Surgery

A surgical procedure is something that people do not agree to lightly. However, there are some cases where a surgical procedure can bring comfort, relief from pain, and improved function. When considering surgery, though, there are some factors that people should weigh carefully.

Surgery for Cerebral Palsy

Surgery is usually not the first form of treatment considered in cases of Cerebral Palsy. Instead, treatment typically involves a less invasive combination of interventions such as therapies, drug interventions, orthotic devices, adaptive equipment, assistive technologies, and with caution complementary or alternative therapies.

However, while surgery cannot correct the brain injury that caused Cerebral Palsy, it is sometimes warranted in treatment of the resulting impairment or health conditions. The treatment goal is to help the child achieve an optimum level of ambulation, functioning, and appearance.

Surgical intervention is not recommended for every individual in every situation

Surgical intervention is not appropriate for everyone. What is considered ‘ideal’ for one individual is likely unique to his or her personality, health condition, lifestyle, resources, and preferences. A major consideration for surgery is whether the child can participate in the rehabilitation required post-operatively, and whether the family has the means to devote adequate daily attention to the child’s full recovery.

It is not unusual for an individual with Cerebral Palsy to undergo surgery on feet, ankles, legs, hips, wrists, arms, or shoulders, as well as on muscles, tendons, bones, or nerves, depending on treatment goals. Each individual’s circumstance is unique, and his or her treatment will be unique, as well.

Surgery on lower extremities is more common than on upper extremities for those with Cerebral Palsy; arm surgeries carry more risks related to sensory damage and have limited impact on functional abilities as compared to the potential benefits of surgery on the leg.

The focus is on managing the child’s Cerebral Palsy, not necessarily finding the perfect outcome. Not all deformities need to be corrected, nor is it advisable to try.

Surgery intervention is used only if benefit outweighs risk. Since surgical procedures have the limitations and the potential for serious complications, less invasive and alternative options are usually considered before surgery is recommended. Risks of surgery may include bleeding, infection, and loss of functioning, as well as the possibility that repeated or additional surgeries may become necessary. Risks involved in the surgery, as well as risks involved in not having the surgery, should be part of the decision-making process.

Most surgical procedures may not fully restore a child’s ambulation or functioning level to that of a child without Cerebral Palsy. Some surgical procedures may only improve the impairment to a modest degree, while some improvements are only temporary. Other surgeries may resolve an immediate problem, only to create another when the child grows and develops further.

Surgery is not a magic cure, and the family may be required to devote daily care for recovery. Many surgeries require extensive post-operative therapy. Even after surgery, orthotic devices, extensive therapy, casts and night splints worn for lengthy periods of time may be warranted. Each surgery comes with its own aftercare obligations, and residual rehabilitative expense, which should be considered when deciding upon an appropriate option.

Overall, it is believed the degree of improvement should justify the means of obtaining the improvement.

Six Common Surgeries for Treatment of Cerebral Palsy:

• Gastroenterology Surgery
• Hearing Correction Surgery
• Medicine Related Surgery
• Orthopedic Surgery
• Neurosurgery
• Vision Correction Surgery

What is the ideal time to schedule surgery?

Historically, multiple orthopedic surgeries on a child with Cerebral Palsy were performed at the same time, usually when the child was between seven and ten years old. Previously, the main consideration was the length of time spent in recovery.

With modern-day advances in medicine, however, many of these same procedures are less invasive with shorter recovery periods. Some are even performed on an outpatient basis.

Due to medical advancements, some health care professionals recommend staggering the surgeries into a schedule appropriate to the child’s age, capabilities, growth, and development level rather than expecting the child to undergo all surgeries together.

Health care professionals have found, for example, the best time to correct spasticity in the upper leg muscles – an obstacle to normal gait – is three to six years earlier than the surgery that may be required to lengthen hamstrings or Achilles tendons. In the past, performing these two surgeries at the same time at a later age meant the child’s abnormal gait pattern was already established. The child learned to compensate for spasticity and the spasticity was more difficult to correct when surgery was delayed.

Early correction can prevent secondary compensation, subluxation, and dislocations that develop when the body is trying to compensate on its own. Surgery can be scheduled prior to the body forming alternative compensation. Performed too early, however, some surgeries may necessitate repeat surgeries later in life.

Some surgeries are still recommended at the same time as other procedures to maximize benefits achieved during a child’s hospital stay, while minimizing disruption to his or her education and social life.

In some cases, physical therapy, drug therapy, or adaptive equipment can successfully delay or eliminate the need for certain surgeries.

Questions to ask the doctor when surgery is recommended

When discussing surgery with the child’s doctors, it is recommended that parents ask questions about goals, expected results, surgery success rates, risks of the procedure, risks of forgoing the procedure, effect on associative conditions, and rehabilitation expectations after surgery.

Following are questions to ask your child’s physician when the physician recommends a surgical option.

General

• What is the goal of the surgery?
• Is the surgery required or optional?
• How will my child benefit from the procedure?
• What is the risk involved in the procedure?
• What is the risk involved if the procedure is not performed?
• Is there a chance my child’s condition could worsen after surgery
• What degree of improvement is anticipated?
• Does the level of improvement justify the surgery and post-operative care required?
• Is the success of the surgery dependent upon the child’s ability to participate fully in a post-operative rehabilitation program?

Timing

• When in the child’s development process is it an ideal time to perform this operation? Why?
• What will happen if the surgery is delayed?
• What will happen if the surgery is cancelled?
• Is there any less invasive option that could be considered?

Cost

• Is this procedure covered by insurance?
• When is payment due?
• Can payment arrangements be made?

Procedure

• What preparation is required for surgery?
• Where will the surgery be performed?
• Can this surgery be performed on an outpatient basis?
• How is the surgery performed?
• What kind of anesthesia will be used (general, local, or regional)?
• How long will the procedure take?
• How successful is the procedure?
• What are the results I should expect from surgery?
• How long is recovery?
• What is expected after surgery?
• Will my child require adaptive equipment, assistive technology, or braces after surgery?

Facility and practitioner

• Where will the procedure take place?
• How common is this procedure in that facility?
• Who will be performing this operation?
• How much experience does the surgeon have with this procedure?
• Are interns or teaching assistants being utilized for this procedure?

Follow-up

• What post-operative care will be required after surgery?
• Does my child have the ability to participate fully in the post-operative rehabilitation program?
• What complications might develop (both immediate and long-term)?
• If biopsy is being performed, when are results expected? Will the doctor call me?
• What symptoms should I watch for?

Second opinion

• How do I go about obtaining a second opinion before making my decision?

To the best of their abilities, medical practitioners strive to provide medical care that does not interfere in the individual’s development toward becoming a competent, functioning adult.

Some medical practitioners take an overly pessimistic approach, carefully outlining all risks of performing and not performing surgery, while others have an overly optimistic perspective, which can be disappointing when a child experiences complications. It is common for parents to feel blame when outcomes are not optimal.

Ultimately, the goal is to work in partnership with medical practitioners so parents feel confident the best decision was made with the best available information. Ask, “Are you doing this for all the right reasons?”

You should agree upon a treatment plan you feel is safe, effective, and appropriate for your child’s situation.