This story recounts the experience of one individual who has a TDD pump. Medtronic invited him to share his story candidly. Please bear in mind that the experience is specific to this particular person. Not everyone who receives the treatment will receive the same results as the patient in this story. Talk with your doctor to determine if TDD Therapy with drug injection is right for you.
Life with cerebral palsy
Diagnosed with cerebral palsy and spastic quadriplegia as an infant, Kyle has experienced the effects of spasticity his entire life.
He began taking oral medications for spasticity three times a day when he was 11 months old. Early on, his parents knew the medications would be a short-term solution. Kyle’s medications would have a positive effect shortly after they were taken, but would wear off, leaving him in severe pain and discomfort. Kyle's parents worried about the long-term effects of a lifetime of high daily doses of oral medication.
As he grew, lights and sounds regularly triggered Kyle's severe spasticity and caused him to get upset, sweat, and forcefully push against his wheelchair.
Getting a TDD pump
Kyle's family worked with a team of professionals to find the right treatment. When he was 12 years old, they decided to try TDD Therapy.
Kyle had a successful screening test, and went on to have the pump and catheter placed.
Until he had the pump placed in 2009, Kyle had been taking oral drug. After the surgery, his oral dosage was reduced and his intrathecal dosage was increased in order to get him off the oral drug. During this process, Kyle experienced withdrawal from his oral medication. His health care team increased the intrathecal dosage to correct the problem.
Kyle did not experience any other complications or side effects from treatment with a TDD pump. However, some people do experience surgical complications, side effects of the drug, or both. There are risks associated with treatment with a TDD pump. Some of these risks include meningitis, spinal fluid leak, infection, paralysis, headache, swelling, bleeding, and bruising. Drug-related side effects may include loose muscles, drowsiness, nausea/vomiting, headache, and dizziness. Safety and effectiveness of TDD pump has not been demonstrated for children younger than 4.
To manage the spasticity in his arms, Kyle continues to take oral medications for his spasticity, but at about half the dose he was taking before receiving the pump. His medical professionals and family hope to eventually taper him off of all oral spasticity medications.
After starting TDD Therapy, Kyle didn't have to fight spasticity in his muscles in order to comfortably sit in a chair for long periods, and his mother said he had more control over his legs. Eight months after receiving the pump, he went skiing for the first time. An adapted bi-ski with a small chair provided Kyle with one of the most memorable experiences of his life... so far.
Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.
Patient important safety information for TDD therapy with drug injection
When receiving TDD Therapy with drug injection make sure you follow your clinician’s instructions closely. A sudden stop in therapy can result in serious medication withdrawal symptoms, such as high fever, changed mental status, muscle stiffness, and in rare cases, may result in the loss of function of many vital organs and death.
It is critical that your clinician be called right away if you experience any of these symptoms. Make sure you keep your scheduled refill visits so you don’t run out of medication. You should also know the early symptoms of prescribed medication withdrawal. Some people are at more risk than others for medicine withdrawal; speak with your clinician about this.
Q: What is severe spasticity?
A: Severe spasticity is a condition that results from an injury to or disease of the brain or spinal cord. Spasticity may make your muscles feel tight, stiff and difficult to move. With severe spasticity, you can experience stiffening of the muscles that makes your muscles feel like they are locked, or even jerk uncontrollably when you try to use them.
Q: What is TDD Therapy?
A: Targeted drug delivery is a treatment using prescribed medication that is delivered into the fluid around your spinal cord (intrathecal) to help manage severe spasticity. For long term treatment, the drug is placed into a pump that is surgically placed under the skin of your abdomen. The pump delivers prescribed medication through a small tube (catheter) into your spinal fluid. Your doctor can program the pump to deliver the appropriate daily dose for you. Before you can be considered for long term treatment, you must have a test dose to see how you respond to the drug when it is delivered in this way. After the test dose is done, your doctor will discuss the results with you and determine if you are an appropriate candidate for the therapy.
Q: Who is a candidate for TDD Therapy?
A: People who have severe spasticity resulting from conditions of the brain or spinal cord (such as multiple sclerosis, cerebral palsy, stroke, brain injury or spinal cord injury) may be candidates for TDD Therapy. If your spasticity is due to spinal cord injury or multiple sclerosis and is not controlled with medication taken by mouth or you have side effects that are not acceptable from oral medication taken to treat your spasticity, you may be a candidate. If you have had a brain injury due to trauma, you should wait for one year after your injury to be considered for TDD Therapy. Safety and efficacy in patients under the age of 4 has not been established.
Q: What are the most common side effects of intrathecal medication?
A: The side effects of intrathecal medication can include drowsiness, lightheadedness, dizziness, nausea and vomiting, low blood pressure, headache, seizures, and loose muscles. As with most medications, you can experience overdose (drug dose is too high) or withdrawal (drug dose is too low). Your doctor will discuss the possible effects of intrathecal medication and what to do if you experience any of the symptoms or side effects. Sexual dysfunction in men and women including decreased libido and orgasm dysfunction have been reported.
Q: What do I need to know if I am using intrathecal medication?
A: All patients and caregivers should receive information on the risks of the treatment. Your doctor should give you information of the signs and symptoms of receiving too much or too little medication (overdose or withdrawal) and what to do if you notice those symptoms.