The saga begins Ö.
A couple of months ago I applied to join the police force. I was told by the university that I passed academically and was sent the necessary forms required by the police department for further checkups. I filled these forms out and was all ready to go with exception of one thing. I had to undergo a hearing test. I was not worried about this because I was told that I could be fitted with a hearing aid.
Early August 2002.
* The loss of hearing in my left ear didnít bother me as I was used to it.
* It was not threatening in any way.
* It was going to cost around $4000.00 for the operation.
At the time I didnít have the operation because: -
In about 1990 I went to an ENT specialist in Dee Why. At the time I had a hearing test by an audiologist on the premises and was later told by the specialist ( I am unsure of his name Ö it was a long time ago ) that I had tinitus, that it was very common and that he could operate by replacing one of the bones behind my eardrum with a pin.
My Story..... it all started.
I attend my appointment with the audiologist and am advised that I could be fitted with a hearing aid in my left ear. I was asked how my hearing loss came about and had I seen an ENT specialist at the time. I told her that it was gradual over about a 2 year period (Since then it had remained the same) and that I had seen a specialist at the time but he did not request I have an MRI done.
A few more tests with the audiologist and then she advises that perhaps I should see an ENT specialist and have an MRI done.
After speaking with my GP she refers me to a specialist.
I attend my appointment with the specialist. She asks me the same questions as the audiologist and says that she can see no reason why I couldnít join the police force with a properly fitted hearing aid. However she sends me off to have an MRI done just in case.
Have the MRI scan done (they are very noisy machines) and I pick the images up on Saturday morning.
Go back for an appointment with the specialist and am advised that I have an acoustic neuroma, which, if left to grow would eventually kill me. He advises that I require surgery and refers me to a surgeon. But first I must have more audiology tests (this time at his office) so as to provide the surgeon with more detailed information.
Went in for another audiology test today. Basically the same test as before but this time they put electrodes on my ears and the top of my head, the other end was hooked up to a computer. The computer played a series of clicks. I was told later that it hadnít really shown much because I am too deaf in the left ear.
I asked the receptionist about my referral from the doctor to the surgeon and was told it had not been done. She left a note in the book for the doctor to do it on Tuesday, as he was not in on Monday.
Called the surgeons office when I got back to work and made an appointment for Wednesday 23-10-2002 at 9:30am. The receptionist told me that I would be sent out a confirmation and a map of how to find his office. I then called back the ENT specialists office to advise I had made the appointment and was told the referral and any further information required would be faxed over to the surgeons office.
Arrived at Surgeons. Spoke with him regarding the tumor. He explained what it is, where it is and how big it was (very informative). I was given a hearing test (another one) and was told that I should consider if I really wanted to go into the police force. I was given the option of 2 procedures and told that I should go away and think about them.
Total removal of tumor
The Procedure involves cutting either side of the tumor through the Acoustic nerve and the balance nerve and has the tumor totally removed.
1. The procedure is simple with very little chance of damage to the facial nerve.
2. The procedure would cost less (I think).
3. Although the balance nerve would be cut it would have no noticeable effect on my balance as the balance mechanism in the right ear would take over the function of balance.
4. There would be no re growth of the tumor.
5. I would no longer have tinitus.
Severing the acoustic nerve would render me completely deaf in that ear with no chance of hearing in the left ear again.
The police force would definitely not accept me.
Should I lose hearing at any time in the future in my right ear I would be completely deaf.
Hearing preservation procedure
This procedure involves hollowing out the inside of the tumor and peeling the tumor (much like an orange) away from the acoustic nerve. The tumor is then collapsed and removed.
1. This technique would leave me with the acoustic nerve intact.
2. I may possibly be able to use a hearing aid (but that is not certain).
3. Should something happen to my right ear I would not be completely deaf.
4. I could still be accepted into the police force with the possible use of a hearing aid.
1. The procedure is more complex to perform.
2. There is a higher risk of (but not much) damage to the facial nerve.
3. Hearing in my left ear would probably not be any better, could be worse, but statistically would probably stay the same.
4. My tinitus in my left ear would probably not be any better, could be worse, but statistically would probably stay the same.
5. Tumor re growth could occur?
In either case I will no longer be able to SCUBA dive as this activity tends to increase the risk of ear infections / problems. And therefore could render me completely deaf should damage occur to my right ear.
After careful though based upon conversations with friends, the literature of statistical outcomes of prior procedures ( now 4 years old ), and discussion with the surgeon, I feel that ongoing post operative headaches and facial nerve damage are these days not commonplace in the hearing preservation procedure.
Went to Pathology at Frenchís Forest to have blood taken for a test. And then went over the road for a chest x-ray.
Advised by my local doctor that my chest x-rays are fine as is my blood test. Advised that my cholesterol is too high and there is a prescription there for me to go onto medication. I advised that I would pick up x-rays, blood test results and prescription on Saturday.
