From the Ashes Comes the Pheonix

Surfing the internet recently I came across this very interesting article on how innovations to health care have come out of war.  Personally I feel that medical innovation is no excuse to have a war, but if you are going to have one, any good that can come of it is a good thing.

It did however get me thinking about what other atrocities may have lead to proper therapeutic medical treatments that may add quality to peoples lives.  So that lead to the try and find the answer to another question I had asked myself in the past.  How did they figure out that DBS could help pacify movement disorders?

I mean it's not like someone simply said "lets stick a needle into someones brain, connect it to a car battery and see what happens?"  No ethics committee or patient in their right mind would agree to that.  So I did some digging.  DBS was clearly a natural progression from other brain procedures like a thalamotomy, which involved destroying a specific part of the brain to arrest a selected movement disorder.

But where did the thalamotomy come from?  Now I have a theory, but I have not got any evidence to back it up, so you are welcome to agree or disagree, call me full of $%#&, whatever.  But I have been thinking about it and I would like to share.  My theory is that the origins of the thalamotomy were born from the lobotomy.

Now I have no evidence to back this up , but if you were a doctor pioneering thalamotomy or DBS would you want your work being linked to lobotomies?  Over all, about 40,000 lobotomies were performed in the USA between 1935 and 1960.  It is a really scary thought, and I believe that what doctors like Walter Freeman did was become so obsessed in their work, they clutched to any positive they could and ignored the negative.

What they should have been doing was dismissing lobotomy and trying to find a better way of doing something to help these people.  I mean, if you think about it a thalamotmy and a lobotomy have some similarities.  They are both used to destroy parts of the brain to improve the patients life.  The main difference is a lobotomy is extremely crude, like trying to cure a headache by shooting someone in the face and as a result, destroys a great deal of brain tissue.  A thalamotomy is much more precise and targeted and every effort is made to preserve good brain tissue.

So if (and I do say if because I have no evidence) DBS was born from lobotomy, do I feel guilty for having it? The answer is no.  Would I feel guilty having an emergency procedure done to me that was born on the battlefield.  Again no.  Many might have had to suffer and die to develop these techniques that are now used to help people, but I don't think that having a procedure would dishonour them.  In fact, the opposite.  Turning our back on what we have learnt would mean that their pain and suffering or death would have been for nothing.

On a personal note I think what was done in regard to lobotomy was abhorrent.  The fact that the practice was allowed to go on for so long was a travesty and a complete failing of the medical system.  It is the most extreme case of egos, arrogance and complacency destroying lives in the name of medicine and healing.  It is also one reason why my number one rule is take charge of your own health care.  I feel if people in the 1940's and 50's knew what was going on other than the spin from their doctor, they never would have agreed to the procedure.

On a side note, I think that the doctors that are practising and pioneering DBS are doing an amazing job.  Personally, it has made a massive difference in my life and I urge them to continue the good work.    Until next time, stay well:)

Dangerous Implants

I learnt something today.  Just because something is wrapped up inside you can't forget about it.  I was watching a current affairs show today ant there was a story on the company Medtronic.  Medtronic are the manufacturers of my deep brain stimulator, but they also produce a whole bunch of stuff to do with medical implants and pace makers etc.  Here is their website:-

Medtronic Australia

The story on the current affairs show, creatively named "A Current Affair" was about faulty pace maker implants for the heart.  Apparently they were misfiring causing pain, discomfort and potentially death and as a result a product recall was issued in each country the product had been sold.  Here is a link to the story:

Heart Device Recall

So what did I learn?  In Australia the Therapeutic Goods Administration (TGA) insist that the company providing the product only need to contact the patients doctor about a recall.  From there it is up to the doctor to contact the patient to arrange fixing, replacing, whatever.

Now what if my doctor is retired, deceased or just plain disorganised?  That message is not going to get to me.  The TGA should make it mandatory for the company to contact the patient.  Now, fortunately for me my model of DBS has no recalls or concerns surrounding it, and second, both my neurologist and neurosurgeon are extremely efficient, and I would be very surprised if important news from Medtronic didn't reach me.

But in keeping with my mantra of 'take charge of your own health care', in future I am not leaving this to chance and I am going to make sure I keep myself up to date on any DBS news.  I also think that the TGA should make it compulsory for the medical manufacturer to inform the end consumer of their good if there are any fault.  After all, if it was your implant wouldn't you like to know?  Until next time, stay well:)

Ps.  If you have an internal cardiac defibrillator implant by Medtronic you should contact your doctor.

Depression Smack Down!

When I last posted to you, I had just felt like I had really made some headway tackling my depression.  I had taken myself to a point where things actually started to feel possible.  I had issues that needed addressing, and now I was in a space where that was possible.  If I had tried to skip straight to this point I would have failed and probably ended up in a worse spot.

Every step I made I did in consultation with my psychologist.  We discussed each step, what I needed to do, how I was going to do it, when I was going to do it by, what my expectations were, and most importantly, what I would do and feel if it didn't go as planned.

The first things I needed to address were my medical issues.  Be proactive not reactive.  I had three major issues that I needed to counter. Kidney stones, CIDP and tremor.  In terms of my battle with cystinuria and kidney stones I had been losing the battle for a long time.  Throughout my 20's I hadn't really been very good at looking for a medical solution.  If I wasn't symptomatic, I would pretend I didn't have a problem and carry on living my life normally.  If I was symptomatic I would get my stones dealt with surgically.

Truth be know, in my late teens and early 20's this actually worked quite well.  When I was not symptomatic I could go about my business as a regular uni student, and when I was symptomatic I had the time to go and have surgery and my young fit and healthy body would recover well and quickly.

However, when I got older, time was more precious and the surgery took more of a toll on me until I finally had my mega hospital stay in 2006.  Something had to change.  I organised to see a different nephrologist, who I liked and respected a whole lot more, and instructions I was much more likely to follow.  I also went and got hypnotised to help me drink more water.

With a metabolic disorder like cystinuria, you are never going to get rid of the stones completely, but I went 3 years after then without one stone!  Something I hadn't done since my first stone in 1994.  Next, I set my sights on CIDP.

I was extremely focused on getting better, but I had tried nearly every known treatment there was already, so where to from here?  My answer was to hit the disease with multiple treatments all at the same time.  I had in the past been treated by IVIG, plasmapherisis and mycophenalate, but never all at the same time.  So that is where we headed.  

Unfortunately, that didn't work, and in the past it would have wrecked me, but with my counselling I had prepared myself for that eventuality.  I was disappointed, but I could carry on.  But there is hope, as I have been researching the possibility of an autologous stem cell transplant.  But that is another story for another time.

Lastly, I had to combat my tremor, and since I was hitting it hard, it was time for the deep brain stimulation surgery.  There was an element of fear, but I realised that it was something I had to do.  I was done with my diseases dictating my life, I was in charge and I was going to have the surgery.  I have blogged about this surgery extensively, but if you haven't read it before, it went great.  In contrast to the CIDP, where I didn't let the bad news set me back, I certainly let the good news from this surgery carry me forward.  For the first time in a long time I had experienced the joy that came with success and triumph.  Positive emotions rock!


If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Next time, I will talk about all the other issue that I had to confront and face as part of my depression recovery.  Until then, stay well:)

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:)