OK, I'm officially psyched out.

Well, after two psychologists appointments in two days, I think that it is safe to say that I am officially psyched out. Last time I talked to you about the clinical psychologist, and today it was the turn of the neuro psychologist, and as yesterday, I had a list of questions that I wanted to know:-

1. What were all the purposes of this appointment?
2. What exactly are all the tests that you will run?
3. What are the disqualifying factors?

As this procedure was not invasive I wasn't really concerned accept for one thing. Could this appointment exclude me as a candidate for surgery? The short answer was yes, but as it happened I had nothing to worry about.

So, what happened? First, we started with the general chit chat. I asked her my questions and she gave me a brief explanation of what we would do. From then on it was all testing. There were tests for my memory (both long and short), cognitive reasoning, IQ, problem solving, mental stability, and mental health. I was a little bit annoyed by this last section. She asked some very strong questions, such as "What do you think the worst thing that could happen is?" and "What will you do if the procedure doesn't work?" and then we explored these further in quite a lot of probing detail. She also didn't like my answer to the former, when I didn't acknowledge death as the worst thing that could happen. The fact is, the way I see it is I could have a stroke and live 40 years as a vegetable. She also didn't understand when I said I did not fear death. Don't get me wrong, I love life and I am not looking to hasten my demise or take ridiculous risks, but death doesn't scare me and I don't think she quite understood this. I also felt that this was covered by the clinical psychologist and I didn't really want to cover it again.

Anyway, at the end of it, I got the seal of approval to go ahead, and a full set of psychological benchmarks to compare against, God forbid something does go wrong with the surgery (which is the main reason why we did this). Now we are just a month out from my surgery I will take you through my checklist for getting ready in my next post. Until then, stay well:)

The Games Begin!

Well, today felt like the first official day in the lead up to my brain surgery. Being quite a major operation, I have a few tests and consultations to attend in the next few days. They are:-

1. Consultation with a clinical psychologist
2. Consultation with a neuro psychologist
3. Consultation with neurologist
4. Sedated MRI
5. CT scan

So today I trotted off to the clinical psychologist. I was sort of crabby before I got there as I already see a clinical psychologist, and I couldn't see the point in consulting another one. I would have thought that a report from my psychologist would have been enough, but the surgeon insisted I saw theirs, so off I trudged. After 15 minutes looking for a parking space (then giving up and going to the secure parking) followed by 45 minute wait for the psychologist, I was a little cranky.

But finally I got in to see Victoria Miller, a smartly dressed, professional looking lady, but at the same time a very friendly, comforting and disarming demeanour. My first impression was that she was very good at her job, and she didn't prove me wrong. Seeing as though I had struggled to see the relevance of this consultation, my list of questions that I had prepared was relatively short. They were:-

1. What do you wish to achieve from this session?
2. Is it really necessary?

I asked the second question first. I wanted to get it out of the way, but I did not want to appear cynical. So I asked if this was something that my current psychologist could do and did I really need to be here? Her answer was that she probably could, but Precision Neurosurgery like to get their own assessment. So what was the purpose of the session?:-

1. Make sure I have no underlying undiagnosed mental disorders like Bi-polar or depression. Since I had already been diagnosed with depression, this really was not much of an issue. They needed to know I was being treated, and as I was there was no need for concern.
2. Make sure I had a strong support network of family and friends and offer an extra avenue of psychological support if needed. I have a very supportive wife and a close family, and if that failed I still had a good network of friends I could rely on, so not as issue for me.
3. Make sure my expectations from the surgery were realistic and what if it failed to work or went wrong. Well I will focus on my fears from the surgery another time, but I fairly sure she was happy with my answers.

So the big question is was the session necessary? I would have to say yes, it was, but probably not for me. The doctors need to find out these answers, and if I gained anything from the session, it was the comfort that the doctors were being thorough, and they cared about my general health (both mental and physical) as well as simply trying to cure my tremor. I guess that in itself was simply enough to make the consultation worth while.

Well, tomorrow it is off to the neuro psychologist. Rest assured I will let you know how it goes. Until then, stay well:)

My Brain Needs Stimulating

Hi all, I hope you are all in good health. My last four posts have all been about preparing for surgery in order to make you stay as smooth as possible and assist recovery. I was then going to write about how to cope with situations whilst you are actually in hospital. However, I will be having Deep Brain Stimulation surgery for essential tremor in about six weeks and have just started going through the testing process in order to be prepared for my day under the knife, and I thought it would be extremely valuable to write about my experiences as they happened.