Called surgeons office and spoke to his secretary. I advised that I have the chest x-rays back and the blood test and they were both fine. Asked where I go from here. She advised that she would prepare a quote for the surgeons surgery fee and that I should contact the Anestatists office at St Vincentís hospital for a quote on cost. Was advised that the assisting surgeons office would contact me after I book the surgery and provide a quote.
Called My tax agent and was advised that any out of pocket medical fee I incur above $1250.00 is tax deductible at 20 cents in the dollar.
Rang St Vincentís Anesthesiology department to find out of the approx cost of Anecdotist. Was advised that as I have not booked a date they did not know what anecdotist would be on that day. However based on the highest fee, the procedure and the length of the procedure I could be looking at a fee as high as $2500.00.
Went down to HCF this morning to find out about my hospital cover. Was told that I had an excess of $50.00 per day for a maximum of 8 days. Which means I pay $50.00 per day while I am in Hospital. Any other charge above that (x-rays, drugs, bed, theatre fees) they would pay for.
My GP called home to advise that I should go up and have a kidney ultrasound as the as some of the blood test results were higher than normal. No rush, anytime in the next month.
Advised by the surgeons secretary that they could bring the operation forward to tomorrow at a reduced rate as the surgeon had a class and the original patient opted out at the last minute. I told work, went home then off to the doctors office. I was advised by the surgeon that he would be cutting the nerves and taking the tumor out whole ( I did not have a say in this ). Walked up to the hospital.
The day of the operation
6:30am nurse came in and gave me a pre-op injection in the hip. Waited in bed for the trolley to arrive. I broke out in a sweat and got tingly all over. Trolley arrived a few minutes later and I was taken down to the Anesthetists room to be prepped. Anesthetist shaved my arm and began inserting needles (hurt like hell). I was then given gas Ö. Ö. Lights out.
On awaking I had been put back into bed. Noticed people in the room making a fuss over me and was advised all was well. Fell asleep
9:00pm I awoke to find myself in a different room and to find the surgeon in the room also. Was asked who I was, Where I was and what day it was.
Very bad headaches probably due to my neck being dislocated during surgery. Back of neck aching and also back of eyes hurting . Eyes hurting so bad I am unable to really open them. Did not eat.
Still getting headaches, neck pain and eyes aching. Still not eating. Given Panadol for headache and water. Threw up. Given an injection to make me sleep. Having bed spins. I am able to close my left eyelid only about 1mm. Am unable to move mouth on left side. Am unable to make any expressions on the left side of the face due to interference with facial nerve. Very dizzy due to loss of balance nerve on left side.
Still getting headaches, neck pain and eyes aching. Still given panadol and water. Threw up. Was given injection through my drip to stop me being sick. Was encouraged to get out of bed but threw up . Unable to sleep. Ate some jelly. Very dizzy, difficult to walk.
Still getting headaches, neck pain and eyes aching. Still given panadol and water. Ate some Jelly.
Unable to sleep for more than 30 minutes at a time due to sore neck and headaches. Beginning to hallucinate and am having nightmares (told this was due to the drugs). Very dizzy, difficult to walk.
Still getting headaches, neck pain and eyes aching. Still given panadol and water. Got out of bed and went for a walk a few times. Still having bad dreams and hallucinating. Asked for icepack for neck pain. Seemed to help. Able to eat Jelly, Porridge and drink tea and eating fruit. No solids. The smell of most of the hospital food makes me nauseous. Still dizzy, walking a bit better.
Still getting headaches, neck pain and eyes aching. Still given panadol and water. Went for a few walks today. Bowels starting to work. Went home at about 10:30. Still having to sleep inclined in bed and waking up with severe headaches.
Headaches, neck pain and eyes aching very badly now. Panadol is no longer working neither are the icepacks. Am eating a little bit. Will have to talk to the surgeon as I cannot continue like this. I am trying to sleep sitting up now as the pain is so bad.
End of Week 1
Went to Chiropractor Re the neck pain and sore eyes. He would not put my neck back due to only 7 days out of hospital. Rang surgeon and mentioned the headaches and was advised to take VOLTAREN. Once I had 2 of these the headaches and neck pain almost gone within 1 hour. Still unable to sleep laying flat though and still waking up with terrible headaches. Still only able to sleep for about 1 hour at a time. Still having nightmares.. No improvement with facial nerve. Have noticed that my legs have lost a lot of muscle bulk.
End of Week 2
Still taking VOLTAREN. Am able to sleep laying flat now. Nigh mares disappearing. Am able to sleep for 6 hours at a time now. Still waking up with slight headaches. Walking better. Still dizzy though. Neck still dislocated will go up later in the week to have my neck put back. Eating like a horse. Still having naps through the day. Still no real movement of facial nerve. Jaw is aching badly now, not sure why.
Woke up early and yawned. Heard a loud crack in my Jaw (must have been dislocated as it has been very saw). In the morning almost all the soreness in my Jaw was gone. I have gone off the Voltaren medication now.
