Is it still helping?

Back in May 2010 I wrote this post judging my stimulator and the benefits I had received in certain areas of my life.

So, How Has it Helped?

When I wrote it I only had the stimulator turned on for two weeks.  A year and a half later I thought it would be a good idea to revisit.  Funnily enough I thought that after two weeks it was about as good as it was ever going to get.  And wow, was I wrong.  Since then I have had dozens of adjustments and with each one there has always been a slight improvement.

I guess one of the biggest changes was when I swapped from a monopolar setting to a bipolar setting.  Although there was not that much difference to my tremor, the bipolar setting really helped with my balance and co-ordination, and with a monopolar setting I also suffered from excessive sweating, which also seemed to clear up.

Here are my evaluations:-

Brushing Teeth 9/10 - I don't notice any difficulty now, so really good.

Showering 6/10 - Much better, but I still cannot close my eyes under water without holding on.

Getting Dressed 7/10 - buttons, zips, cuffs etc. are all easier, but not perfect.

Writing 6.5/10 - Good, but although the tremor is not a factor, there is a some rigidity which makes it harder.  I could fill out a form, but I wouldn't want to be writing any essays.

Typing 7/10 - I still only use my index fingers, but speed is much better.

Cooking 5/10 - Also made easier by some of the aids I have got (see here).

Gaming 5/10 - I find it easier than before, but not easier than a long time before.

Eating 8/10 - It is much easier now, unless I am eating really tricky and delicate foods like prawns .

Drinking 8/10 - I can drink with one hand on a good day.

Using the Remote 8/10 - Funnily enough I watch less TV now, but when I do it is easier.

Peeing Standing Up 10/10 - Ahhhhhhhhhhhhhhhhhhhhh!

Wiping 10/10 - It used to be messy.  Now it isn't.

Overall, I am really happy.  On average I would say 8.5/10.  Given where I was I have had a huge improvement.  Having brain surgery is no small decision.  But I'm glad I did it and if I had to do it again, I would.  Until net time, stay well:)

Lawyers, back off!

I was on a patient chat room the other day and a fellow patient mentioned a friend who had had a operation called the "liberation procedure".  The patient in question had multiple sclerosis (MS), and as CIDP and MS are quite similar (both demylenating and auto immune) my interest had been peaked so I did some more research.

Unfortunately, I have to admit that I don't think that the liberation procedure would be suitable for CIDP patients as it is supposed to relieve pressure on the brain stem by widening the veins in the neck.  The demylenation in CIDP patients is in the peripheral nerves.

But I was astounded by some of the things I read.  But before I tell you what let me give you a little background.  The liberation procedure is basically angioplasty in the veins in the neck.  It is a common procedure to treat other vascular problems.  It is considered relatively safe.

Yet, in many western hospitals the procedure is being disallowed.  Why? you may ask.  Because the evidence points to the procedure not working?  Or maybe there are not enough doctors trained in the procedure?  How about the hospitals are ill-equipped to perform such an operation?

All reasonable answers, but all wrong.  The real reason is because of the lawyers protecting hospitals and doctors from litigation.  And what do lawyers know about medicine?  Nothing.  What do they know about treating sick people? Nothing.  And what do they know about being sick?  Nothing.  And no.  That common cold you thought was the mother of all cases of swine flu doesn't count.

MS is a debilitating, degenerative and eventually fatal disease.  Let me try and paint a picture for you.  You live in a wheel chair, you cannot feed or bathe yourself.  You can't even wipe your own bum, and you are only going to get worse until you die.

But there is hope.  You hear of a procedure that has the potential to halt the progress of your disease, maybe even reverse it.  You even find a qualified doctor prepared to do the procedure for you.  But wait. There is a problem.  Because a lawyer is scared of the hospital being sued he puts a stop to the operation.  You, as the patient are now condemned to a life of disability, and your one hope of wrestling back some form of independence and quality of life has been squashed by a lawyer.

If lawyers are scared of being sued for malfeasance, maybe as patients we should sue them for nonfeasance.  If failure to act when you have the means and capability to do so leads to someone having a substantial decrease in their quality of life, surely they should have a right to seek reparations?

