Moving On

Well, I am now through the worst of the brain surgery and recovery. Thanks to everyone for reading and your support. It has made it so much easier to cope with knowing that so many people are behind me and thinking of me. I will definitely keep you all informed of how I am progressing but for now I want to get back to my primary reason for starting this blog, and that is using my experiences as a patient to help others cope with being a patient.

Topics I will discuss are how best to cope with the medical situations that I have been confronted with, how to integrate illness into the rest of your life, doctors and other health care professionals, natural medicine, pharmaceuticals and others. I also want to spend some time talking about depression as this is something else I have to deal with and in many ways has been more debilitating than my other problems.

Lastly, I would ask you all to ask questions and stimulate debate. I have found that this is a great way to provide answers to topics that might otherwise have floated under the radar. I hope you look forward to my next post. 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:)

Recap

I have now had my stimulator turned on for ten days, and although the hardest part is behind me there is still a long way to go. So far I have had one adjustment setting for my stimulator but there could be many more before I get the right one. This is actually good news for me as I hope to receive more benefit from the stimulator than what I am currently getting.

The big question that I have been asking myself this last couple of days is has it all been worth it. If you look at the video I posted (If you haven't, see 'First time my stimulator is switched on') you see a marked difference. But has it really improved my functionality or is the video nothing more than a really cool party trick?

In my next post I will identify a few areas where tremor is a big problem, and then critique how much help it has given me, but for now I think it is safe to say that it has been worth it and there has been benefit.

However, there is one thing I have found quite confusing. Before the surgery I thought back along the progression of my disease from the first symptoms I had as a teenager through to when it became problematic in my mid 20's and my diagnosis, to present. I expected the stimulator settings to simply show a reverse progression of the disease, stopping at a point somewhere along this timeline, but this has not been the case.

Instead what I have noticed is that the frequency of the tremor has diminished the wave length has increased. So instead of ten normal shakes I have one big shake. That is not as bad as it sounds. If I slow things down I can avoid the shake but sometimes that can be hard when you're in a hurry. Anyway, next time I'll critique it in detail, until then, stay well:)

History In Pictures

The first process - The assistant neurologist shaves my Head

My best ever Michael Klim impersonation

In full head gear

Post Op 1

Post Op 2

Back in the ward with my big pillow

The head wound two days on

The wire lumps just prior to stage 2

In post op after stage 2

The stage 2 wound. They wouldn't shave my whole head, even though I asked them to.

The big wound without staples

Chest wound I got in the war

Close up

First Setting Adjustment

So last week I went back to Dr Peppards for my first stimulator adjustment. As I am not yet allowed to drive my dutiful wife took me in, which was nice. Normally I attend these things by myself, but I must admit it was nice to have the company. Luckily we got a park right outside and we arrived just in time which mattered not, because the Dr was running late as usual. Like a bride on her wedding day, I think doctors run late on purpose just to let you know who's the boss.

After about fifteen minutes we got in to see Dr Peppards nurse Mary, and she immediately started playing with the settings to try and get a better result. The first thing she did was whack the setting up to0 four and I instantly started tingling in my arms and teeth, then I just felt really dizzy. I also had a much more unpleasant side effect, I started to sweat a lot. Luckily this passed when we stopped playing with the stimulator.

Another thing Mary did was to try another lead. Down each electrode there are four points which can be used to stimulate the brain. They are about four millimetres apart, and they try and put the last lead right on what they believe to be the best spot. When she tried the second lead up I got an irresistible urge to turn my head up and to the left. It was like some one was turning my head for me. As soon as Mary turned off the stimulator the sensation stopped. My wife thought I was going to have a fit.

After about fifteen more minutes Dr Peppard came in and we settled on the lowest lead with a setting of 1.6 on the left and 2.5 on the right. Don't ask me what the measurements are in, I don't know. Anyway, in another two weeks I'll go back to see him again for more setting changes. 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:)

Stimulated and Turned On! Part 2

I have to say that I stayed in that peaceful zone for at least an hour and would have stayed there longer accept for a visit from my father in law. I figured that this was the catalyst I needed to get up and take my neural stimulator out for a spin, so after donning my dressing gown and slippers I armed myself with a $10 note and we headed off down stairs to the hospital coffee shop. On the way down it was the little things that impressed me that one does not even realise. First I put the $10 note in my wallet without even thinking about it. Before I would have had to be careful to make sure that I got the note in my wallet, and that I didn't empty the other contents of my wallet in the process. Secondly, I used the end of my index finger to push the G button inside the lift. Normally I would use a knuckle as a knuckle would shake less than a finger tip.

Once down stairs I hit my first glitch. As a side effect of the stimulator I was feeling quite dizzy, and I was having trouble walking in a straight line, so I decided not to buy the coffees as originally planned and left that in the capable hands of my father in law. Things got back on track after then though. My mocha arrived in a paper take-away cup, and for the first time in years I managed to prize off the lid, open a sugar sachet, pour it it, stir my beverage, and all without spilling a drop. Yet I still did not feel excited. Just relief, tranquility and contentment. For the first time in years I managed to go out for coffee and enjoy the company and experience without having to worry about how to pick up a hot drink without spilling it or looking stupid. Yes, ladies and gentlemen Friday the 14th of May was a landmark day in the life of Andrew Price.

So that was my first post operative coffee experience. I never thought an ordinary coffee expedition could be so interesting! At least I hope you found it that way and have maybe learned some valuable insights as to what myself and fellow tremor sufferers had/have to go through. Next blog I will focus on the negatives of the DBS. Don't worry, they are more than outweighed by the benefits, but they do exist. Until then, stay well:)

Stimulated and Turned On!