Made an appointment to see the Chiropractor. He managed to fix up my neck and back. However he says that my top vertebrae is out and he is unable to move it as it is still too tight. I have made an appointment with him for Monday 09/12/2002. I am also sleeping a lot better now that he has put my neck back. My balance is getting better although slowly. My face does not appear to be moving although I notice that when I blink now my left eye is just moving. I will feel a lot better when my face begins to move some more. My eye is the most irritating thing to bother me now as it tends to dry out in a slight breeze or in an air conditioned room and I have to close my eye with my finger or wear an eye patch. Itís still hard to open my mouth. I donít think my jaw is out anymore. I think it is a combination of the hinge of my jaw being close to my left ear and the fact that the left side of my face doesnít move.
End of Week 3
Went to the Chiropractor again. My neck is getting better. He is still unable to move my top Vertebrae.
Last trip to Chiropractor. Neck is feeling much better. Chiropractor believes my jaw is aching now due to the muscles on the left side of my face not working.
Sleeping well. My face doesnít feel as twisted up as much. I am talking better. I was told by one of the guys at work (who lost the balance in his ear) that it took him 3 months for his giddiness to disappear. My ear is very slowly moving back to itís normal position. I have been sleeping on the left side now for about a week and a half.
Jaw not as sore today.
Dizziness is much better now and I have been driving the car for about 2 weeks. As it is summer I have occasionally been having a shandy (beer and lemonade). At first I had a few headaches but no longer. I started back at work on the 6th of January and the busyness of the place is doing my dizziness wonders. At this rate I think my dizziness will be completely gone in about 2 weeks. I went to the physio last week and had been given some exercises to do and today I felt my face move when I smiled for the first time. The movement of my eyelid has improved only slightly and it is still the thing that irritates me the most. The scar on the left side of my head has now pretty much healed (although from time to time I scratch off dry blood ) and my ear has moved back almost to itís original position.
I have not entered anything for a while. I started Physio about 7 weeks ago. Since then my mouth is not as twisted. I am not as dizzy, although when I am at work and working hard I find myself getting a little disoriented at times. My mother tells me the scar on my head is not as noticeable.
The muscle in my cheek is beginning to move (slowly), but I am unable raise my eyebrow on my left side and my eye will still not blink ( I think this could prove to be a problem as the winter cold approaches ). I am able to close the eye while laying down or sitting in a chair. While standing up though it will only blink on itís own about 3mm.
I have my doubts with the physio, I canít see that the exercises I am doing are really doing anything. Rather, the improvements I am seeing are coming naturally as the nerve gets settled in.
(7 months after the operation)
It has now been 7 months since the operation. I gave up going to the Physiotherapy. The cheek on the left side of my face moves a lot more if I smile, however I am unable to raise my eyebrow or the corner of my mouth. Although my friends say my face is looking much better, from my side of things it gets pretty uncomfortable, especially when I go out. I am very self-conscious of the fact that my mouth is crooked when I talk. I also donít like going to loud restaurants, as I cannot hear the conversationÖ. and I feel a bit left out. Someone commented to me that they thought I had had a stroke.
My dizziness is still there and itís recovery seems to have slowed a lot (although I can drive OK and I think the reason is due to the fact that my head does not tilt from left to rightÖ unlike walking) I have fallen over about 3 times. My dizziness is bearable only because I am getting used to it, but there are days when I exert myself and it becomes worse. The good news is that my eyelid seems to be getting stronger and I am not really conscious of it anymore except when I have bad days.
I have put on weight and am now 13 stone ( I was about 12 to 12.5 ) and I am faced with the choice of either going to the gym to work it off and getting dizzy or just putting on more weight.
( 2 Years after the operation )
2 Years after the operation and I am no longer dizzy. In fact I have taken up motorcycle riding. I still have limited movement on the left side of my face, but it is of such little bother to me that I donít really notice it anymore. My left eyelid still doesnít close completely unless I force it, but it too doesnít bother me.
My face still twitches which is an indication to me that the nerve is still getting better.
I have dropped back to 12.5 stone ( 80Kg ) Ö this seems to be my normal weight.
A couple of weeks ago the surgeon called me into his office so he could follow up on the work and see how I was. I was asked to get a CT scan done and send it in to him so he could make sure everything was still OK.
I havnít heard anything back from him yet as I only dropped off the scan the other week.
Will keep you posted Ö..
( 4 Years after the Operation )
Things are as normal as they will ever be. My eye still does not close completely and the left side of my face still does not feel the same as the right side. But I don't notice it anymore and my friends have told me that I just look normal. My face still twitches and still is improving even after all this time.
Some Sunday mornings I will go for a spin on the bike down to Manly for a coffee and I will bump into my surgeon and we will have a chat.
I have also made a lot of friends since taking up riding a motorcycle.