Neurological Late Effects
Depending on where a child’s tumor was located and what kind of treatment the child received, they may experience late effects that impact their nerves or nervous system.
Types of Neurological Late Effects and What to Do
Speech and Language Problems
Trouble with communication or trouble finding words can frustrate and embarrass survivors. It can also get in the way of making and keeping friends.
Cognitive function (how the brain works) may be part of the problem if it’s hard for a survivor to remember a word they’re looking for, follow a conversation, or pay attention. Fatigue (a feeling of being tired) can also affect communication because it can make it harder to remember words or thoughts and pay attention.
Not all brain tumor survivors will have trouble with speech, but a survivor might have a greater chance of speech problems if their tumor was in the upper part of the brain.
What You Can Do About Speech and Language Problems
It can help to get rid of background noise and distractions. For example, turning off the TV in a room where a survivor is trying to have a conversation can make it easier to pay attention and hear what is being said.
It can also help survivors to take breaks when they get tired, to speak more slowly, and to focus on speaking clearly and at a steady pace.
Speaking more loudly to a survivor probably won’t help and might even be more distracting. Survivors can ask people to repeat themselves if they’re not sure they understood something someone said.
For some survivors it can help to get speech therapy to build stronger communication skills.
Hearing Problems
Trouble with hearing, like hearing loss or ringing in the ear (called tinnitus), can happen to survivors who received chemotherapy that affects hearing, like cisplatin or high-dose carboplatin
Radiation to the whole brain or radiation that includes the ear can also cause hearing loss by impacting the environment of the ear that allows it to properly interpret and relay signals about sound. This loss happens in several different ways, such as thickening of the parts of your ear that vibrate in response to sound and produce the correct signal to send to your brain or inflammation of the nerves responsible for sending that signal to your brain. Radiation can also cause problems with wax building up inside their ears. This is because radiation causes the skin of the ear canal and the wax to become much drier than normal. This results in a thick wax that sticks like glue to the ear canal. It’s important to talk to your care team about hearing loss as different causes of hearing loss require different treatment
What You Can Do About Hearing Problems
It’s a good idea to have a hearing test (called an audiogram) during and after chemotherapy or radiation treatment. If there are any problems, the hearing test will be done as often as the hearing specialist recommends.
For survivors with hearing loss, there are many kinds of equipment that can help, including devices students can use in the classroom, hearing aids, and cochlear implants (a small device placed by a surgeon that replaces regular hearing with a kind of electric hearing).
For problems with wax build-up, talk to your healthcare provider about using ear wax softening drops at home.
Seizures and Headaches
A seizure happens when there is a sudden burst of abnormal electrical activity in the brain. The risk of seizures is higher when a tumor is in the cerebral cortex or temporal lobe than in other parts of the brain. Tumor tissue that remains after surgery or scarring from treatment can create an area where seizures begin, called a seizure focus. Radiation can sometimes damage small blood vessels in the brain, causing tiny areas of bleeding called microhemorrhages. These small bleeds may also become a seizure focus or lead to other blood vessel problems in the brain.
Cavernomas (abnormal clusters of small blood vessels) may also develop in the brain months or years after radiation treatment. Cavernomas themselves usually don’t cause symptoms, but the blood vessel walls of a cavernoma are thin and may leak blood. Cavernomas can be seen on MRI scans.
Headaches, especially in females, can happen more often in survivors who get radiation to their brains. This happens more often in survivors who smoke.
Both headaches, seizures and heart problems can affect a survivor’s quality of life. Receiving follow-up care from a Neuro-Oncology survivorship program can help.
What You Can Do About Seizures, Headaches, and Cerebral Vascular Problems
It’s very important to keep checking for health problems throughout the life of survivors who received radiation to the head. Survivors should talk with their doctors and nurses about headaches and pain.
There are many different types of seizures with very different presentations. Follow-up with a neurologist will offer monitoring and treatment recommendations including medication and surgery.
For people who get headaches, it’s a good idea to keep a headache diary, including exactly what day headaches happen, where the pain is, how bad the pain is, and what medications are taken. Do not start smoking. If you already smoke, ask your doctor for help with ways to quit smoking. Follow-up with a neurologist is recommended.
Learn the early warning signs of stroke. Strokes happen when the flow of blood to one part of the brain is cut off. Strokes can happen to anybody but having radiation to the head may increase the chance of a stroke. Signs of a stroke include confusion that starts suddenly, trouble speaking, a severe headache, and numbness in the face, leg or arm.
The American Heart Association uses the acronym FAST: Face drooping; Arm weakness; Speech difficulty; Time to call. If you see these signs, don’t wait, call 911 right away.
Problems with Shunts
During treatment, some children may receive a VP (ventriculoperitoneal) shunt, a tube placed by a brain surgeon that allows extra fluid to flow out of the brain and down into the abdomen.
About half of the people who get a shunt will see the shunt stop working at some point. When that happens, they’ll need a shunt revision (a repair where a surgeon fixes or replaces the part of the shunt that isn’t working). Shunts can get blocked, broken, or infected.
Besides these problems, a VP shunt shouldn’t get in the way of a survivor’s day-to-day life. People with shunts don’t need to avoid any kind of activity and they don’t need to take antibiotics to keep the shunt from getting infected.
What You Can Do About Shunt Problems
Know the signs of a failing shunt. These include headaches, vomiting, lethargy (sleepiness), irritability, swelling or redness along the shunt tract, confusion, or seizures. If any of these things happen, contact your doctor or neurosurgeon. A CT or MRI scan will show if the ventricles are swollen with fluid and if shunt revision surgery is needed.
Balance and Coordination Problems
As people get older, many have more trouble keeping their balance. Survivors of brain tumors can have balance problems at a much younger age, and those problems can get worse faster than they do in other people.
Survivors who’ve had a brain tumor in the cerebellum or posterior fossa (areas in the lower back part of the brain) seem to have the greatest chance of developing problems with coordination and balance.
Being tired can make these problems worse, no matter where in the brain the tumor was located. This is important because poor coordination affects a survivor’s quality of life and can also lead to falls and injury.
What You Can Do About Problems with Balance and Coordination
Many activities can help to improve strength and coordination. These include physical therapy, regular exercise, and things like yoga and tai chi.
Survivors who need it can make their home a safer place by adding grab bars in the bathroom around the shower, the tub, and the toilet. A raised toilet seat may also lower the danger of falling. Having a bed and chairs that are not too high or too low can help survivors get up or sit down more easily.
If you can, live in a place that doesn’t have stairs. If you do have stairs, make sure they have solid handrails. Canes and walkers may also improve safety and give a survivor more freedom to get around.
