Larry Sher

Larry Sher

DOB 24 September 1956

Melbourne, Australia

Diagnosed September 2002

Operated on November 2002

Regrowth discovered November 2005

Would I do things differently if I had the chance – absolutely!

Am I angry at this affliction – Yes, Yes and Yes

 

Headaches, some rather ordinary medical advice and attention, single sided deafness and my tumour is still there! These are the outcomes of my Middle Fossa surgery to remove an Acoustic Neuroma.

I was diagnosed with an Acoustic Neuroma that was around 22mm in September 2002. What a shock to the system that should have been but displaying all the traits of too much testosterone, I didn’t seem too perturbed by it at the time but alarm bells should have rung and I shouldn’t have been so blaze’ about it.

 

I was finding it difficult to hear people on the phone; it was getting increasingly harder by the day. I concluded at the time that it was my mobile phone playing up but as it progressively got worse and it was starting to affect my work, Naomi, my wife, pushed me to go to the doctor and see about it

 

Go and see my doctor huh? – well, I didn’t really have a doctor, apart from a sore back from time to time and the odd cold, I never really went to the doctor. Anyway Dr N was very good. He had a look down my ears and of course couldn’t see anything It would have been good if he could have grabbed his tweezers and yanked the AN out through the ear but as we know, it’s a little more complex than that.

 

Dr N thought that my problem might be a blocked eustation tube as I had been doing a little flying at the time. It didn’t really feel like a blocked ear post altitude flying but I thought I would rely on the doctor’s view. I honestly thought nothing of the situation at the time. Dr N gave me some jaw exercises to do and stressed to come back in a couple of weeks if it doesn’t get better.

 

Come back in a couple of weeks – yeah right, I thought. Just another excuse for another fee. Anyway, a couple of weeks went by and no improvement. I tried a number of jaw exercises and hitting the side of my head to try and free up the hearing like one does when water gets in the ear after swimming, all to no avail.

 

I went back to Dr N who then suggested that I go to a hearing specialist and he duly wrote me a referral. I rang Dr H‘s practice and the receptionist informed me that Dr H was going on leave in two weeks so she doubled up a booking and I went to see him.

 

I was put through the mill with hearing tests and the outcome – Dr H suggested I have an MRI. He didn’t discuss the potential issues at all. On the other hand, I didn’t bother to ask (idiot).

 

After having the MRI and the results sent to Dr H I received a call the next day from Dr H’s office and was told to come in straight away as he was going on holiday the next day. I scuttled along in the afternoon to be informed that I have a growth in my inner ear and to go and see an ENT surgeon. He recommended Dr C and was glowing of his credentials by acknowledging him as this bright young specialist. Again, was I concerned, not really. Should I have been – absolutely.  I didn’t even ask many questions if one. I guess I had the “she’ll be right mate” attitude and this will just go away.

 

I made an appointment to see Dr C and he organised another hearing test, which seemed strange to me at the time when he had the results of my previous test just a few days earlier. Hindsight is a wonderful thing, he made me do the test because it’s another fee for him. Sorry if that sounds cynical but I believe my situation warrants being cynical as other examples prove further on into my story. Dr C looked at the MRI film and confirmed to me that I have an Acoustic Neuroma. He didn’t seem that perturbed by this discovery so I wasn’t either. I guess it was just run of the mill stuff for him. I mean, who am I, I’m nobody to him other than a pay cheque. Naomi, who was and is a rock with all of this stuff, was quite concerned even though neither of us knew much about it. Anyway, Dr C advised me that the growth was small enough to have a Middle Fossa surgical approach applied and this was the newest technique that gave the best result for hearing preservation, and that I should have it as soon as possible. Yeah, what about everything else Doc!!!

 

The only other bit of useful information that Dr C told me was that I might experience headaches for a few months. A few months! that would have been great but more of that a little later.

 

Dr C then advised me that the operation will be in a months time and he will be assisted by Dr F. Dr F is the most experienced ENT surgeon in Sydney but wasn’t taking new patients at the time. He would assist in ops but not be the lead surgeon. That meant I had to pay for two surgeons. I later discovered that Dr F does them on his own. I could have saved a bucket load of money as my health fund re-imbursement of the surgical fee was so small it was disgraceful.

 

The day came without too much trepidation along the way. I didn’t do much research as I trusted the medicos (second time I have been an idiot).