So I feel a good place to start my DBS series is to answer the question "why am I having it?" After all, my life is not in danger without the surgery and my friends and family think I look fine and interact with society perfectly well and they understand my affliction and it doesn't bother them. Well it bothers me! I live with it 24/7 and I want it gone. I think that the best way for people to get a better understanding of what a tremor patient has to live with is to give you a snap shot of my morning. You can try it if you like:-

1. Alarm goes off. Accidentally knock it off the bed side table trying to turn it off.
2. Shower - Nearly scold then freeze yourself trying to get the water temp right.
3. Shower - Drop soap three times.
4. Shower - Poke self in eye trying to wash hair and face.
5. Shaving - Yeah, you can figure this one out yourself.
6. Teeth - Put too much tooth paste on brush, and get some on the bench.
7. Teeth - Clean up bence.
8. Teeth - Ouch! Poke self in back of mouth with brush.
9. Clothes - Try buttoning shirt, give up and wear a t-shirt.
10. Clothes - Slip-on shoes only, laces too hard.
11. Kids - Dressing son too hard, send to his mother.
12. Breakfast - Spill milk on floor
13. Breakfast - Clean up milk (kids are getting impatient)
14. Breakfast - No tea or coffee. Only drinks that are out of the bottle
15. Kids - Accidentally hit daughter on her head with the hair brush (tears)
16. Phone - incorrectly enter PIN twice, so get wife to do the third and final try.
17. Leaving - Unlock door to house accidentally dropping keys in the process.

Finally I have left the house. My work day is yet to begin and I am already exhausted. I haven't even tried to write or type or even eaten properly. As with many diseases, especially movement disorders, essential tremor governs the things you buy, the activities you partake in, where you go, the choices you make and the people you see. Arresting the tremor is not simply a convenience thing, it is a fundamental shift in the quality of ones life and unshackling the burden that enslaves its sufferers everyday.

For fellow sufferers of movement disorders, I hope that this helps validate what you have always known, and for carers I hope that this will help you better understand what a sufferer has to go through and why they make the decisions that they do. Next week I am off to the clinical psychologist and neuropsychologist for assessment for DBS. I will let you know how it goes. Until then, stay well:)

What Should I wear? Part 4

So what should you bring to hospital? Some people say bring as little as possible because the hospital will provide everything you need. I disagree. Let me use the luxury holiday analogy. You are at a beautiful five star resort, everything is beautiful, waiters and hotel staff cater for your every need and your suite is cleaned every day and your bed linen changed. But even with all the luxury, nothing is quite as comfortable as that first night back at home in your own bed. Now hospitals are not like five star resorts, and unless you live in a clinic they are certainly not like home. But if you can bring a little piece of home with you, then it will make you feel a little more comfortable. Here is my list of what to bring:-

Loose comfortable clothing (one change per day, max of three) - It's not the L'Oreal fashion show, or dinner at the Ritz. Comfort is king. Tracksuit pants and t-shirts are great. Try to avoid buttons and tricky clothing it may seem trivial, but simple things like that can seem like a real effort. Slip on shoes are also preferred as it can be difficult to bend over to tie your shoe laces.

Pyjamas and dressing gown - because they are preferential to the hospital gowns. Hospital gowns are uncomfortable and leave your arse hanging out of the back. You will have to wear a gown at some point as you aren't allowed to go to surgery in your pyjamas.

Entertainment – Hospitals are boring, and when you are bored, anxiety and stress rise and you have time to start thinking about the discomfort. Bring something to entertain yourself. Books, portable game consoles, portable DVD’s, puzzles etc. Whatever will help you pass the time.

Toiletries – Focus on the essentials more than the luxuries. I bring toothbrush and paste, deodorant and soap. Soap is really important as the tiny soap biscuits they have in hospital are easy to drop and it is hard to pick something up off the floor during recovery. I don’t worry about things like my shaving kit as quite simply I really find I can’t be bothered, and lets face it, it’s not a fashion contest.

Pillow – Super Important! The bigger and the comfier the better. Hospital beds are made of plastic for hygiene and cleaning purposes, which means they don’t breath and you end up sweating a lot. I get a body pillow from spotlight and I pretty much sleep on top of it. After a week of hospital, it’s normally ready for the bin.

Creature comforts – If you are in for a long stay, you might want to decorate your hospital ward with a few things from home. Having a little bit of familiarity around will help you feel comfortable.

