You can take Baclofen by mouth in a low dose. Some patients do not respond well to oral medication and can develop side effects.
It is often preferable to implant a system that delivers drugs directly into the nervous system. Delivering the medication into the spinal cord can improve results on smaller doses than with oral medications. This can also minimise some of the potential side effects.
How Intrathecal Baclofen Therapy (ITB) works
A pump delivers Baclofen into the spinal fluid. This is implanted under the skin of the abdomen and connected to a thin flexible catheter. The catheter is tunnelled beneath the skin into the intrathecal space in the spinal cord, where it delivers a precisely controlled dose of the medication.
The pump can be programmed to suit the individual. It can provide a higher dose of medication at different times of day, if required. The pump is about the size of an ice hockey puck, but can sit in the abdominal cavity.
Who can have ITB
Children as young as 5 have received ITB, but it does depend on the size of the cavity in the abdomen in which the pump sits.
Benefits of ITB
ITB can give more independence in feeding and dressing. It can also make sitting and transferring more comfortable.
For people with CP, some of the specific benefits are:
improvements in self care and social function
improved motor control and function
reduced need or extent of orthopaedic and surgical intervention
reduced muscle tone with ITB may slow or prevent hip problems or dislocation
long-term control of spasticity
ITB side effects and risks
Side effects of Baclofen can include:
hypotonia (loose muscle tone)
headaches and dizziness
Like all surgery, ITB carries risks such as infection, bruising, bleeding, spinal fluid leakage, headache and discomfort. The medical team will discuss these with you before the operation.
Some potential risks include those associated with the pump. For example, the tube may move, kink or break, or part of the pump may fail to work.
Suitability of ITB
ITB is not suitable for everyone who has cerebral palsy or a neurological condition. For example, it does not help people with:
low muscle tone, often described as floppy muscles
chorea (uncontrollable, small jerky movements of toes and fingers)
athetosis (involuntary movements of face, arms and trunk)
It is recommended for severe generalised spasticity.
There is a clear screening process. The final stage, before the pump is inserted, is to give patients a test dose of Baclofen direct into the spine via a lumbar puncture. This lasts 4 hours and ensures that this method of delivering the drug is suitable. This test dose will help the medical team decide whether you or your child will benefit.
How to make the best of ITB
The key to the success of ITB is working with the medical team. It's important to attend all outpatient visits for refills and follow-up assessment. Follow-up visits vary from weeks to months depending upon the dose of medication.
Treatment can involve intensive physio and occupational therapy in the first few weeks after the operation. Therapy may continue for several months.
The pump is made from titanium and the catheter from silicone. These materials are unlikely to cause an adverse or allergic reaction.
The battery within the pump can last several years. Your medical team will monitor the battery life and can schedule a pump replacement before the existing battery expires. The pump also has an alarm which will prompt you to see the medical team before the battery runs out.
Availability and funding options
Funding for ITB can be inconsistent. Almost all medical and surgical treatments are funded by your Primary Care Trust (PCT). Factors in the decision include:
the published evidence of the therapy
and the availability of funds
Once you or your child have been assessed as suitable for ITB Therapy, the medical team contacts your PCT for an agreement to fund. This process may take months on a waiting list until agreement is made. Occasionally funding is refused. If so, there is the right to appeal.