 

As I am self employed, I finished my contract a couple of days before the scheduled op (in November) and on the day, fronted up but was told that the op has been cancelled due to Dr F becoming ill. OK, I thought, I’d geared myself up for this op and now find that it’s a false start. It was rescheduled for two weeks time. What do I do now? My work is long term consulting, I don’t do short term work. I was basically not doing anything in that time until the day re-appeared.

 

I fronted up to the hospital and was told that the op is still on. Whilst I wasn’t doing high fives or anything, I certainly was relieved because I just wanted it over with so I could get on with my life. I must say that I didn’t really understand the procedure, (idiot for the third time). I mean, the medical terms really go in one ear and out the other (excuse the pun). Dr C did tell me that I would be able to get back to work part time in around 6 weeks.

 

I spent the night in the room and around 6.30am a nurse came over and said that I would be prepped in half an hour. I decided to have a shave and a shower and make sure I was fresh – not sure why but hey, I did anyway. The nurse came over and jabbed me with a needle in the leg and that was it. I was out like a light. The next thing I knew was when I woke up in a fair amount of discomfort with a hulking great bandage wrapped around my head. I over exaggerated when I said, woke up. It was more like, partially opened my eyes and had some vague realisation of the environment around me.

 

Apparently the op took 7.5 hours, not that I would have known. As I was waking, I really didn’t feel like waking. I felt awful, and not that I knew at the time, but it was going to get a whole lot worse. I remember not being able to communicate with my family very well who, were trying to talk to me. One sentence that I did hear clearly was Dr C saying that I was doing really well and the op was a complete success and they got all the growth out. I should have done some handstands on the table after hearing that but of course that was not possible. I should have also recorded Dr C’s statement and played it back to him later.

 

As the morphine and anaesthetic wore off, my head was hurting rather badly and during the first night, I don’t think I slept at all. Every 5 minutes, and it got to the point that I watched the clock for the time, I would get a horrible pain go right through my body from my head, through my mid riff, the lower region and into the legs and at the same time, feel like I was falling down. Rather nauseous I was. This happened right through the night and all I was given was panadol (low level pain relief), which didn’t do anything. I think I was on morphine but it didn’t seem to really be doing much, or was the post surgery pain that high that the morphine was working? I’ll never know and quite frankly, don’t want to know.

 

I must say that for a person who enjoys a good belly laugh and fun time, I was probably feeling the worst I have ever felt. It wasn’t very exciting in Intensive Care, especially when others were moaning and coughing and doing everything to prevent me from sleeping. Mind you, sleeping was pretty hard anyway with all the interruptions I got from the nurses checking blood pressure etc. The nursing staff were fantastic through my hospital stay and I suppose they have a process to go through but I really wanted to be left alone.

 

After spending 24 hours in Intensive Care and finally getting over those awful nauseous spells, I was moved to my own room on the ward – YES. At last, I would be able to recover peacefully.

 

My family, led by Naomi and my two daughters Melissa and Amanda were (and still are) terrific. My mother and brother and sister in law have also been very supportive although they live in Melbourne which is 1000km’s away so daily interaction is not easy. They did come to Sydney for the op and my mother stayed for about a week – I guess that’s just a mother thing to do.

 

I recovered fairly quickly (3 days) with the very short and infrequent visits from my ENT surgeon. These visits weren’t separately paid for so I didn’t see much of him post op. Cynical as it sounds, I am convinced that it was all about $ for my surgeon. Unfortunately this process has left me very cynical about some of the medical fraternity.

 

My recovery was fairly swift and I was back at work six weeks after my op but one major and one minor side effect. The minor one is vertigo. Whilst not too bad, I can’t walk a straight line and I have to look down. If I’m walking and look up at a house or something, I’ll stumble. I can live with that.

 

My major side effect has been headaches. Since November 2002 until now (August 2008) I am yet to receive any major relief. I have a headache every day, usually its low level but that still wants me to grab my head and toss it away. I have been looking for a second hand head shop but yet to find one. Maybe I should advertise on the Internet!