As a patient I think I should have the right to decide my own destiny and choose my own treatment options.  I take the risks and if something goes wrong, I pay the price.  I am of sound mind, and I can make my own decisions.  I don't need someone to do it for me.  Especially someone with no idea.  Lawyers, back off!  Until next time, stay well:)

Today's the day

So this afternoon I am having kidney surgery and I have to say that my preparation has not been perfect. Monday night I stupidly fell out of bed and hurt my wrist. That took me back to the doctor, and luckily nothing was broken, but I have had the use of only one hand for the week.

Other than that, everything has simply been all the little things going wrong. For example, I had to take my son to the doc yesterday, and she was running 45 mins late which sent the rest of my day into a tail spin.

What is annoying is that in the lead up to surgery I like everything to go like clockwork and this time it hasn't. The fact remains that I am still having surgery so I still have to make sure that I am prepared. And right now that is mainly a mental thing. So I simply just planning to pack and relax so I can get my head in the right space.

I will try and keep everyone posted as to how I go on twitter. @shakesandstones. Next time I will blog about my experience and continue my segment on doctors. Until then, stay well:)

Hospitals - done and dusted - Part 2

Making sure that your hospital is capable of taking the proper care of you is very important. And it comes down to two things. First, the quality of the hospital and secondly, their capabilities. I will use two examples here. The Sydney Adventist Hospital and Cotham Private.

The SAH is a big hospital. It caters for multiple disciplines of surgery and had a fully functioning emergency department (which I have never been to). There is not much that isn't done at the SAH. But the question you have to ask yourself is "do they do it well?" I feel the answer is no.

The processes are streamlined to maximise efficiency and one thing I picked up on was that the staff were disgruntled and patient welfare was sacrificed. It is what you get when a hospital is run by bureaucrats and administrators, and I would feel very uncomfortable going back there.

Cotham private is by contrast the exact opposite. It is a much smaller hospital and certainly didn't cater for all different types of surgery. However, what they did do seemed to be more than they were capable of. For small surgeries the highly skilled staff seemed very proficient, but would I want a major surgery there? The answer is no. I something went wrong I would question their ability to deal with it.

You must also make sure you will be comfortable during your stay. Especially if it is a longer stay. Surgery is traumatic and if you let it, it will effect your mental health and leave you with nothing but a miserable memory. Don't get me wrong, surgery is never fun, but if you do it right it will be an inconvenient and mildly uncomfortable event that is a good opportunity to catch up on some reading or DVD watching. Done wrong, it can feel like hell on earth.

So when you are in a hospital, make sure that you are going to be comfortable. A lot of this can be done by what you bring, but also look for the following:-

1. Nurses are kind and responsive.
2. Colour of the ward is warm and inviting.
3. You have your own bathroom.
4. You have a single room if desired.
5. The food is good.
6. You have good entertainment provided.
7. Hospital has a nice setting (good view, easy to get outside, coffee shop, etc)

Next time I will explain where you can get this information. Until then, stay well:)

St Vincent's Private Hospital

Well, here is my last hospital review. St Vincent's Private Hospital. And it is good to end on a good note. SVPH is the last hospital that I have visited and where I had both of my brain surgeries. It is also the best hospital I have visited.

Both times I went to the ward before surgery. Tick. The OR's, pre op and post op were all great. Tick. Wards were nice. Tick. The food was brilliant. Tick. The nurses without question were all great. Tick.

Yes, as far as hospital goes this was great, but still not perfect. The ward was on the fifth floor and outside was the street, so I couldn't just get outside for nice easy walk. At Warringal Private the gardens were small, but to be able to go outside and get some fresh air in a pleasant environment which was always a welcome escape from hospital life.

It wasn't easy to get outside at SVPH let alone in a pleasant environment. However, there was a coffee shop down stairs which did provide some escapism. It does sound like I am picking on the little things a bit, and it would be impossible for SVPH to do anything about this specifically, but they could find other ways for patients to feel more comfortable.

Next time I will review all the hospitals in a recap and attempt to give some pointers to you on what one should look for when selecting a hospital. Until then, Stay well:)

More surgery on the cards.

