A message for anyone recently diagnosed with an intramedullary or extramedullary spinal cord tumour
If you are reading this, it is likely that you or someone close to you has recently been told you have a spinal cord tumour. That moment can feel overwhelming, frightening, and deeply uncertain. Many people describe it as their world suddenly stopping while everyone else’s seems to continue as normal.
You are not alone. This page is written to help you understand, in plain terms, what may happen next, what is normal to experience, and where support can make a real difference.
First, a few important reassurances
- Spinal cord tumours are rare, and many healthcare professionals outside specialist neurosurgical teams may never have encountered one before.
- Having a spinal cord tumour does not automatically mean cancer. Many intramedullary and extramedullary tumours are benign (non‑cancerous), slow growing, and treatable.
- Outcomes vary widely. Two people with the same diagnosis can have very different experiences depending on tumour type, location, size, and how long symptoms were present before diagnosis.
Uncertainty is one of the hardest parts—but understanding the process can help you regain some control.
Understanding the diagnosis
Spinal cord tumours are usually described by where they sit:
Intramedullary tumours
These grow within the spinal cord itself. Common types include ependymomas and astrocytomas. Because they are inside the cord, surgery is often more delicate and recovery can take longer.
Extramedullary tumours
These grow outside the spinal cord but within the spinal canal, often pressing on the cord or nerves. Examples include meningiomas and nerve sheath tumours (schwannomas). These are often easier to remove surgically and can have very good outcomes.
Your consultant should explain which type you have, but it is absolutely OK to ask them to repeat or clarify. Many people need to hear it more than once.
What usually happens next
1. Further scans and tests
Most people will already have had an MRI. You may need additional imaging (sometimes with contrast) or scans of other parts of the spine. These help surgeons plan treatment safely.
2. Referral to a specialist neurosurgical team
Spinal cord tumours are typically managed by regional or national specialist centres. You may be referred away from your local hospital, which can feel unsettling but is a positive step.
3. Discussion of treatment options
For many people, surgery is recommended—either to remove the tumour fully or to decompress the spinal cord. In some cases, monitoring (“watch and wait”) or radiotherapy may be discussed instead.
You should be given the opportunity to ask:
- What are the goals of surgery?
- What are the risks for me?
- What might recovery realistically look like?
Surgery: what people often aren’t told
Surgery on or around the spinal cord is complex. Even when surgery goes well:
- Symptoms can worsen before they improve. This does not mean the operation failed.
- Recovery is measured in months and years. Nerves heal slowly.
- Fatigue is common and underestimated. Many people describe profound exhaustion for months.
Some people wake up feeling immediately better. Others need time, rehabilitation, and patience. Both experiences are normal.
Possible symptoms after treatment
Everyone’s experience is different, but people may notice some or all of the following:
- Weakness or heaviness in the legs
- Changes in walking or balance
- Altered sensation (numbness, tingling, burning)
- Pain or nerve pain
- Bladder or bowel changes
- Sexual dsyfunction
- Muscle tightness or spasms
- Fluctuating symptoms that vary day to day
These symptoms can be frightening,especially when they fluctuate, but they are common in spinal cord nerve injury and recovery.
Rehabilitation and adjustment
You may work with:
- Physiotherapists
- Occupational therapists
- Pain specialists
- Continence teams
- Neuro‑rehabilitation services
Rehab is not just about walking; it is about maximising independence, safety, and quality of life.
Progress is rarely linear. Small gains matter.
The emotional impact (often overlooked)
A spinal cord tumour diagnosis is not just a physical event. Many people experience:
- Shock and disbelief
- Grief for their “old body” or previous life
- Anxiety about the future
- Low mood or frustration
- A sense of being misunderstood by others
These reactions are valid. Psychological support, peer support, and talking to others who get it can be just as important as physical treatment.
Living with uncertainty
Even after treatment, people often live with:
- Ongoing scans
- Fear of recurrence
- Unpredictable symptoms
- Permanent or intermittent nerve damage
Over time, many learn how to pace themselves, adapt, and rebuild a meaningful life, often differently than planned, but still rich and fulfilling lives.
Spinal cord tumours are very rare and isolating. There is no single “right” recovery story, only your story.
If you are newly diagnosed, you may feel scared, numb, or overwhelmed. That does not mean you are weak at all. It just means you are human, facing something genuinely challenging.
Our advice?Take things one step at a time. Ask questions. Accept help. Use our website and Facebook Support Group.
Know that many people living with spinal cord tumours go on to build stable, meaningful livessometimes with limits, but often with new strengths they never expected to develop.