Medical Oncologist
CION Cancer Clinics
Brain and spine surveillance in von Hippel-Lindau disease | CION Cancer Clinics
People with von Hippel-Lindau disease can develop small blood-vessel tumours in the brain and spinal cord. They are not cancer, but they can press on nerves as they grow. Regular MRI scans find them early so your team can decide calmly when, and whether, to treat. This page explains what the scans look for, when they start, and which symptoms need help the same day. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Why does someone with VHL need regular brain and spine scans?
- Where do VHL tumours appear in the brain and spine?
- When do brain and spine scans start, and how often?
- The words you will meet, in plain language
- Four things families tell us, and what is actually true
- What this page cannot tell you
- Common questions about brain and spine scans in VHL
The short answer
Why does someone with VHL need regular brain and spine scans?
Because VHL can cause small blood-vessel tumours in the brain and spinal cord, called haemangioblastomas, and a regular MRI finds them before they cause harm. They are not cancer and do not spread, but they can press on nerves as they or their fluid-filled cysts grow.
What the scans are for
The aim is not to remove every tumour the moment it appears. Many haemangioblastomas stay the same size for long periods and never need treatment. The scans let your team watch each one, compare it with the last picture, and step in at the right moment, before symptoms become damage.
Why MRI, and not CT
MRI shows the back of the brain and the spinal cord in fine detail and uses no radiation. That matters for someone who will be scanned many times over a lifetime. A contrast dye is usually injected during the scan to make small tumours stand out.
A tumour on the scan is a reason to watch closely. It is not, on its own, a reason for surgery.What the MRI is looking at
Where do VHL tumours appear in the brain and spine?
Haemangioblastomas favour a few places. Where one sits decides what it can do and how closely it is watched.
The cerebellum
The back of the brain, which controls balance and coordination. This is the most common site. A growing tumour or cyst here can cause unsteadiness, and can block the flow of brain fluid.
Can cause
- Headache, often worse in the morning
- Unsteady walking or clumsiness
- Nausea or vomiting
The spinal cord
Tumours here can cause neck or back pain, and numbness, tingling or weakness in the arms or legs. Changes in bladder or bowel control need prompt attention.
The brainstem
The narrow stalk joining the brain to the spinal cord. Tumours here are less common but sit close to vital nerves, so even small changes are discussed carefully by the team.
The cyst beside the tumour
A fluid-filled cyst often forms next to a haemangioblastoma. The cyst, not the tumour, frequently causes the symptoms, and it can grow while the tumour itself stays small.
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Signs that cannot wait for the next scan
A sudden severe headache with repeated vomiting, drowsiness that is hard to rouse, new weakness in an arm or leg, or sudden loss of bladder or bowel control needs the nearest emergency department the same day. Tell them the person has von Hippel-Lindau disease and bring the last MRI report. Do not wait for the next scheduled scan.
Across a lifetime
When do brain and spine scans start, and how often?
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Childhood: symptoms, not scans
Brain and spine tumours are uncommon in young children with VHL. Screening in these years usually focuses on the eyes and blood pressure, with a neurological check at each visit.
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The early teenage years: the first MRI
Most published schedules begin brain and spine MRI around the start of the teenage years. Your team will set the exact age.
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Adolescence into adult life: a regular rhythm
Scans are then usually repeated every other year, often combined in one visit. A tumour that is growing, or a new symptom, brings the next scan forward.
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Before and during pregnancy
Haemangioblastomas can grow during pregnancy. A scan before trying to conceive is sensible, and MRI without contrast can be done during pregnancy if needed.
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For life
New tumours can appear at any age, so scanning does not stop in middle age. The gap between scans may change, but the programme continues.
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On your MRI report
The words you will meet, in plain language
- Haemangioblastoma
- A non-cancerous tumour made of blood vessels. It does not spread, but it can press on the brain or spinal cord.
- Syrinx
- A fluid-filled cavity inside the spinal cord, often caused by a nearby tumour. It can cause numbness or weakness.