 

At times, probably on average, a couple of times a week, I will get a major attack. It feels like I am being hit over the head with a sledgehammer over and over again. I can’t function, nothing relieves the pain. I will put an ice pack on my head occasionally and that just makes my head cold, very little relief is given. I have tried a number of different drugs to combat this but only Neurontin seems to help. Interestingly, if I take a lot of this drug (like 1500mg per day), I seem to get the most relief but I can’t really work as it makes me sleepy so I have to reduce the intake to 1200mg per day. This is about the best balance because anything less and there is virtually no relief.

 

There are “migraine” relieving drugs but these are after the fact and the one recommended to me has a side effect of heart problems. Given my father and grandfather (on my mother’s side) both had heart conditions, I was not willing to try it. I attended a pain management clinic a few times and had multiple nerve block injections in my head but they didn’t help. At this point, I was at my wits end. Why is this happening to me. Football injuries and their associated pain was bearable because I loved playing football and new that I would recover and life would go on. I had my share of dislocated fingers but they are seen and can be fixed but headaches, they just pounce on you for no good reason. Although in my case there is a cause.

 

I saw a raft of neurologists to get different opinions for headache relief and this was purely a waste of money and time. One, went through all the standard tests checking my knee reactions, whether I could walk a straight line etc. This went on for 45 minutes and he never communicated with me as to why he is making me do this.

 

Yeah, beauty, that was useful, not! I then saw a different neurologist, a Dr G who seemed pretty good and was a so called headache fixer. Well, he told me that there are a number of options and wanted me to try a drug called Topomax first. He did warn me that the drug can cause glaucoma as a side effect and if any changes to my eyes occurred, to call him. After a few days on Topomax, my eyes became very watery. Well, I wasn’t prepared to lose my eyesight and have SSD. So I followed his instructions and called him, and called him and called him. I left three messages for him to call me over a two week period.

 

What a nerve, what an absolute …..  Words actually failed me at the time and still do. Eventually (in the third week after my calls) I received a phone call from him. I was shell-shocked and should have told him what I thought of him at the time but I didn’t. I explained to him that the Topomax was making my eyes watery and they cleared up after a few days after going off the drug. I asked him what the other options are and he said to make an appointment and we’ll go through them.

 

“You gotto be kiddin”  I said to myself in the strongest of Aussie accents and tone. Another $340 – no way Hose’ why couldn’t he tell me the other options (if there were really other options) over the phone? Well, I didn’t go near Dr G from then on.

 

During this period, I sacked my ENT surgeon, Dr C in favour of the more experienced Dr F and the reason for this is very clear and obvious as I will explain.

 

At a routine check-up in 2005, three years post op, Dr C has my MRI scans which I was doing six monthly, but this one was different. The radiologist report indicated that there was a mass growing where my AN was removed, well so called removed. Dr C looked at the scan and said the radiologist is wrong, there is nothing there. Well, you’d have to be blind Freddy to not see it. I challenged him that the radiologist had spotted something and I saw it too. Dr C, in a confident but defensive manner, told me that he’d get others to view it at their next team meeting the following week.

 

The time went by and I never heard anything so I rang and made an appointment to see him. At this appointment he was rather apprehensive to tell me that consensus amongst his colleagues was that the AN has grown back. He then proceeded to tell me that he left “the shell” of the AN when operating so they wouldn’t damage the facial nerve. This was news to me after three years! Why, oh why, wasn’t I told this at the start?

 

I am now feeling numb. I went through significant pain and suffering (still am) as well as the financial trauma of the pre and post op down time and now, the AN has grown back. I was rather shocked and horrified with this news. However, I decided to now take matters into my own hands and be the leader of my medical destiny, not this Dr C who I was unimpressed by, to say the least.

 

My first appointment with Dr F was fruitful, but by this time, I’d begun significant research into AN’s and was aware of the two other options to surgery which are radiation treatment and watch and wait. Dr C mentioned radiation treatment in a one sentence spiel as I was leaving his rooms but he then quickly said – “that procedure isn’t any good for you” (idiot again, I should have investigated this option further)

 

Dr F looked at my scans, reviewed my file and advised me that I should never have had  the op in the first place. My tumour was small enough to be a watch and wait candidate. Watch and wait – this is news to me, so I didn’t need the op – why didn’t Dr C tell me of this option?

 

Also, Dr F doesn’t do Middle Fossa surgery anymore because of the downstream effects of headaches and the hearing preservation percentages are not that wonderful. Hindsight is a wonderful thing huh? Dr F did discuss radiation treatment and was happy to recommend that I explore it. Dr C never did because he wouldn’t have an earner out of it, likewise doing nothing – no fee for that is there?. Dr F is a very experienced surgeon and I don’t think needs the money so was happy that I get the right treatment.