Yes, you read it right. By years end I will have probably had to have another surgery. Funnily enough you think I would be upset or worried or annoyed. Maybe even angry, but you would be wrong. I have in the past been through all those emotions, but not now. Quite simply I just don't care.

Now don't get me wrong. I do take it seriously, but it doesn't bother me at all. I came to the realisation a long time ago that surgery would be a part of my life for a long time to come and there is no use in letting it get the better of me. There is no fixed time in the future and the surgery I am having I know very well, so I think it is just a case of not worrying about it, getting on with my life and moving forward. I can deal with the surgery when the time comes.

So why do I need surgery? I have another kidney stone. Yesterday I went to see the urologist and as he flipped up the x-ray there it was. Very small, only about 4mm x 2mm, so the urologist decided not to do anything about it now. But it will grow and the trick is to treat it before it gets too big, and it requires more than one surgery. Really it is a game to keep the surgeries to a minimum.

For now, we will just watch this space and when the stone get too big we will operate. All I can say is thank heavens for flexible ureterascopes and holmium lasers. They make the surgery much easier. Next blog I will talk about Epworth Eastern Hospital, which interestingly enough is where I will have this surgery. Until then stay well:)

Cotham Private Hospital

I'm all for space utilisation, but Cotham Private takes it to the next level. They seem to have crammed as much into as little space as possible. They have four operating theatres and only forty five beds.

I have now had three procedures here, and I was really only OK with it because they were minor operations (two lithotripsys and one stent removal). I would not go there for a larger procedure. If I had a larger procedure there I would be seriously worried, and they do them too. I just feel that if something went wrong it would take more than they had to fix it, so you would need an ambulance trip to another hospital.

So, when I got there I was sent to day surgery, which was really just a double room with curtains and four chairs so you could sit down and get changed. When my time came I was wheeled by bed to the OR where their pre-op was merely a spot in the corridor. The OR itself was fine, but when I woke up I felt like Harry Potter waking up in his cupboard. At least that is what post op felt like. The room only had room for three beds and the back wall was shelves full of medical supplies.

When I was done I was whisked back to the ward where I was put in a two person room and told I couldn't leave for two hours. The food was bad the nurses seemed grumpy and the TV's were old and only showed free to air TV.

On the good side for me, it is nice and convenient and they did lithotripsy under a general, but any procedure tougher than that I would be going elsewhere. Next time, it's off to have a look at Epworth Eastern. Until then, stay well:)

Hospitals recap

I have had some criticism that this is a boring topic area. Point taken, it is probably not as interesting as the photos of my brain surgery, but in my defence, the brain surgery is over and I can't see myself back in hospital for a while.

Secondly, I have a point that I am trying to make here, and by explaining where I have been and the experiences I have had in each hospital will make it easier for people to understand what I believe one should look for when deciding which hospital to choose and why.

Anyway, I do see the point, so for now I will only review the hospitals I have had surgery at, which by my calculations means I have five left to review. I will try to make them as entertaining as possible.

Lastly, please feel free to provide feedback online. The feedback I have received has all been via mouth. If you provide feedback online it will be much easier for me to respond to it. I'll be nice, I promise:)

Until next time, stay well:)

Sydney Adventist Hospital - part 2

OK, if you are going to hospital for an operation you expect an operation right? Wrong! Not at the SAH. I got there at 7.00 am to dutifully and patiently await my surgery. At 10.30 am I was processed through day surgery like a sheep going for vaccination. They had no day surgery bays left so I was stuck in a converted broom closet where the TV was yet to be connected.

Here I waited patiently, like a good patient. At 1.00 pm, for lack of a call button, I started to roam the corridors of day surgery to find an answer. Here I was greeted with the questions "Why are you out of bed?" and "Why did you not press your call button?" Well, nobody had come to see me, my surgeons list had finished half an hour ago and I don't have a call button, but sorry for thinking you might actually like to look after your patients.

I got told an answer that my surgeon was running late and just to wait patiently. So I did. Until at 3.00 pm I saw my surgeon who was supposed to be in the OR. I called to him and he asked me what I was still doing here? Apparently my surgery had been cancelled due to a complication upstairs with another patient and my operating room time was pushed.

