The goal of spasticity and dystonia treatment is managing symptoms by improving movement and/or reducing pain. The earlier your child is evaluated, the better, so that treatment can begin sooner and hopefully avoid the need for surgery later.
We review all possible treatments available and draw on those that are most likely to help your child. As time goes on, we may modify the treatments through the feedback that you and your child give us.
Physical and occupational therapy for spasticity
Therapy is the first line of defense in diminishing muscle stiffness. Physical therapists (PTs) and occupational therapists (OTs) evaluate your child and recommend exercises that can help improve walking and activities of daily living such as getting dressed, eating, and using the toilet.
- The therapists assess your child’s strength, the range of motion, and the presence of tone or rigidity in his or her arms and legs. They determine the level of support your child needs to move in his or her natural environment (such as walking, crawling, or sitting), to participate in self-care, and to engage in play.
- They may recommend exercises, durable medical equipment, braces or splints (orthotics), serial casting, or outpatient therapies to help promote greater independence for your child.
Medication for spasticity
Various anti-spasmodic medications may help diminish high muscle tone. Some are taken orally, others injected. They all need careful monitoring because they can sometimes affect all muscles, not just the contracting ones, resulting in overall body weakness.
- Oral medications: Most oral medications used can help spasticity in the whole body. This is generally a good thing but has risks of making some muscles too loose or weak. The most common medications include baclofen, diazepam (Valium), and gabapentin. These medications work in different ways and have different side effects, which you should discuss with your doctor.
- Botulinum toxin (Botox/Dysport/Xeomin)/chemodenervation: This medication is injected directly into affected muscles that we are trying to relax to improve function or reduce pain. It has a temporary effect, usually lasting three to six months, and the procedure is usually done in clinic. The medication effects take about one week to start working, and effects peak at one month.
- Phenol or ethanol nerve blocks/chemoneurolysis: Phenol or ethanol is injected directly near an affected nerve to block signals by causing nerve damage to improve function or reduce pain. It has a temporary effect, usually lasting six to nine months. The injection works immediately, with additional improvements made with therapy. Many patients require sedation for this procedure because more precision is required to get the medication to the nerve, and the procedure can be uncomfortable.
- Cryoneurolysis (cryo): Like phenol nerve blocks, cryo is a specialized procedure using a needle to target affected nerves by causing nerve damage to improve function or reduce pain. However, no medication is delivered. Instead, we use a special device that generates an ice ball at the needle tip to freeze the nerve and block nerve signals. The ice ball causes less damage to surrounding tissue than phenol, and the injection works immediately, with additional improvements made with therapy. Cryo is an FDA-approved therapy for treating pain, where research so far in treating spastic pain has shown reductions in spasticity for at least six to nine months, with some patients experiencing substantial improvement for years with one treatment. Many patients require sedation for this procedure because more precision is required to get the medication to the nerve, and the procedure can be uncomfortable. Lucile Packard Children’s Hospital Stanford is one of fewer than five children’s hospitals in the U.S. offering this procedure. Our pediatric rehabilitation medicine/physiatry doctors perform this procedure.
- Intrathecal baclofen: Baclofen is a medication that can be delivered intrathecally (directly to the nervous system’s spinal fluid). Sometimes, a test dose or trial may be done to see how well your child may respond before pump placement. Most patients get their medication via a pump that is surgically implanted by a neurosurgeon in the child’s abdomen, with a tiny tube extended directly into the spinal cord. Then the pump is programmed to automatically release baclofen into the spinal cord around the clock, with dosing to be determined to achieve the best possible outcome.
Orthopedic surgery for spasticity
Over time, spastic muscles can cause joints to have very limited range of motion and can pull bones out of alignment. These conditions can be corrected by surgery. Typical surgeries include:
- Realigning bones that have been pulled out of alignment
- Relocating joints, such as hips, that are dislocated
- Lengthening muscles to improve their function
- Cutting certain tendons to decrease muscle tone
Neurosurgery for spasticity
Selective dorsal rhizotomy
Neurosurgeons at Lucile Packard Children’s Hospital Stanford have helped many children with the selective dorsal rhizotomy (SDR) procedure, often with dramatic improvement, especially in younger children and those with lower-limb spasticity.
- Using minimally invasive techniques, the neurosurgeon makes a small incision in your child’s back. With precise tools viewed under a microscope, the surgeon can enter the spine to determine which nerve roots are preventing muscles from relaxing.
- During the surgery, electronic devices are used to monitor individual nerves in the spinal cord.
- Impaired nerve roots are cut, so they no longer inhibit the normal relaxation response to stretching.
- SDR is followed by intensive physical and occupational therapy, usually in the inpatient setting for three to six weeks, followed by outpatient therapy.
Not all children are candidates for SDR, so consider this option carefully with advice and input from your care team. There is a similar surgery called a ventral dorsal rhizotomy (VDR), or anterior posterior rhizotomy, that involves cutting the sensory and motor roots, which can be an option for people with spasticity who do not walk for primary mobility.
Intrathecal baclofen (ITB) pump placement
Some children find that oral medications make them too drowsy, and other spasticity injections are not well tolerated. In these cases, a baclofen pump may be implanted so that the baclofen can be delivered directly into the spinal fluid. The neurosurgeon will test the right amount of baclofen to administer through the pump to be sure it provides the best possible outcome. The pump needs to be refilled every four to six months, depending on the size of the pump and the dose needed.
Deep brain stimulation
A novel treatment known as deep brain stimulation (DBS) uses computer technology to locate the areas of the brain that are misfiring and then modify those areas with impulses from an implanted electronic device. The DBS device involves a small wire implanted into the brain with a small battery pack under the skin in the chest. After placement, patients need several visits with the neurology clinic fairly frequently to find the right settings for the patient. After settings are established, visits are not as frequently required.
DBS was developed for adults about 20 years ago. In the past decade, it’s been in use for children with movement disorders including dystonia and spasticity. As with other surgeries, not all children will respond to this procedure, so you and your team will carefully analyze all available data to determine if DBS might benefit your child.
- Lucile Packard Children’s Hospital Stanford is one of the few children’s hospitals on the West Coast able to treat spasticity and other movement disorders with DBS.
- DBS can result in remarkable improvements in children with movement disorders. It can be used along with medication and therapy.
- The device acts like a pacemaker for use with the brain instead of the heart. It is programmed so that it can block the misfiring brain signals that cause spasticity.
- The implant can be removed if necessary. This may be useful if new or improved medications are created in the future, making the implanted device unnecessary.
Nerve surgery for spasticity
Hyperselective neurectomy
Hyperselective neurectomy is a surgical procedure that selectively cuts out specific small segments of motor nerve branches to reduce muscle spasticity in the arms or legs. It often preserves motor function and can provide lasting relief from spasticity for years. The procedure is performed by Paige Fox, MD , a plastic hand surgeon who specializes in peripheral nerve surgery. You and your team will carefully analyze your treatments to see if hyperselective neurectomy is a good choice for you.
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