I hope you all enjoyed the video in my last blog. I'm sorry I didn't get it up sooner, but I had trouble getting blogger to let me upload it. Anyway it's up now and I hope you enjoy it. I think that the last thirty seconds are the best.

So it has now been three days since my stimulator was turned on, and I have really been on a bit of an emotional roller coaster in that time. When my neurologist, Dr Richard Peppard first turned on the stimulator I felt like laughing. I had almost talked myself into thinking that it was never going to happen. The good doctor was supposed to turn up at 10.00am, then this turned to 11.00am and after that time came and went he finally turned up at 1.30pm. So at this time I was thinking we would get this show on the road straight away, but no, there was ten minutes of testing. But finally, with a sudden surprise he turned the stimulator on my right side only and I stopped shaking.

So why did I feel like laughing? I don't really know. In a way it made the last ten years seem like one sick practical joke at my expense, and now that it just ended all I could do was laugh along. In another way it felt like a great magic trick that was so amazing all you could do was laugh.

After the laughing passed and I had a second to really take stock of what was going on I was surprised not to feel overjoyed or elated. No, there was no jumping over the moon here. There was simply a feeling of relief or calm. It was the lifting of a burden or like the feeling you get when you finally squash that mosquito that has been buzzing in your ear for 20 minutes, just a thousand times worse, and now I had found peace.

Dr Peppard then set up the left hand side, the results you can see for yourself in the last post I made. After the doctor left I thought I'd be ringing everyone I knew to let them know about the successful surgery, but no. I simply sat there enjoying the stillness sipping a glass of water, a simple task that only minutes before had seemed like a much more difficult ordeal. Next post I'll talk about how I have felt coping with the side effect and what my expectations are for it for the future. Until then, stay well:)

First time my stimulator is switched on

Hey all, this is the first time the stimulator was turned on on my left hand side. I think it is best displayed how good it is when it is switched off. Enjoy and stay well:)

It Works!!!!

I actually picked up a glass of water with one hand and took a sip. I haven't done that in years. However, there are side effects. First, my voice is a little slurry, second, I'm a little dizzy, and third, one I did not expect, I have had the sweats. But the neurologist says these will pass with time. Well, this was just a short post. I am now off to play with my new found ability. Next time I post I will try to get some video and photos up. Until then, 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:)

Stage 2

Tomorrow I am having stage two of my surgery. I can't remember if I explained this to you all yet, but if I didn't here it is. So far I have two electrodes about the thickness of a toothpick reaching straight into the centre of my brain, which are fastened solid to the outside of my skull so they don't move. In stage 2, which is done under general anaesthetic, they attach a wire to the end of these electrodes, and then run it under my skin down my head, behind my ear, through my neck and into my shoulder. Here another incision is made and a battery is inserted. The wires are connected so a constant charge can be sent to my brain.

Most of the anxieties I had before stage 1 I no longer have. I know from the in surgery testing that the stimulator will work on some level and as for having a foreign body in my head, I haven't noticed it even a little bit. However, I have noticed the staples in my head, which I can see, feel and itch like crazy.

So how am I feeling about stage 2? There are mixed feelings really. First, they will be taking the staples out which I can't wait for. I don't like the way they look or feel so once they are finally gone, the better. Second, it is one stage closer to finally getting the thing turned on. For stage 1, I didn't let myself get excited incase it didn't work. But this time I am, and the sooner I have the operation the sooner I can turn on the stimulator.

However, there is still an hour and a half of surgery to go and I am not looking forward to this. A general anaesthetic for that long normally makes you feel fairly ordinary so I am expecting feelings of nausea and discomfort. Also there are the nasty surprises that you can get which you don't want. I explained some of these I had after stage 1. I will be quizzing the doctor quite heavily tomorrow morning before the procedure to eliminate as many of these as possible. Next time I blog will be after the surgery, and I will tell you how it went and how I feel. Until then, stay well:)

Oh the Humiliation!

It was Saturday morning, Grandpa had taken my son to football training, and my wife was getting ready to take my daughter to gymnastics and then on to a birthday party. Being a dutiful husband and having just woken up from my mid morning post brain surgery recovery sleep I thought I should help her get ready. So I made sure that my daughter was ready to go, had put her shoes on and got in the car, which she did. By this time my wife had packed her basket and was ready to go. She sat in the drivers seat and wound down the window and asked me if I could do my daughters seat belt up. This is a task I had performed a hundred times before, but this time something happened.

Just after I had clicked my daughter in place, my complacency got the better of me and as I stood up I cracked my head on the roof of the car. I got myself right on the staples and yes, it hurt like hell. I eventually managed to compose myself and after refraining from a barrage of four letter words (because of the presence of my four year old daughter) I looked up at the two girls in my life.

I expected panicked or shocked looks, at least a modicum of concern on their faces. But no. Neither one of them had moved an inch, they were both sitting there in their car seats laughing. Women can be so mean. Oh the humiliation. After what seemed like an eternity my wife eventually asked if I was OK. She already knew the answer though. I was fine, the bump was just extremely painful.

The point I want to make though is that even when you are down (because of an illness or surgery or whatever) it is important not to lose your sense of humour and not take yourself too seriously. I had two choices. I could go back inside the house and sulk or I could join in the joke and shrug it off with a laugh. I decided to pick my wounded pride up off the floor and join in the laugh. Surgery and illness can add a great burden to your life but it doesn't have to change the person that you are. You didn't have a choice in becoming sick, but the choices you can make effect the sort of person that you are. Choose wisely. Until next time, 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