 

I saw Dr S about radiation and he advised that I would be a good candidate for it and let him know when I decide. He was very thorough and spent 45 minutes explaining how the radiation treatment works, the side effects, the risks and the benefits and his fee was very reasonable.

 

It’s now 2008, three years since discovering my re-growth and I am still in watch and wait mode. As long as the AN stays under the 25-30mm, I will be happy –  happy as Larry!

 

What do I experience now?

 

There are many depressing times where I wallow in a sea of, I won’t say depression, but anger, annoyance, despair and fear. I do work but very rarely do I put a full day’s work in. I attend work for long hours but this is because I take very long breaks. Most of the time around two to three hours each day. This is because I can’t concentrate for long periods. The drug makes me sleepy and the headache pain is too much to put up with.

I have spared my family from a lot of the headache pain that I get. I complain a few times but usually am able to get on with things. A lot of the time, the pain is so bad, it brings tears to my eyes and I consider this to be a very private thing. My family don’t see this because I don’t like to worry them any more than they do. I’m not getting any younger and am concerned as to how I will cope with this pain in my twilight years. Fortunately, I am an advocate for “power of the mind” and when really tested with my headaches, I am able to block some of this pain but even then, it can be extremely debilitating.

 

So what are my key concerns with my affliction

 

1. My head is still very sore and the headaches are debilitating,

2. I have an issue with certain types of noise / music as they can drive my head into convulsions.

3. I can’t wash my hair and dry it with a towel easily. It takes time and I have to be very gentle.

4. I get tired faster at the end of the day due to the quantity of Neurontin I take.

5. I can’t yell or be yelled at or my head hurts too much.

6. I have to walk with my head looking down to the ground.

 

What have I learned?

1. The main lesson that I have learned is to make the medical decisions myself, after listening to the “experts” but making my own decision not just acting on their recommendations.

2. Research, do lots of research and challenge the medico’s with that research.

3. There are too many medicos in it purely for the money and they think that they are just “it”. Yes, they are very clever and possess a skill that is life saving, but hey, we are all human beings, no need to treat non medical people with that much arrogance.

4. Learn to laugh. Amongst all of this misery, hurt and lies, I enjoy trying to have a laugh. Even though a good old fashioned belly laugh hurts my head, it’s worth it.

5. Engage your family or close friends or at least one person that you can share the ups and downs with.

 

The Future?

 

What’s next for Larry Sher? At this point in time, I am happy to watch and wait until my regrowth either gets too close to my brain stem or starts to get too big for radiation treatment. I have decided that if I have to do something about my AN, this time, I would radiate the thing. I am very reluctant to have surgery again.

 

I am also researching various hearing devices like a BAHA or Transear. Baha requires surgery and I am loath to do that. Transear is fairly new and not available in Australia at time of writing. A standard hearing device won’t work for me, I need a device that relies on bone conductivity.

 

I continue to struggle through work, I have some really bad moments but then I have some really good ones too. I try and harness those to the best of my ability and put all the rotten stuff behind me, which I can’t do anything about anyway. I try and socialise as much as possible particularly with those I can have a really good laugh with because that is the best recovery medicine of all but I don’t go out at night that often because I get very sleepy or am in too much pain.

 

The AN forum has been fantastic. I have made a lot of friends on this site and have contributed to some silly but funny writings which helps emotionally. I also think that I have helped newly diagnosed people with some advice and experiences and I feel better within myself for this.

 

Forums like the AN one is usually frowned upon by the medicos as they believe that conditions are unique within each person and other sufferers can’t help. Well that is not right. Just being able to offer unconditional support to people that don’t know where to go, to offer choices when none are given (due to $ self interest), to offer some laughter and humour in times of despair. These things don’t cost anything and are genuine.

 

 I need to be in a lot more joyous and peaceful surroundings so that life can be enjoyed to the fullest. We did this a few months ago and moved out of the city (rat race) and I must say that it is far more relaxing than before. The headaches haven’t gone away but I don’t feel as stressed as I used to.

 

What is my one wish?

 

To have one day without a headache without taking any drugs. JUST ONE DAY!