taking clinic as the consultant hasn’t arrived. I am literally praying that he comes as it is the same consultant who spotted it the first time. I have not seen him since soon after my operation. I spot the consultant running in the back door and hope for the best. I relay all my symptoms and he takes a look.
‘it all looks okay’

My heart sinks but he decides to take a look with the microscope. The pain is excruciating as the sucker thing goes on. Waves of nausea over come me and I feel the sweat breaking through my skin. We then go through to his office and he gives me a long look which I interpret as ‘it’s come back’. He said I have a hidden inflamed area which is bulging suggesting infection behind the ear. He says that I should take antibiotics in tablet form and drops then ‘I want to see you in 2 weeks’.

That long look again! He then tells me he is on annual leave in two weeks but will pass on my information! I collect my potions and try to make another appointment. The receptionist is confused as she sees he is on leave when he wants to see me again. She tells me she will speak to him and send an appointment in the post. I see someone else in 2 weeks and go through the same routine. I am sent for a scan and get a date for September. I have my scan and have an appointment for the result two weeks later. I see the original consultant again and am told that I had the wrong type of scan and should have had a diffusion weighted MRI. I have a cyst but it is still not possible to see behind it. I wait another couple of months for this scan. At this stage I am referred to another consultant as my current one is reducing his number of surgeries. When I go for my second lot of results with the new consultant, I am not told that the cholesteatoma is back. There is talk of the cyst, surgery and filling in some spaces behind the bone.

I get a copy of a letter to my GP in the post. This is far more informative than my consultation. It says that Cholesteatoma is evident in my right ear. It also says I have severe attic retraction in the ear drum of my good ear but no cholesteatoma.

June 2014 I have fairly radical surgery (so my GP told me) I had some bone cartilage reconstruction and have some hearing return although my tinnitus is louder than ever. I asked whether I had a CWU or CWD. The registrar said they almost always do CWU. After checking my notes, I was told the first surgery was a CWD and this time they put the canal wall back up. Now I am really confused. Initially after the second surgery, I was told that I would have regular MRI scans. This was incredibly reassuring due to difficulty in spotting it both times. On my next visit (a different registrar) I was told that they wouldn’t be necessary. This was very frustrating after going through so much pain and anguish before each diagnosis. During my last check I was again told that I would have an MRI scan in June 2016, two years post surgery and before my next check up. I will then have another seven years post surgery if all is well. I am hoping this is the case but a big part of my experience with this condition, is inconsistency in terms of who I see and what I am told.  I had met the consultant on my last check up a couple of months before when I was referred for redness behind my ear and pain in my face. There was no infection but instead of just checking and then sending me home, he spend time asking questions and telling me that it was likely to be muscular pain and possibly a jaw problem. The dentist has since confirmed that there is some misalignment on the right side when I open my mouth too wide. It really can make a huge difference to feel that symptoms are not dismissed when an obvious cause can’t be seen.

So that is all the medical facts. The Cholesteatoma has impacted my life in many more ways. I have become anti social and reclusive. I feel panicky if I am invited to parties or pubs. My hearing is such that I cannot join in conversations if there is background noise. I rarely drink alcohol as it will almost certainly trigger a migraine. I experienced some level of headache and sickness most of the time. I have finally been beaten by the headaches and take propanolol daily. They don’t seem to be as severe but can still be bad when I have a cold and are still very much a part of life. The propanalol and sumatriptan cause numbness and increase symptoms of Reynaud’s which I have always been prone to. A winter dog walk is no fun and I have been known to be reduced to tears by painful hands and feet. I also have to take medication daily for reflux. I don’t know if any of the conditions are connected but the reflux always seems to be worse post surgery.

On better days I remind myself that I have much in my life to be grateful for. I sometimes feel that people around those who have a health condition, start to lose patience and in some cases may be sceptical about symptoms when all the medics are saying nothing is wrong. I am guessing that most people suffer in silence as they don’t feel believed. I also have a lot of guilt about how much this condition has at times impacted on my loved ones. I have missed out on spending more time with younger nieces and nephews because of the headaches. I try to stay as positive as I can and avoid stress as much as possible. I had to concede that my job was quite stressful but was lucky enough to be able to take a less demanding role with the same company. It meant quite a big drop in my income but my health is important. My small rescue dog has helped me focus on remembering what is important in life. She also lets me know when my phone is ringing or somebody is knocking the door. Anyone with a dog will also know how good they are at helping with recovery after surgery. I would like to think that my journey on this road has concluded but I am not counting on it.