Yeah right. If my surgeons OR time was pushed why was he still there at three o'clock? And how can a hospital with twelve OR's not find room for a surgeon with a regular morning list. Sorry SAH, I don't buy it. SO my surgery was cancelled and I hadn't eaten for over 18 hours and all they could manage was a cheap sorry, a poorly prepared selection of sandwiches, a juice box and they couldn't even pay for my trip home.

Eventually, I had my op and the hospital luckily didn't kill me. But it was a miserable, de-humanising experience. I didn't get to go to the ward until after my surgery, so I had no idea of where I was, the place was dull and grey, the food was lousy and the nurses were rude and either inexperienced or slouches. A sure 0/10.

Next time a much better experience at North Shore Private. Until then, stay well:)

So, How Has it Helped?

Below is a short list of tasks that a tremor makes very hard to deal with. I have given each task a mark out of ten (one being no improvement from the DBS ten being a perfect improvement) and a short description why.

Brushing Teeth 5/10 - Definitely some improvement, but not perfect.

Showering 1/10 - Sure, it is easier soaping up and washing off etc, but the stimulator can make me dizzy and unsteady on my feet which makes it harder.

Getting Dressed 2/10 - Try putting your pants on when you are unsteady on your feet. It's hard, and so the stimulator makes this harder. However, doing up buttons is so much easier and if scored by itself would score a 9/10.

Writing 8/10 - Being able to rest my hand on the table makes it hard for the big shakes to present themselves and as there are no smaller shakes writing is much easier.

Typing 1/10 - Sorry doctors, but my typing speed has not increased and I still make about the same amount of mistakes.

Cooking 3/10 - Admittedly, the most I have cooked so far is toast, but the problem is that to cook you need to be steady on your feet and I am less so with the stimulator on. However, the steadiness is improving slowly so I am looking forward to getting back in the kitchen and making a mess.

Gaming 5/10 - A hard one to judge. Super Mario Galaxy on Wii is great, but Wii sports is not. Using the Stylus for the DSI is awesome, but the buttons are still hard.

Eating 6/10 - Eating with my fingers is great, but not so much with the knife and fork. I have bade the odd mess, but on the whole it is easier.

Drinking 5/10 - Still generally a two handed affair but much easier and doesn't look funny anymore. I can manage one handed (left side) bet it requires a deal of concentration.

Using the Remote 8/10 - Rarely do I press the wrong button any more, and I think my wife dislikes my new found channel surfing skills

Peeing Standing Up 10/10 - I have not splashed the boots once in the time since i turned on the stimulator. Before the op it was just easier to sit down, but once again, the world is my toilet.

Wiping 10/10 - Yes you know what I mean! No more brown finger for me.

Overall, I say yes it has surely been worth it. The last two point you may find funny (humour was intended), but they are so important. It is the culmination of little things that hurt you the most and these things count a lot. Until next time, stay well:)

Stimulated and Turned On! Part 3

Emotion that I have not shared with any of you so far are worry and a little frustration. They are not positive, but they are there and need to be confronted. When Dr Peppard first turned on the stimulator. At first I was relieved that there was a benefit and that I no longer had to deal with the problem of my tremor. However, there were also side effects, the worst one of which is a lack of co-ordination.

It is hard explain, but some things are easier but others are harder. For example, drinking a glass of water or something like that is easier, but walking is harder. I cannot walk in straight lines easily, and I find it hard to sometimes avoid obstacles such as furniture or toys that the kids have left on the floor. Even a doorway can be miscalculated and hit with my shoulder or something. However, when I turn it off the side effect goes away.

So, from my point of view there are two things I to work out, and both of them will take time. First, with assistance from Dr Peppard I need to find the very best settings for my stimulator and also get used to it. Secondly, I need to learn which setting to chose for my stimulator depending on the task I am doing or the situation I am in. When I start to figure these out I will let you know.Until next time, stay well:)

The Day of Reckoning

Today is it. The machine will at last be turned on and I will find out whether the last three weeks have been worth it or not. It is not if the stimulator works that worries me, when the doctors did the testing in surgery my tremor disappeared, it is the side effects that worry me. Will I have decreased control over my facial muscles? Or will my speech be distorted? Or will I feel dizzy?

