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PubMed This is a summary of 17 peer-reviewed journal articles Updated
Neurology

Long-Term Monitoring and Living with LCC

At a Glance

Living with leukoencephalopathy with calcifications and cysts (LCC) involves individualized brain-scan follow-up, tracking changes in balance, movement, memory, and speech, and using rehabilitation and emotional support to maintain quality of life.

Living with Leukoencephalopathy with calcifications and cysts (LCC) requires a long-term commitment to active surveillance. Because the condition can be progressive and unpredictable, your medical team will use brain scans to stay ahead of changes. However, there is no universally established surveillance schedule; follow-up is highly individualized based on your symptoms, cyst size, and recent surgical history.

The Purpose of Active Surveillance

In many conditions, a scan is only ordered when a patient feels a new symptom. In LCC, serial imaging is frequently utilized by specialists for several reasons [1][2]:

  • Silent Growth: Cysts can enlarge slowly over many years before causing enough pressure to notice [3][4]. Regular scans allow doctors to track the “tempo” of growth.
  • Recurrence After Surgery: If you have had a cyst drained or a reservoir placed, imaging is used to ensure the area remains stable. Cysts can recur or appear in entirely new locations [5][6].
  • Identifying Complications: Scans can detect hidden issues like small amounts of bleeding within a cyst (intracystic hemorrhage) or the early signs of fluid buildup in the brain (hydrocephalus) [6][7].

While regular monitoring is important, it cannot guarantee the prevention of an emergency. Your neurologist will set a frequency based on your history—this could be every few months after a surgery or annually if your condition is stable [8][5].

MRI vs. CT: Because CT scans involve ionizing radiation, doctors generally favor MRI for serial follow-up of white matter changes, cyst size, and mass effect. CT is incredibly useful for the initial assessment of calcifications or for problem-focused issues like acute hemorrhage, but repeating it should always have a specific reason to minimize cumulative radiation [9][6].

Managing “Scanxiety”

It is completely normal to feel a sense of dread or anxiety in the days leading up to a scan—a phenomenon often called scanxiety [10]. Waiting for results can be the most stressful part of the process.

To help manage this burden, consider these strategies:

  • Request Timely Results: Ask your doctor’s office how long it usually takes for a report to be finalized and plan a specific time to discuss the results [11][10].
  • Preparation and Distraction: If the MRI machine itself causes stress, ask the imaging facility if you can use music or a movie. In some cases, your doctor may prescribe a mild sedative, but this requires advance planning: you must have an escort, avoid driving or making important decisions afterward, and follow fasting instructions [12][13].
  • Acknowledge the Toll: Do not hesitate to tell your care team if the psychological weight of monitoring affects your daily life. Mental-health professionals and rare-disease caregiver organizations can be valuable tools [14][15].

Maintaining Quality of Life

The long-term course of LCC is highly variable. While many people experience progressive changes in movement, coordination, or memory, these often occur slowly [1][7].

Maintaining your quality of life involves focusing on adaptive strategies:

  • Rehabilitation Coordination: Working with physical and occupational therapists early can help you find tools and exercises to manage balance (ataxia) or stiffness (spasticity) [1][4].
  • Cognitive Support: If you notice changes in your memory or “processing speed,” speech therapists and neuropsychology services can provide techniques to manage daily tasks [7].
  • Whole-Person Care: Having a mental health professional and a genetic counselor as part of your team can help you navigate the emotional and familial aspects of a rare diagnosis [16].

Living with LCC means becoming an expert on your own “baseline.” By partnering with a dedicated care team and tracking your symptoms, you can manage the condition proactively and adapt to changes as they occur [17][5].

Common questions in this guide

How often do people with LCC need follow-up brain scans?
There is no single schedule for LCC. Your neurologist may recommend scans every few months after cyst surgery or less often, such as annually, when the condition is stable; the interval depends on your symptoms, cyst size, and surgical history.
Why is MRI usually preferred over CT for LCC follow-up?
MRI is generally preferred for repeated monitoring because it does not use ionizing radiation and can show white matter changes, cyst size, and pressure effects. CT is useful for seeing calcifications or evaluating urgent concerns such as acute bleeding, so your doctor may still order it when there is a specific reason.
Can a brain cyst return after LCC surgery?
Yes. A cyst can recur after drainage or reservoir placement, and cysts can also develop in a different location. Follow-up imaging helps the care team look for these changes and for complications such as bleeding within a cyst or hydrocephalus.
What changes should I report between LCC appointments?
Tell your care team about new or worsening balance and coordination problems, stiffness, movement changes, memory problems, slower thinking, or speech changes. Tracking how these changes affect walking, writing, daily tasks, or remembering names can make appointments more useful.
What can help with anxiety before an LCC MRI?
Ask the imaging center how long results usually take and arrange a specific time to review them with your doctor. Music, a movie, or a planned distraction may help; if a sedative is prescribed, you will need to follow instructions, arrange an escort, and avoid driving afterward.
Which therapies can support daily life with LCC?
Physical and occupational therapy can help with balance, coordination, stiffness, and daily activities. Speech therapy or neuropsychology may help with communication, memory, or slower thinking, while mental-health support and genetic counseling can address emotional and family concerns.

Get notified when new evidence is published on Leukoencephalopathy with calcifications and cysts.

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References

References (17)
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    Leukoencephalopathy with calcifications and cysts (LCC): 5 cases and literature review.

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    Expanding the Natural History of SNORD118-Related Ribosomopathy: Hints from an Early-Diagnosed Patient with Leukoencephalopathy with Calcifications and Cysts and Overview of the Literature.

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This page is for informational purposes only and does not constitute medical advice. Your neurologist and care team should tailor LCC imaging, rehabilitation, and support to your situation.

Guide contents Leukoencephalopathy with calcifications and cysts
Research & Literature
05 Treatment and Surgical Management of LCC