Baclofen Pump

I have severe secondary progressive MS and am not at all relaxed. My specialist doctor had tried everything, oral Baclofen tablets (a muscle relaxant), exercises/physiotherapy and botulinum toxin injections (botox to you and me). I was still ever so stiff, so he recommended that I try a Baclofen pump.

The drug Baclofen works on the nervous system. By taking it orally I had to take relatively large doses to have any effect. The problem with this is there are unpleasant side effects - the main one being sleepiness, but also it effected my voice and memory. Increasing the dosage to relieve my spasms just made me more and more tired. I was on the maximum permitted dose, so pretty knocked out all the time. A baclofen pump, on the other hand, delivers the drug directly to the spinal fluid. Therefore I would only need minute doses by comparison - microgrammes instead of milligramms, so the drug is far more effective and the tiny dose means I would suffer no side effects

The pump is fitted under anaesthetic in hospital. It is a simple procedure and is a really little thing about the size of a tin of sardines. It fits just under the skin to the right of the belly button and a small tube runs from it, round under the skin to the back. Here it goes up inside the backbone to deliver the Baclofen directly to the appropriate nerves. (See picture and description at foot of page). This means that only the parts you want relaxed are affected, not other bits like voice and memory. Everything is very small and is concealed under the skin so one can wear ordinary everyday clothes. One can live a normal life and nothing shows.  

The Procedure
I agreed to have it done - in for a penny; in for a pound!

First, a test dose is given to check that it was going to work on me. I had this in December 2011 and since this was a 'procedure', not an 'operation', it was done on the ward rather than in a theatre. It  involved an overnight stay in hospital, a local anaesthetic and a tube inserted  into my backbone.

When I was tested before the dose I was as stiff as a board. My specialist is a big strong man and he found it very difficult to bend my arm and leg joints - this is quite normal for me. Once the test dose was given he saw thet I was as floppy as anything - I was incredibly relaxed and very comfortable. My specialist said he had never seen such a good result and I couldn't stop smiling!

Following the success of the test dose I was admitted on Friday 27th January 2012 to have the pump fitted. I had the operation that day and was discharged the next day, a new woman with a new pump to get used to!

All smiles with my surgeon the day after my operation

My specialist halved my oral medication immediately and over the next few weeks weaned me off completely. Oh my unbelievable joy when I took my last Baclofen tablet. Prior to the pump I was on a whacking great dose!

The tablets had bad side effects, the main one being tiredness. Before the pump was fitted, I was sleeping up to two and a half hours every afternoon. Shortly after the pump this fell to one hour and I now only need half an hour just resting. Sometimes I don't even drop off at all if I'm going out or choose not to take 'time out'.

Also soon after my voice got stronger and more comfortable than it was. (I'm sure the family still don't know what to make of it when I tell them not to interrupt  They were so used to finishing sentences for me when my voice was very weak.)

Refilling
I now have regular out-patient check ups at the hospital where the pump is refilled and the dose can be fine-tuned by turning the amount of Baclofen delivered up or down. The adjustment is totally non-intrusive as it is adjusted magnetically by the specialist.

My MS specialist (my hero!) refills the pump every few months

The pump is refilled by syringe.
(Click picture to enlarge)

Refilling the pump is done by a simple, pain free injection. First the remaining dose is withdrawn then it is refilled with fresh Baclofen. This ensures that my specialist knows exactly what dose is 'on board', though the pump itself actually monitors its contents and delivery rate and transmits this information electronically to his magic machine which he uses for adjusting the dose - how clever.

All this is wonderful and it was funded by my PCT. My Specialist had tried everything else (as mentioned above). He had tried it all and I was still ever so stiff, so he talked to me about having a pump. It was the first time I had heard of it.When I talked to my carers about pumps I discovered that the husband of one of my them, who is paralysed, has one. Apparently it works wonders for his relaxation. Anyway, I had one and I think it's great. I would recommend it to anyone with stiffness caused by MS.

One Year On
It's now over one year since I had the pump fitted and I still think it's great. Considering it was such a simple procedure I just with I'd known about it and had it done earlier.


Sarah

Further information
For more details about fitting an intrathecal Baclofen pump see this excellent factseet published by The Royal Children's Hospital, Melbourne. You can see how it works by seeing their diagram below.

My thanks to The Royal Children's Hospital, Melbourne for kindly allowing me to use this picture
Click here to see their website showing further details