The whole idea of the surgery was to increase functionality. Any of the side effects have the potential to decrease functionality. I don't see the point of replacing one disability with another one. I guess at the end of the day at some point it will be a trade off. How much side effect am I willing to put up with in order to relieve the tremor. From talking to other DBS patients it would be unrealistic to expect a total tremor reversal, so it comes back to what I simply wanted from it at the start, and that is to improve my quality of life.

Another thing to keep in mind is it can take up to a year to find the optimum setting for the stimulator. Today is the initial setting, as time goes by I should get used to the stimulator and new stronger settings should be reachable.

Right now I am feeling both excited and nervous. Understandable emotions for anyone in my position. I hope I get a result equal to or better than what I am expecting. I really hope I do. Right now all I can do is wait and see. Stay tuned and I will let you know how it goes. Stay Well:)

Nearly All Over

Well, I am seriously exhausted now. The last three weeks have really taken it out of me and I am glad that it is nearly all over. There is not much to tell about yesterday as the procedure was done under general anaesthetic. Unfortunately for me the anaesthetist I had last time, Nikki Tan was not available, and the guy that did yesterdays op had five goes at putting in the IV. However, if that is the worst that will happen, I'll take it.

On the good side I got rid of the staples in the top of my head, but unfortunately I got a bunch of new ones for the guide wire insertion, and a few stitches where the battery went. Surprisingly there is almost no pain. When I woke up in recovery I had a bunch of morphine which seemed to do the trick and since then I have been able to control it with panadol.

Anyway, aside from being seriously exhausted I am also seriously excited. The hard part is done, and now the fun begins. I am really looking forward to the first couple of weeks with my tremor in check. I don't know exactly what I am going to do, I think I will feel a little bit like a kid in a candy store. I let you know what I do when I've done it. Anyway, I think it is time for my morning nap, so good night everyone and I'll write to you all again later. Stay well:)

Almost a week on.

I just read through my last post, and it does sound like big whinge, and quite frankly, it is. Complaining about wearing some inflatable boots is a whinge, but it is important to note. When one is recovering from surgery your tolerances for just about anything is really low, and many little things can all add up to a much bigger problem. The point that I am making is that it is important to research your procedure as much as possible. The more you know before you have a surgery the easier it is to cope with these things.

So how am I doing now? Aside from getting tired and sleepy at the drop of a hat I am feeling really fine. My head is itching a great deal now so I am looking forward to getting the staples removed. There is also a numb patch on the top of my head where they cut the cranial nerve but the doc says that will repair itself and it does not bother me much anyway. All other things together, when I am awake I have busied myself writing the blog and watching DVD's. I am quite relaxed as well, just waiting for a time for stage 2 of my surgery. Will let you all know when I get a time. Until then, stay well:)

Expect the Unexpected

I must admit, I have been a little ambitious with what I expected to accomplish with my blog. My last post about the day of my surgery I expected to get out on Saturday, the day after. This post about the initial stages of recovery I expected to get out Sunday and it is now Monday, but I shouldn't be surprised, this is brain surgery, and even though I haven't had much pain I have been really tired. I have been sleeping more than 16 hours a so I guess it's not surprising that I have not been posting my blog with free flowing regularity.

The point that I want to make today is about recovery. No matter how much preparation is done for a surgery, things are never quite what you expect. I researched this procedure in greater depth than I did my final year uni exams, but there were still a few surprises. The first as I already mentioned was how tired I've been. In other surgeries I have had the pain has been worse, but after I recovered from the initial anaesthetic I wasn't tired, which normally meant that as I slept all day, and was then awake all night.

Second was the boots I had to wear. I was aware that they would make me wear compression socks as this is general practice for all admitted patients almost anywhere these days. However, I didn't expect the sequential compression boots I was wearing. These boots systematically filled up with air, a bit like a blood pressure cuff, in order to promote circulation and prevent blood clots. To start with they felt quite nice, like a gentle leg massage, but as time went by they began to itch and my legs got hot and sweaty inside them. Had I known about them I might have been able to prepare. Maybe use some powder or cream, or wrap a towel around my legs inside the boots.

