A personal account
In the Spring edition of the website, there was an article http://www.hspersunite.org.au/effectiveness-of-baclofen-for-hsp/ on the pros and cons of the baclofen pump for treating spasticity. Now, Ian Broinowski from Tasmania shares his experience of the baclofen pump.
“Ian, work out what you want to do, and do it”. These were the words from my Occupational Therapist many years ago which has been a part of my psyche ever since and that is how I see the Baclofen pump. I am not advocating it nor detracting from it. This is purely about me and my experiences with it.
So the way it works is this: I have a pump inside the front of my body with a tiny tube going around to my spine. The Baclofen travels through the tube and directly into the exact spot where my nerves require it the most. I go to a wonderful doctor every six months who fills the pump using a needle through my skin and into the pump. We then discuss and decide together whether to make adjustments to the dose and then a neurophysiologist holds a small device over the pump and makes the changes, which are very small. Prior to this I took one tablet a day and now use one ten thousandths’ of the amount. It takes 48 hours to move through the tube so I do not notice any changes until the next day.
The decision we need to make each time is a trade-off. The drug is a muscle relaxant so the more you have the easier it is to walk but the weaker and more wobbly you become. However the result is dramatic for me. Just to give you an idea, before this it would take me about 29 minutes to walk a kilometre on the treadmill. Afterwards, my PB (personal best) was 19 minutes 42 seconds: a 33% improvement. Of course the underlying condition continues to progress and after a while I need to increase it. I doubt if I will ever do that time again, but even recently when it was adjusted, my timing improved by three minutes.
It has improved my life and mobility, and of course I am still very slow, but my legs keep going. We have travelled overseas on several occasions without any airport problems: I even climbed the Acropolis!
The challenges are really to decide if you want to have this inside your body. It’s quite big, maybe 5cm by 3cm deep, but you can see that on the web, and yes it does show, which does little for one’s vanity.
Be prepared for the most excruciating headache you could imagine for a few days after the operation to install the pump. Once spinal fluid is lost, it needs lots of coffee, coke and rest to repair itself – just lie on the floor, pat the dog and put your life on hold. For me it was pretty bad, I had six and a half weeks and I was nearly about to give up when suddenly it stopped – the absence of pain is truly wonderful.
Finally my suggestion is don’t look at Youtube clips or other comments on the Net, especially discussion forums, unless they are on a credible HSP site, they will confuse you more and generally talk about the negatives.
I hope this will be useful.
Hi Ian. Your experience with the ITP is similar to mine and improved my quality of living considerably. I’ve had my implant for nearly 18 months now and have had no ill effects at all, apart from the initial spinal fluid leak headaches.
My mobility has improved, the level of chronic pain has decreased and my overall functional performance is much better after ditching the oral Baclofen and relying on the ITP.
You are right about ignoring the internet for reviews or comments on ITPs as most do appear to be negative and this made me delay the procedure for a while. Since, however, I have improved noticeably and like you, am happy with the results.
I’ve been taking oral Baclofen for a couple of months now to treat my HSP – I’m on a very small dosage (10mg x 3 times a day). I have actually been prescribed 20mg, 3 times a day, but due to where I live (South Africa), HSP is not seen as a common illness, therefor Medical Aids refuse to cover it on a chronic basis. So funding the oral Baclofen is an expensive issue, therefore I am only taking the 10mg.
My neurologist has suggested we consider a pump, I am especially terrified that I will wake up and something would have gone wrong with my spine during surgery and I’ll be worse off. I am also slightly concerned about the invasion of another object being inside my body and being visible – being 27 years old with HSP, fitting in is hard enough.
Looking for some guidance from someone with experience on all of this… What do I do?
Editor: The challenge with baclofen where HSP is concerned is that, in HSP, weakness and spasticity co-exist, normally in opposing pairs of muscles e.g. weak thigh muscles and tight hamstrings. Baclofen “weakens” all muscles including the weaker ones not experiencing spasticity, which is why people with HSP need to be assessed for their suitability for baclofen in general and a baclofen pump in particular. There is the full spectrum of individual experience of people with HSP using baclofen pumps, ranging from “best thing ever” to “worst thing ever”.