- Contrast enhancement
- A spot that lights up after the dye is injected. In VHL this usually marks a haemangioblastoma.
- Hydrocephalus
- A build-up of fluid in the brain because its drainage is blocked. It causes headache and vomiting and needs urgent care.
- Stable
- No change since the last scan. This is the most common and most welcome word on the report.
- Interval growth
- The tumour or cyst is larger than on the previous scan. It prompts a discussion, not always treatment.
Commonly believed
Four things families tell us, and what is actually true
"It is a brain tumour, so it must be cancer."
Haemangioblastomas are not cancer and do not spread to other organs. The concern is pressure on nearby nerves, which is why size, position and symptoms matter more than the word tumour.
"Every tumour on the scan must be operated on."
Many are watched for years without treatment. Surgery or focused radiation is usually offered when a tumour causes symptoms or grows in a way that threatens to. Each operation carries its own risks, so timing matters.
"I feel fine, so I can skip this year's MRI."
Tumours and cysts can grow for some time before they cause symptoms. The scan exists to catch that silent growth while there are still the most options.
"Any scan centre will do, so we change every time."
Growth is judged by comparing scans. Keep every disc and report, and ask that the new scan be compared with the old one. Staying with one centre where you can makes this far easier.
Being straight with you
What this page cannot tell you
It cannot tell you whether a tumour on your own scan needs treatment. That decision weighs its size, its position, the cyst beside it, how fast it has changed and how you feel. It is made by a neurosurgeon and a VHL team looking at your images together.
It cannot interpret your genetic report
VHL faults differ, and some change which organs are most at risk. What your specific variant means is a question for the counsellor who ordered the test.
Who this does not apply to
Relatives who tested negative for the family's VHL fault do not need this scanning. Nor does someone with a single haemangioblastoma and no VHL fault on testing, though they may still be followed for that one tumour. Most people with headaches do not have VHL, and headaches alone are not a reason for this programme.
If scans are hard to reach from your district, ask whether the brain and spine can be done in the same visit.Questions we are asked
Common questions about brain and spine scans in VHL
How long does a brain and spine MRI take?
Longer than a single scan, because the whole spine is imaged as well as the brain. Expect to lie still for a good while. The machine is loud, and you will be given ear protection. Ask for breaks if you need them.
Is the contrast dye safe to have again and again?
It is widely used and generally well tolerated. Tiny traces can stay in the body, and research on what that means is continuing. Your team uses contrast when it adds real information. Tell them about any kidney problems or past reactions.
Can a child have the MRI without anaesthesia?
Many older children can lie still with preparation and a parent nearby. Younger or anxious children may need sedation. By the time spine scans begin, most children manage well once they know what to expect.
What happens if a tumour is growing?
The team reviews the images and your symptoms. Options include a shorter gap before the next scan, surgery, or focused radiation. Surgery is usually timed for when a tumour is causing, or about to cause, symptoms rather than as soon as it is seen.
Do these tumours come back after surgery?
A completely removed haemangioblastoma rarely regrows in the same place. But people with VHL can develop new ones elsewhere over time, which is why scanning continues after an operation.
Should I worry about every headache?
No. Most headaches are ordinary. A headache that is new, persistent, worse on waking, or comes with vomiting or unsteadiness deserves a call to your team. A sudden severe one needs emergency care.
Can I get pregnant if I have a brain tumour from VHL?
Many women with VHL have healthy pregnancies. Plan ahead: a scan before conceiving lets the team deal with any tumour that looks likely to grow. Your obstetrician should know about VHL from the first visit.
Who should read my scans?
Ideally a radiologist and a neurosurgeon who have seen VHL before, comparing each scan with the last. Call the CION helpline if you need help finding a team, and bring every previous disc and report.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- MedlinePlus Genetics — VHL gene
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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Not sure when your family's next brain and spine scan is due?
Bring your last MRI reports and your genetic result. We will help you set up a surveillance plan and find a team that has seen VHL before. One helpline serves every CION centre.