A more worrying problem I had was with my speech. I knew that the stimulator could effect speech, but I thought that that only happened when it was turned on. However, in post-op I noticed that my speech was slower and slurred some what. This could have been a side-effect of the drugs and only short term, but I feel that there was more to it than that, and the side effects were still felt over a day later. Everyone tells me that they could not notice it, and I believe that as time has gone by and the swelling has gone down it has got better. But the fact that it was unexpected is rather disconcerting.

Finally, my last unexpected surprise was the size of the cut. When researching the procedure I found pictures of scars that were only an inch long on either side, so you could understand that I was a little distressed when I saw the wound with over 30 staples. I does not really bother me, but I would much have preferred to know before the procedure so I knew what to expect. The doctors had always played down the size of the incisions and coupled with my own research had led to misinform me. This brings me on to a much larger topic, but I will handle that later. The general rule is however, as with many things in life, it will never be quite what you expect.

Well, apologies once again. I said at the start it was Monday, and although I started writing it on Monday it is now Tuesday evening (apology exemption for US readers, who should still get this on Monday) but the days go by quickly when you sleep 16 hours a day. Next time I'll simply give an update on how I am. Until then, stay well:)

Recovery Time

First, thanks to my wife for allowing me to dictate yesterdays post to her. I never would have been able to get it out there without her. Well, yesterday was a very busy day for me, so bare with me, because today's post is probably going to be a long one. I was woken up at 5.45am which didn't really bother me because I couldn't sleep very well anyway. The nurses were keen to get me ready straight away as I was the first patient of the morning. So I had my shower with some special anti-bacterial lotion, and once I had dressed myself in the highly fashionable hospital garb, it was time for that very long trolley ride to the OR.

Once I got to the OR the first people I met were the anaesthetist, Dr Nikki Tan, and her assistant Luca. They were both very friendly and reassuring which was great as I have to admit I was really quite nervous at the time. I have been in the situation waiting for surgery before, but this was different. Having a doctor sticking pins into your brain is a scary thing to think about. It is like they are playing with your very soul, so the friendly assurances were extremely welcoming.

After a short wait the surgeons assistant came in to give me a hair cut and then Nikki started running the sedatives in through my IV and when I woke up my hair was completely gone and Prof Bittar was attaching the stereotactic frame. I must admit that although local anaesthetic had been injected all over the process was quite unsettling. There was a lot of pressure like having my head stuck in a vice, and since I was asleep for the head shave I wasn't quite sure why they didn't keep me asleep for that. The local anaesthetic felt weird as well. Although I couldn't feel anything I also could not frown or make any facial expressions above my eyes. I guess that's what botox would feel like, so remind me never to have it.

With the frame now securely in place I felt like Frankenstein as he was awoken by the doctor for the first time. It was extremely heavy, and uncomfortable on my neck as there was uncomfortable gap between my neck and the pillow. However, before I had too much time to think about it the OR was evacuated as we all headed down to radiology so I could have a CT scan. The trip was long and I certainly got some interesting stares from passers by. The CT scan took very little time and then I was escorted back to the OR by the same entourage of about ten people. Once there the sedatives were ramped back up and I fell back to sleep.

When I woke back up the frame had been wrapped in plastic to isolate the top of my head and they were ready to start testing the first implant. I kept hearing the doctor describing the position of the implant from the target and when he was happy with the position they tested it out. They tested the left side of my body first which meant that the first implant went in the right side of my brain.

For the testing, my neurologist, Dr Richard Peppard, was also there, and instructed the surgeon what level the stimulator was set to. The first time they fired it up I felt a tingle in my fingers then, amazing. My hand stopped shaking. I can't explain what happened, it was simply remarkable. My hand was still and I had no idea why. All I can say is that all I could do was smile and laugh. I felt overjoyed, but as soon as I started to become accustomed to the feeling they turned it off and started to work on the other side.

The right side of my body wasn't quite so simple. When they turned the stimulator on my tremor did stop, but my voice became very slurry and the right side of my face started to droop to the point where I couldn't open my eye. This feeling was really quite scary because I also became very dizzy, but as soon as the machine was switched off the side effects subsided. I started to feel rather agitated at that point. After the great results on the left side I wanted to get the right side done and the frame off me head, but hey played around with different depths and frequencies until they were happy with the results. Prof Bittar then offered me the choice of having stage two of the surgery done there and then or waiting a week or two. I wasn't bothered which way he went, but one of the frame clamps was attached where he would run the power line to the battery, which increased the risk of infection slightly, so I left the decision to him and he decided to wait. After which it was back to sleep and the next time I woke up I was in recovery.