Food – Again, if you have someone bring you some home cooking that little bit of familiarity might bring with it some comfort (also, hospital food isn’t exactly 5 star).

General – Don’t forget to bring all your current medications and x-rays, and have all your questionnaires filled out as accurately as possible and sent in advance.

Well, I hope that this helps as my last installment on preparing for hospital. If you have any questions please don’t hesitate to ask. Until next time, stay well:)

What Should I wear? Part 3

Once you first realise that you need surgery you will probably find that your anxiety levels will be greater, and you will think of a lot questions that you will want answers to, so the first step is to know exactly what you are in for. Below is a list of questions that you might want to ask. Please bare in mind that this list is by no means exhaustive.

1. How long can I expect to be hospitalised?

2. What is the standard recovery period?

3. What is exactly involved with the surgery?

4. How long will it take?

5. What drugs will they give me (pre-op, during op and post op) and what are the side effects.

6. Will I need x-rays/ blood tests etc and when?

7. Will I need to go to ICU after?

8. What are the potential problems that can occur?

9. What care will I need on leaning the hospital?

10. Will I need any post-op procedures or treatment?

11. How will I feel after the surgery?

12. Can I expect any nasty surprises? (example is my catheter experience I talked about in my last post)

There is an awful lot to familiarise yourself with, but it is very important and once you have set your mind to the task it is not nearly so daunting. The best way is to make a list of what you need to know, and who best to ask about it. Leave the list for a day or two and every time you think of something else add to it. People you might want to source information from are:-

Your surgeon - With out a doubt the most qualified person that you will have access to about your procedure. Not only are they highly trained professionals, they are getting paid to answer your questions, so don't be shy or feel you are wasting and important persons time, ask away. If you aren't happy with the answers, you are more than entitled to seek a second opinion.

Your anaesthetist - As another qualified doctor, they are obliged to speak to or see you if you request. An ideal person to talk to about the medications you might be given or the effects of anaesthesia.

Nurses - Once your operation is over, your surgeon will normally move on to his next patient and the nurses will start to manage a great deal more of your care. This gives them a great deal more experience at helping you feel comfortable post-op. It is a good idea to go and visit the hospital ward you will go to prior to your stay. This will give you a chance to familiarise yourself with the place (as waking up in the hospital after anaesthesia can be quite unsettling as due to the unfamiliarity) and a chance to talk to a couple of the nurses who deal wit patients like yourself every day.

Other health staff - Physios, psychologists etc. If they have a role to play they can certainly give you the best advice on certain parts of your recovery.

Natural Medicine Practicioners - Can be extremely insightful in suggesting ways to assist in the successful management of your recovery

Other patients - Nobody know exactly what it is like to have the procedure that you are going to have more than someone that has had it before. If you are reading this blog you are clearly no stranger to the internet. There is a blog or forum on just about any disease or operation you can think of. Read the experiences of others, or chat with them to ask questions. I never consulted anyone about my first few kidney stone ops, and after I finally did I wish I had done so earlier. In six weeks I will be having deep brain stimulation surgery. I have already talked to people on the net and actually met one former patient face to face. I plan on talking to and reading more from other patients in the next couple of months.

Next time, what to and what not to bring. I'll give you my opinion on what things I feel will best help you through your hospital stay. Until then, stay wellJ

What should I wear? Part 2

Today I will write about the importance of staying as healthy as possible in the lead up to surgery.

It is important to stay physically healthy, because the fitter and healthier you are the more likely you are to have a speedy and easier recovery. Personally, I try to stay fit by doing regular light exercise. Even a 10 minute walk is better than nothing, and a great idea the morning of your surgery. You don’t want to over exert yourself, or ware yourself out, but to kick start your body in the morning will help you process and eliminate the drugs from your body quicker.

When I have surgery, I normally catch the tram to the hospital, and the short walk to the tram stop is all that is normally necessary to get the heart and body going. (Note: Don’t plan on going home the same way. Always have someone pick you up.)

It is also important to eat right and drink lots of water. The body works best when it is hydrated and had a proper intake of all the daily nutrients, which will make recovery easier. This should be maintained right up until you are nil by mouth or instructed otherwise by your doctor.

When I first started having kidney stones I used to think that the longer I went without eating the better, and sometimes I would stave myself for more than a day. Until one time an admissions nurse said I should have eaten more to maintain my fluid and mineral balance. So for my next procedure I followed her instructions and I woke up feeling stronger and the feeling of nausea I used to get was not present, and now I only get nauseous if I have a long procedure. You will also find that no matter how hungry you are before surgery, afterwards you won't feel like eating much so get your intake whilst you can.

