My story began nearly 28 years ago within six weeks of the birth of my second daughter. I should add that while pregnant I had a car accident where a car ran a stop sign and hit my car on the side. I also had terrible morning sickness and was prescribed morning sickness tablets most of the pregnancy. The doctors have felt for the last few years these tablets for morning sickness could have caused my dystonia.
One morning I woke up with my head over on my left shoulder and spasming, with no way of lifting my head. I was lucky in a way that the first GP I saw knew about cervical dystonia and diagnosed me straight away. He sent me for tests and then to a neurologist who told me there was no cure and to go home and get used to it, but never to let anyone operate on me.
Three years later I was offered a casual job at a TAFE where I met a man who knew someone with CD and asked me if I would like to meet him. This was my first meeting with another sufferer. He was on one of the first trials for Botulinum toxin with a neurologist. I then got a referral to his neurologist who started me on Botulinum toxin and I had a good result. My head lifted up but was still turned to the right and it stayed that way. However, it was so much more bearable until I was rushed to hospital for emergency surgery for another complaint. As a result of the anaesthetic I started to spasm worse than ever. I spoke to the neurologist about this but he didn’t believe an anaesthetic could cause the problem so I then looked for a new neurologist.
I then heard about Professor Colebatch at Prince of Wales Hospital so I saw him and stayed with him for approximately 19 years. He treated me with medication and botulinum toxin but eventually I developed antibodies to the toxin and although he tried different versions of botulinum toxin, nothing worked. He would often do his own research and his research assistant called me to go in for testing. However, I wasn’t feeling well as I hadn’t had treatment for five years and was starting to go downhill. So she called him and he reviewed me. He told me there was no further medical treatment but would I consider Brain Surgery. I was so bad I said yes.
By this time I was still working but finding walking difficult with the constant spasms and it was affecting my inner ear. My balance was not good and trying to cover the symptoms at work was getting harder.
I was then referred to Dr Stephen Tisch at St Vincents who assessed me for DBS surgery and he believed I would be a good patient for this type of surgery. He in turn referred me to Dr Richard Bittar who would fly up from Melbourne to do the surgery. A couple of months later there was a cancellation and I was given a date and after the tests I had surgery.
Three years and three months later I had to have the battery replaced by neurosurgeon, Dr Ben Jonker, and I went on to a self-charging battery. I now have a new programming system that suits me so well but it has taken time. It’s something you have to be patient with while they get the correct settings.
I believe since DBS I have my life back. I can do anything I need to do. I’m still working fulltime, still do respite foster care and am still driving.
My DBS Journey
Hi everyone my name is Robyn and I’m treasurer of the Dystonia Network of Australia. I’ve had CD, Cervical Dystonia or dystonia of the neck, for the last 29 ½ years since my youngest daughter was 6 weeks old. Also I developed Spasmodic Dysphonia, voice dystonia, 3 ½ years ago. When I first developed CD my head was right over on my shoulder and spasming and wouldn’t rise from there.
I did start Botox with Dr Lorenz and went in to a type of remission but after I had emergency surgery a drug I was given brought all the spasms back again but I wasn’t happy with my treatment and when Professor Colebatch started treating patients with Botox I moved to Prince of Wales.
I was being treated with Botox A for approximately 15 years when I developed antibodies and then very quickly developed antibodies to Botox B after only a couple of doses. I had previously tried all types of Dystonia medication. I then went 5 years with no treatment but started to go downhill. The symptoms were getting worse, my head had gone completely to the right and back, Retrocollis, and the spasming was so bad that my balance was affected. I couldn’t look to the left at all and was constantly falling upstairs. In fact when my baby was small we lived in a first floor unit and I had to have her 5 year old sister carry her up the stairs as I was afraid of falling and hurting her.
I was then referred to Dr Stephen Tisch with a view to seeing if I was a suitable candidate for DBS surgery, and I was. On December 21st 2009 Dr Richard Bittar, a neurosurgeon, flew from Melbourne and operated on me (at that time St Vincents didn’t have their own DBS surgeon) and straight away my pain level went from 9/10 to zero. In April 2013 I had the battery replaced and Dr Jonker put in a self charging battery.
DBS is a journey and there are no quick fixes. It takes time to get the settings right and you have to have a good relationship with your neurologist or nurse programmer, giving them good feedback on any setting changes they make. They can’t do this alone and for best results it has to be a team approach. I’ve heard some people say, ‘well it isn’t working I’ve been having programming changes for the last 6 months’ I’ve told them 6 months is way too early to be dismissing this surgery, you need to hang in there and they will get it right.
There are some people who don’t get the relief they might want and I don’t know whether that’s the surgeon, the placement of leads, infection, or follow up care. You have to look back and see how far you really have come. I know now when I’m turned off for Botox for my Dysphonia, I see how quickly those symptoms come back and I realise I’ve come a long way.
And Yes I am one of the lucky ones but I’ve worked hard at this and DBS has allowed me to keep working. I work fulltime and I have two lovely daughters and sons in law and a grandson on the way. I do respite foster care two weekends a month and I look after my own home and watch over my elderly father and still find the time to be Treasurer of this great group. So life for me is great. If something went wrong and it all stopped working, would I consider DBS again? I would for sure – I would never go back to the way I was before DBS.
I want to thank Dr Tisch and St Vincents Sydney for all the support given to me and my daughter who now has Dystonic hand tremors. We couldn’t have got this far without their care.