Busy day.

I had three medical appointments today, and I have to say I feel like I'm in the twilight zone.  Why? I hear you ask.  Well, I didn't have to wait more than five minutes to see any of them!  The other point to note is that none of them were bad, which is becoming more common as I grow in confidence and get on the front foot with my treatments.

I started out with my tremor doc.  A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of.  I was wrong.  I had an adjustment and although the improvement was only minor, it was still an improvement.  So, I am now thinking how much more can I get out of this.  I guess that only time will tell.

While I was there we talked about stem cell transplantation and other drugs for CIDP.  It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject.  His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.

After that I went and had a chat with my chemist.  I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour.  One problem that I overlooked about the drug was that it is insanely expensive.  About $3500 a treatment, and is not covered by the PBS.  So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.

After that I had to run off to the mercy hospital to have a 'stealth' CT scan.  Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery.  I had to question the relevance.  Seeing as everything is working really well, surely the leads are in a good spot?  Anyway, I had the scan, and I'm sure if something is wrong, they will call me.

Lastly, it was off to the physio for a bit of neck work, which felt great.  All in all I feel it was a good day for me from a medical point of view.  Until next time, stay well:)

And now, the MRI!

OK, OK, OK.... I'll get to the MRI in a minute, but first I just noticed that over 50 people had viewed my profile! Woo Hoo! I can't believe that people are actually reading it, but as I said before, I feel I have a lot to say that people may find informative and interesting and as a reader, I hope you do. Unfortunately, nobody has left any feedback so I don't know for sure. So please, feel free to tell me what you think. Positive or negative, I promise I won't take it down unless it is offensive or completely off topic. If you don't feel like giving feedback, you might want to simply tick one of my new reaction boxes to help give me an idea.

So, on to the MRI (aka. magnetic resonance imaging). Firstly, I was a little grumpy that morning as I had to fast because they wanted to sedate me for the MRI. So if you happened to cross paths with me on the way to the hospital I apologise for any beeping, swearing or rude hand gestures you might have received. Anyway, just before 9.00am I arrived at my location which felt more like the entrance to an apartment block than a hospital. I made my way up to the MRI reception, and then out it came. The form. If you have essential tremor, or just about any other movement disorder for that matter, you will understand my loathing for forms, and there multitude of annoying questions like have you had any surgery in the last six months and what medications are you on? FYI, they want more info than just 'yes' and 'lots'.

After the form, the wait started before I was taken to a change room where I was asked to change into a pair of pyjamas that would send a fashionista into shock, and then for good measure, another wait until finally I was marched into the MRI room which looked almost exactly the same as it would in any respectable medical drama. Then I thought "Am I in Grey's anatomy?" Since the neither the nurse or the technician look like the sort to have sex in a supply room, I guessed not.

Once in the room, they asked me to lie down on the bed. They put some headphones on me as the MRI is quite loud and I could also listen to music, then they fastened my head in place and then put a grill over my face that made me feel like Hannibal Lector. That's when it hit me. I felt my pulse rate rise and my hands clam up, because for the first time I really felt that my surgery was not something I would do in the future, but it was imminent and close.

They put a blanket over me because it was quite cool in the MRI room, and as they slid me in I felt the sedative start to work and I fell asleep for the duration of the scan. After which I got up, got dressed and my wife drove me home. So, have I reflected on those feelings of imminent surgery? Yes, I have. I think it is important to address these issues sooner rather than later, but have I figured them out yet? Not completely. I think the first thing I recognise is that these emotions are perfectly natural for someone in my position. Now I just need to understand and control them so I have a constructive outcome. Until next time, stay well:)

The Final Stretch

One week out and the testing is all but complete. The next time I see the inside of a medical facility will be in a weeks time when I front up for my surgery. But in this blog I will write about my final two obligations I had to fulfil before my surgery.

First, I had to see my neurologist, Dr Richard Peppard one last time. I have to say that this must have been one of the most beneficial doctors appointments I have ever had. When I got there his nurse Mary ran through everything. My long list of questions were answered and for the last fifteen minutes Richard joined us to add just a touch more clarity to the process. At the end they got me to do some tests so I would have a baseline comparison for my tremor. I had to do some fine motor skills, and they observed my tremor on video as well. They also had me do some reading as voice can be effected by the procedure, and if it is, they like to know by how much (as would I).

However, the main benefit came from having my questions answered and the assurances that I didn't even know I was looking for. Two of my main concerns were having the procedure not work and freaking out on the table. Richard shot these two concerns down in a smoking ball of flames whilst being extremely professional and compassionate too. For the procedure not working he basically made me feel like I was the ideal candidate for DBS and it would be extremely rare for it not to work. I have decided not to question the validity of this new belief as research in this area might only stand to worsen my anxiety. Sometimes, ignorance really is bliss. As for the freaking out on the table, he told me that he has never had a problem with any patient before, even Parkinson's patients, where anxiety is commonplace. He also talked up the compassionate nature of the staff and the effective nature of the drugs that they use, and if it really did hit the fan, they could always put me under with the general.

I am lucky that I have a great team working for me on April 30th, and although my anxieties have been somewhat relieved I have decided that it is still probably best to focus on the outcome and not the surgery. Next time I will talk about my MRI experience. Until then, Stay well:)