Next time I will write about knowledge. Making sure you are up to speed on all on exactly what you are about to go through is critical. Until then, stay wellJ

What should I wear? Part 1

Hi all, I hope that good health has followed you since my last post.

Speaking of my last post I said that I would write about strategies to assist in the recovery process and minimise discomfort. After sitting down and putting together a plan for my post, I realised that there was an awful lot to write about so I have broken the topic down in to parts.

The first part will cover the most important strategy for coping with surgery and it actually starts before you even have surgery, and that is to be prepared. Preparation is the key. Doing the work now will make life easier later. Preparation is in four sections. They are mental, making sure you have the right head space. Physical, keeping healthy (all things considered). Knowledge, be sure you know exactly what you are in for. And finally, packing, what to and what not to bring.

Mentally, it is very important to be ready. If you are not mentally prepared and your thoughts are negative you can actually worsen your condition and sometimes even impose extra symptoms upon yourself that could have been avoided if you are properly prepared. Personally, I find that controlled breathing exercises and reminding myself of the long term benefits is enough, but if you feel that you need more it would be advisable to talk to a psychologist or counsellor.

Next time I will talk about the importance of maintaining good general health. Until then, stay wellJ

It Does Get Better - I Promise

Immediately after a surgery you will almost always be uncomfortable. How this discomfort prevents itself differs greatly depending on the nature of the person and the operation they have had. Some are obvious, such as pain in the effected area, and some less so like pins and needles or a sore throat. No matter what the discomfort there is one main rule - IT DOES GET BETTER! If you can remind yourself of this and know that relief will come over time, your mind will be stronger and able to cope with the trauma that has been set upon you. If you believe the discomfort will never go away, you will find you will most probably suffer more and for longer. Believe me, I learnt the hard way.

In 2001 I had my first PCNL (Percutaneous Nephrolithotomy). This procedure involved putting a tube in my back left side about halfway between my ribs and hip. The tube was punctured all the way through my kidney and into the collection system where access to the stone was achieved. The stone was then broken up and removed through the tube.

My first mistake was that I didn't have all the facts to begin with, so I had no idea what to expect. I had not asked enough questions and my doctor hadn't given me all the information so when I woke up from the anaesthetic I had a couple of nasty surprises. Firstly, I had a tube down my throat that had been assisting me breath under anaesthetic. Previous operations had always been shorter, and there had been no need for a tube, or it had been removed before I woke up. Secondly, I had a catheter inserted in my penis which I did not expect and stayed there for two days.

Anyway, I was uncomfortable, felt nauseous, had pain and was extremely irritable. I whinged to all the doctors and nurses, but it didn't help much. I was so irritable, my blood pressure had risen and my pulse was up around 95 bpm. I would toss and turn to try and find a comfortable position, I slept very badly, and it was not until all the tubes (four in total) were removed that I actually felt normal.

The second time I had the procedure I woke up in much the same condition as I did before and after the initial feelings of irritability and annoyance I decided simply to accept what was happening and there was no point letting it bother me. I kept telling myself that it would get better and the discomfort would only be temporary. Suddenly the most amazing thing happened. I slept. And not just for a couple of hours, I slept the night. I didn't even get woken by the nurse when she came to do her observations.

In the morning I felt much better. My pain levels were down, I didn't feel quite as nauseous and the irritation in my bladder had almost completely subsided. But most importantly I was relaxed, which meant that my body could concentrate on healing itself. From this point on my recovery seemed faster and easier and I was also in a far better mood, so the time passed quicker.

Please note that just because I had decided to relax and accept the fact that I had just had surgery and the discomfort was part of the process didn't mean I refrained from speaking to the nurses and other medical staff. I also adopted other strategies to relieve my discomfort, I was just much more sensible about it. I will explain what strategies worked for me next time and identify a few other discomforts that one might not expect from surgery. Until then, stay well.

Anxiety and Apprehension - Dealing with pre-op stress

Anyone that has had surgery knows that it is very stressful, whether it be simply having a mole removed, or open heart surgery. In the last two weeks I have had two surgeries and my thought, feelings and anxieties were vastly different for both.

The first operation that I had is clinically known as a cystoscopy with laser stone destruction. Simply put, they destroyed my kidney stone with a laser that they put up into my kidney through the urinary system and blasted it Space Invaders style. Pre-operatively, I had a number of concerns that I needed to deal with or overcome.

