Ed’s story TDD therapy for severe spasticity

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 targeted drug delivery is right for you.

Ed walking down street with female companion.

Life after stroke

In 2000, Ed experienced a hemorrhagic stroke caused by bleeding into the brain from arteriovenous malformations, which are masses of abnormal blood vessels. The condition had been treated, and he was recovering welluntil one morning in January 2003, when a blood clot traveled from his heart to his brain, causing an ischemic stroke and severe weakness on his left side. Ed found it difficult to get dressed and knew he needed help immediately.

After a month in the hospital, Ed was transferred to a rehabilitation facility where he had intensive physical and occupational therapy before returning home.

"The spasticity remained and it was extremely painful," recalls Ed. "It was like having a constant charley horse. I was able to walk, but the spasticity affected my gait."

Ed had been given injection therapy for severe spasticity in his upper arm, but the effect would diminish in 3 or 4 months. When Ed's doctor suggested ITB Therapy, Ed was interested.

Getting the pump

Ed had the screening test to see if the liquid medication would relieve his symptoms. "During the screening test, my left foot made full contact with the floor for the first time since the stroke," says Ed. "Because I had more foot surface on the floor, I could put more weight on my leg and I was sturdier. The change in my gaitfor the betterwas noticeable." Ed had the pump placed in December 2004.

Ed’s spasticity has been significantly reduced. He feels steadier on his feet. He is confident about spending time unsupervised while Andrea, his wife and the family caregiver, works.

Ed didn't experience any complications with his surgery. 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.

"Ed has more energy and his movements are freer with the pump," says Andrea. "I feel better going to work knowing he's comfortable staying home alone."

Ed adds that physical therapy has been more effective since he started the TDD Therapy. “Because it’s reduced my spasticity, I stretch better and am developing more range of motion. I look forward to getting more ability as time goes by."

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.