Onwards and Upwards - Part 3

My final two doctors visits were to the neuro surgeon and the neurologist. The surgeons visit was a fairly routine post op visit. He just wanted to see the stimulator in action and check there were no complications, which luckily, there weren't. I also got the green light to exercise, swim, drive and fly! I have my freedom back which one does not respect until it is taken away. I see him again in twelve months.

The other visit, which was to the neurologist was far more entertaining. Finally, I think I have broken the back of my programming conundrum! This has been a great step forward to me as the last six weeks have been rather frustrating and my impatience was growing. Now, not only do I have a the opportunity to vary my setting a little around where the doctor feels I have the best benefit, I have two completely different settings.

They are labelled A and B. A, gives me the maximum tremor control I can hope for, but along with that comes the lack of co-ordination, slowness and unsteadiness that I have had great issues with. So when I am sitting down, eating, drinking or writing etc, it is the setting of choice.

On setting B I have only limited tremor control, but the co-ordination problems are almost non-existent so I can pretty much do everything that I could before with just a little less tremor. This is great for when I'm up and about like cooking in the kitchen, driving or at the shops.

After this setting adjustment I finally have felt like the whole process of the surgery has definitely been worth it. I feel as though I have a better quality of life, and although there will be other setting adjustments to come, the back has been broken, so look out world here I come!

Next time it will be back to the hospital reviews. Until then, 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:)

A Question via Facebook

I got a question via facebook today, and it is a very good one. The question was what is the operation actually for? For me, I am caught up right in the middle of it all, so I take some things as common knowledge and what seems quite obvious to me can be quite confusing for others. Please, if anything perplexes you, feel free to ask.

Now to answer the question. I have a couple of neurological conditions but the one that they are treating with the deep brain stimulation is Essential Tremor (ET). ET means that you have uncontrollable shakes when you go to use your fine motor skills. It is classified as a degenerative movement disorder along with other ailments like Parkinson's and Tourette's syndrome and is actually the most common in the category. For me it is a problem I have had since I was a teenager, but the tremor was very mild back then and it never bothered any of my functionality. In fact the worst side effect I had back then was other kids picking up on it and having a joke at my expense.

For about ten years it stayed that way until in 2001, about a year after I was diagnosed with Peripheral Neuropathy (CIDP) it started getting worse and tasks like writing or drinking with one hand became harder and started to bother me. I was already seeing a neurologist at the time, so I asked him about it. He did some tests and wrote me a script for inderal (A beta-blocker normally used to control blood pressure.) That did the trick quite nicely for a while, but as time went on, the drug became less effective and so doses were increased and new drugs were introduced which bought new side effects with them.

It was five years ago when the surgery was first proposed to me, and my immediate reaction was "are you kidding?" Clearly, I was not ready at the time for the surgery, but time went by and about three years ago, I all but lost the ability to write, and drinking became a strictly two handed affair. However, I still was not ready for the surgery until about a year ago, so I organised to see the neurologist who specialised in tremor to revisit the idea of the surgery. That leads us to where we are now.

If you thinking I am mad having the surgery read my post entitled "My Brain Needs Stimulating" dated 23/3/10. Well, I hope this answers the question. Until next time, stay well:)

The Itchy and Scratchy Show

Well, it's certainly itchy, but I am not allowed to scratch my wound. To start with I still have a bandage on it, and secondly scratching it would increase the risk of infection, and seeing as though I now have two electrodes protruding deep into the centre of my brain, infections could be highly risky. This risk will not subside until the wound has completely healed over, but the doctors are very happy with the way it's healing at the moment. The most I can do to combat the itching at the moment is put pressure on the itchy spot with my hand which wouldn't feel as nice as a good scratch, but will have to do for now. The only other option is to get my wife to change the bandage, and when the antiseptic is applied the stinging is a welcome break from the itching.

They tell me that the itching is a sign that the wound is healing and will subside when the staples are removed which brings me onto a better piece of news. I have a date for my stage two procedure which will happen on Wednesday 12th May. I am actually genuinely looking forward to this as it will give me a sense of completion and also mean that I can finally have my staples out.

For those of you that are confused about stages one and two, I will explain them to you. Stage one is the initial implantation of the electrodes, including their positioning and testing. Read my post entitled 'Recovery Time" for more information. Stage two requires feeding the power wire down under the skin from my head down behind my ear, through my neck where it finishes just below my clavicle. Here the battery is inserted and connected with the wires. For more information on the device visit:

http://www.medtronic.com.au/your-health/essential-tremor/therapy/what-is-it/index.htm

So, aside from the itching I have been recovering very well. I have still been sleeping a lot, but not as much as at the beginning of the week. I am quite up beat, and hopefully by this stage next week I should be able to have the stimulator on twenty four seven. I would almost say I'm excited about the future now. With the hardest part of the procedure behind me it is hard not to be positive. Until next time, 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

Last Post

Well, it's midnight and I'm in hospital awaiting my early morning start. I can't sleep so the nurse has given me a mild sedative and hopefully I can finish this before it kicks in. I am officially nil by mouth, but the fantastic steak dinner I had last night will see me through.

I have tried to keep my mind off things today, keeping myself busy. I did the school drop off, then went and watched my wife play netball. After which we did a little grocery shopping, then watched a movie. FYI, 2012 is not worth the 2.5 hours it takes to watch. By that stage is was time to get the kids then on to the hospital. It was great to have the whole family with me for the trip, and I think it was good for them to come and see me at the hospital so they can familiarise themselves with it. I sensed they felt much more comfortable since, as the fear of the unknown is a powerful factor in a child's emotions.

So I spent the evening at the hospital which I don't quite understand. They haven't done anything that couldn't wait until morning, and I would much prefer to be at home, but hey, here we are. I guess as it is a long procedure and an early start, the doctor likes to have all his ducks lined up in a neat little row, and waiting for a patient to turn up is not ideal.

Anyway, the sedative has started to kick in, so time for me to go to bed. Next time I blog it will be done and I will be able to let you know how successful it was. Until then, 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:)