Personally, the main stress I had to deal with was purely psychological. Before the surgery I felt fine. I could go about my daily business normally, I had no pain or discomfort but I still had a kidney stone that would eventually cause me no end of grief if left unchecked. Unfortunately though, I found it hard to focus on the fact that I needed surgery now to avoid problems later and instead I focused on the fact that post op I would feel exhausted, in pain and in discomfort, and if I chose not to have the surgery I would feel fine. At least in the short term.

I have dealt with this previously in four ways:

1. Rational Thinking- This requires discipline, and is very effective when your mind has wondered into thinking about the negatives of surgery. Instead, I try to remind myself of the reasons why I need surgery and the potential negatives of what I might go through if I choose not to have the surgery. I find that this helps to suppress unwanted emotions and helps maintain focus.

2. Distraction- Once you have arrived at the hospital and are in the system there is a great deal of waiting around to be done. That is probably why they call us patients. During these times the mind can wander and you start to think about the negatives. I find the best way to avoid this is to keep yourself busy. Unfortunately, hospitals are very boring places, so you have to go prepared to entertain yourself. Books, magazines, portable DVD's, hand held game consoles, puzzles etc are invaluable. Take as much as you can.

3. Thinking about the Finish - If you have to think about the surgery, think about the end result, the benefits you will gain and the potential strife you will have avoided.

4. Drugs- If anxiety still gets the better of you, there is always drugs. You can ask your doctor for a pre-med, however, these days they are reluctant to give you one. Anaesthetists commonly give Medazolam (a sedative like valium) as part of the anaesthetic cocktail prior to surgery, if you are anxious enough and ask nicely they will normally give it to you earlier. My experience with the drug is that I tend to feel great. Worry and anxiety almost slip away entirely. However, one must remember that the drug is there to serve a purpose and not for messing around with.

Another stress that I had to deal with was with my kids. At four and six they were now old enough to know what was going on and they worried about whether I was going to die. Kids aren't stupid, so don't lie to them. I decided to tell them the truth and also let them know that hundreds of people have surgery every day and it is extremely rare for people to die, and those that do are normally very sick and having complicated procedures. My wife also bought a kids book on going to hospital to help explain it. We also let all the children's other care givers (teachers, other parents etc) know what was going on in case one of them became distressed and my wife or I were not around. Fortunately the kids coped very well after our initial chat.

The only problem that I had with my second surgery was really quite minor. After the first surgery my surgeon left a stent from my kidney to my bladder and for the ten days I had it I was quite uncomfortable (I'll talk about this next time). I was actually looking forward to the surgery to have it removed, but with the lack of other anxieties, I became really hungry. 8 hours fasting is fairly standard for general anaesthetics, but that doesn't stop the hunger. It really isn't that big an inconvenience, but the best ways to counter it are to have a nutritious (but not too large) meal prior to your fasting cut off, stay away from food and food smells the next day, and distract yourself.

Well I hope you enjoyed my blog. Please feel free to write to me with any comments or suggestions. Until next time, stay well and I will catch up with you then:)

My first posting!

Dear Readers,

Welcome to my first blog. I hope that those who read find it interesting, and you can find some insights and benefit in assisting people who find themselves in similar situations to what I have experienced.

I will be writing about my experiences in dealing with a variety of medical problems that I have dealt with and continue to deal with, and hopefully help others cope in similar situations, and also discuss things that have allowed me to improve my quality of life. Writing from a patients perspective will hopefully allow me to show a better understanding and empathy for others, compared to your standard health care professionals.

So, what exactly have been my experiences with medical problems? The first time I was hit with a nasty medical problem was in 1994 when I came down with a kidney stone. It hurt like hell, but I will go into that another time. Anyway, three months later, I had another stone, so after extensive testing I was diagnosed with a metabolic disorder known as cystinuria. Since then I have had over 50 kidney stones and 30 surgeries to have them removed.

The other major problem that I have had developed in 2000 and was one of the scariest times of my life when my legs started getting weak. After four agonising weeks, bucket loads of tests and consults from three different doctors I finally was diagnosed with peripheral neuropathy (CIDP) which has left me with weakness and numbness in my arms and legs for the last ten years. To add to my neurological woes I also have essential tremor and depression, and I have also had to cope with the standard colds, flus and other bugs that everyoine gets, just worse because I have had to have my immune system surpressed.

Currently I am dealing with a kidney stone which will be removed shortly, and I will talk about this next blog. In two months time I will also be having brain surgery for my tremor. Until next week, stay well and I will see you next time.