In recovery it felt like the stereotactic frame was still on my head which was quite sore. Other than that I felt fine, so after an hour of constant monitoring it was back to CT for one more scan (this time without the entourage of medical staff) before returning back to the ward.

So, how did I feel on return to the ward. The main emotions I had were both relief and worry. I was relieved that it was all over and I knew that at least on the left side I was going to get a really good result. Worried because my speech was still slurry and I hope that this wasn't going to be a more permanent side effect. Fortunately, over time this has subsided and at least the hardest and most dangerous part is over now. In my next post I will let you all know how I am going recovering. I have also attached a few photos for your amusement. Until next time, stay well:)

Photo of myself wearing the stereotactic frame

The incision

Karma doesn't like me :(

So in the last couple of posts I have been saying how things can be surprisingly easy when you only have one thing to worry about, and I have to say that mentally, I feel as prepared as I possibly could be for my surgery, and this still remains, except for one unexpected stressful situation that reared its ugly head this afternoon. Yes, I had to have a car accident.

Now I might sound like I'm whinging here (and I probably am) but the accident was not my fault, but unless I prove otherwise, I still get the blame. Anyway, the details are irrelevant for this blog, what is important is how I cope with it two days out from surgery. Time is not on my side, and I have to work through it quickly. All insurance details have been taken care of, and seeing as I can't drive for a month from tomorrow my wife will have to take care of the repairs. This means that the only problems left were all in my head.

So how did I feel? At the time I felt suddenly angry, but this dissipated quickly and I was left with annoyance. After I got home and had time to have a vent and a grumble to my wife I just felt stressed and worried. Still these are not good emotions to take into surgery and needed to be dealt with. So I talked it through with my wife. The rational steps to the conversation went something like this:-

1. Nobody was hurt.
2. We all did the right things post accident.
3. Insurance company was notified.
4. There is nothing more for me to do.
5. It is just a car.

And she is right, after that I felt better. Right now I am simply looking forward to dinner with friends. I think I am over my little mishap this afternoon. Until next time, stay well:)

I Feel Great!

I have just finished updating my mood on patients like me and I have been surprised to find that my last five entries have all been 'good'. www.patientslikeme.com is a great website for people with chronic ailments, especially when it comes to mental health. I will review it in more detail in a later blog, but I want to focus on the mood mapping. It allows you to rate your mood on a scale of one to five (one being bad and five being great). It is fairly crude, but a great early warning system for your mental health. Oh, I hear you asking what is a rating of good. Basically, good is four out of five.

Now I have touched on my mood being good in previous posts, but I have to say I was surprised, and I did not realise that the decrease in the number of stresses would be so profound. Don't get me wrong, the stress from the impending surgery is massive! But just having one stress to deal with is so much easier. I really feel that I am learning a big lesson here, and it is a great one to learn for future management of my own mental health. As of yet I haven't figured out how to apply this new found knowledge, but when I do I will be sure to let you know. One thing for certain is that it will be a process.

So, other than the trivial day to day tasks, my main focus is on the surgery. But that is nothing new, I have told you all this already. I have told you where exactly my concerns and anxieties lie, but I haven't told you how this is making me feel. This is probably because I am not sure. Yes, there is a strong level of anxiety and worry, but there are also a bunch of emotions that are thrown in the mix, some of which I didn't even know existed. I would say I am definitely experiencing mixed emotions.

So far, the best I can come up with is that I am at a crossroads of my life. Something is going to happen on Friday, and there could be a number of different outcomes. Each potential outcome has a different emotion associated with it, so my feelings are changing with each new thought. However, I think that half of the ease of the situation is that there is nothing that I can do about it. It will be what it will be, so all I can do is wait, enjoy my family and friends and try and have some fun. I've gotta say, I have really loved the last three days with my family. Until next time, stay well:)

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:)

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:)