Medical Oncologist
CION Cancer Clinics
Eye screening in von Hippel-Lindau disease | CION Cancer Clinics
VHL can cause small blood-vessel tumours in the retina, often before any other organ is affected and sometimes in childhood. Found small, they can usually be sealed with a laser or frozen, and sight kept. This page explains why a yearly dilated eye examination matters even when eyesight is perfect, what the specialist looks for, and which symptoms need same-day care. 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
The short answer
Why does someone with VHL need regular eye checks?
Because VHL can cause small blood-vessel tumours in the retina, the light-sensing layer at the back of the eye, often long before any other organ is affected. Found small, they can usually be treated and sight kept. Found late, they can leak, scar and cost vision.
Often the first sign of VHL
These retinal tumours are called haemangioblastomas. In many people with VHL they are the earliest growth to appear, and they can start in childhood. They are not cancer and do not spread. The harm comes from fluid leaking into the retina, or scar tissue pulling on it.
Why good eyesight is not reassurance
Small tumours at the edge of the retina cause no symptoms at all. A child with VHL can read the smallest letters on the chart and still have a tumour that needs treatment. Only a specialist looking through widened pupils can see them. That is why the check is done every year, from early childhood, whether or not anything seems wrong.
A spectacle test at an optical shop does not look for these tumours. The check must be a dilated retinal examination.Inside the examination
What is the eye specialist looking for?
Where a tumour sits in the retina matters as much as how big it is. It decides both the risk to sight and the treatment.
How the check is done
Drops widen both pupils, and the specialist examines the whole retina with a bright light and lens, right out to its far edges.
May also include
- Wide-field photographs to compare next time
- A scan of the retina's layers
- Photos taken after a dye injection
Tumours at the edge of the retina
The most common kind. While small, they can usually be sealed with a laser or frozen with a probe in the clinic. This is where regular checks pay off most.
Tumours near the optic nerve
Less common and harder to treat, because the nerve carrying sight to the brain sits right beside them. The specialist may watch these rather than treat, to avoid damaging vision.
Leaking fluid and scarring
Signs that a tumour is causing trouble. Fluid in the centre of the retina blurs vision. Scar tissue can pull the retina away from the back of the eye. Both prompt treatment.
Not sure whether this applies to you?
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Signs that cannot wait for the next check
Sudden loss or blurring of vision in one eye, a dark shadow or curtain moving across the view, or a sudden shower of new floaters or flashes of light needs an eye specialist the same day. These can mean bleeding or a retinal detachment, and delay can cost sight. Say the person has von Hippel-Lindau disease when you call.
Across a lifetime
When do eye checks start, and how often?
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Infancy and early childhood: the first check
Eye checks are usually the first screening test a child with VHL has, starting in the first years of life. Young children are examined with drops and a patient specialist.
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Childhood and the teenage years: every year
A dilated retinal examination is repeated every year. School visits can be planned for holidays, and checks can be combined with blood pressure and other tests.
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After a tumour is treated: closer follow-up
The specialist checks that the treated tumour has sealed and looks for new ones. Visits are more frequent until things are stable.
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Pregnancy
Retinal tumours can grow during pregnancy. An eye check before conceiving, and during pregnancy if advised, is sensible.
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Adult life: for good
New retinal tumours can appear at any age. The yearly check continues through adult life, even after years without a finding.
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In the eye clinic
The words you will meet, in plain language
- Retinal haemangioblastoma
- A non-cancerous blood-vessel tumour in the retina. Older reports may call it a retinal angioma.
- Dilated examination
- An eye check after drops have widened the pupils, so the whole retina can be seen.
- Laser treatment
- A focused beam of light that seals a small tumour's blood supply. It is done in the clinic.
- Cryotherapy
- Freezing a tumour through the wall of the eye with a cold probe. Often used for tumours at the far edge.
- Exudate
- Fluid and fats leaking from a tumour into the retina. It can blur central vision.
- Retinal detachment
- The retina peeling away from the back of the eye. It is an emergency that needs same-day care.
Commonly believed
Four things families tell us, and what is actually true
"Her eyesight is perfect, so the eyes must be fine."
Small tumours at the edge of the retina do not affect eyesight. By the time vision changes, a tumour is usually larger and harder to treat. Perfect sight and a tumour can exist together.
"The eye test at the optician's shop covers it."
A test for spectacles checks how clearly you see. It does not examine the far edges of the retina, which is where most VHL tumours start. You need a dilated examination by an eye specialist.
"Laser treatment will damage the eye."
Laser on a small tumour at the edge of the retina usually leaves central vision unaffected. Waiting until a tumour is large is what puts sight at risk.
"Once a tumour is treated, the eye is finished with."
A treated tumour is usually controlled, but new ones can appear in either eye over the years. Yearly checks continue for life.
Being straight with you
What this page cannot tell you
It cannot tell you whether a tumour in your own eye needs treatment, or which treatment. That depends on its size, where it sits, whether it is leaking, and what the other eye looks like. Only the eye specialist who has examined you can weigh that up.
It cannot interpret your result
What your specific variant means is a question for the counsellor who ordered the test. The eye programme is the same for every VHL fault, but other parts of the plan can differ.
Who this does not apply to
Relatives who tested negative for the family's VHL fault do not need these yearly retinal checks, beyond ordinary eye care. Most people with floaters, blurred vision or a need for spectacles do not have VHL. Newer medicines that act on the pathway VHL controls are being used for some VHL tumours, but studies of their effect in the eye are still small.
Dilating drops blur vision for a few hours. Bring someone with you, and do not ride a two-wheeler home.Questions we are asked
Common questions about eye screening in VHL
At what age should my child's eye checks start?
In early childhood, and usually before any other VHL screening test. Retinal tumours can appear young, and they are easiest to treat when small. Your VHL team will give the exact starting age for your child.
Is the eye check painful?
No. The drops may sting briefly and the bright light is uncomfortable, but nothing touches the eye in a routine check. Young children may need gentle holding, and a parent can stay with them throughout.
What happens if a tumour is found?
Small tumours at the edge of the retina are usually treated with laser or freezing, often in the same clinic. Larger tumours, or those near the optic nerve, need more careful planning. Treatment aims to stop leaking and protect sight.
Will treatment affect my vision?
Treating a small tumour at the edge of the retina usually leaves the vision you use for reading and faces untouched. Some side vision near the treated spot can be lost. Your specialist will explain what to expect for your tumour.
Can VHL cause blindness?
It can, if tumours are found late or sit near the optic nerve. Regular checks and early treatment make this much less likely. Most people who keep their yearly checks keep useful vision in both eyes.
Why do they need photos with a dye injection?
A dye injected into the arm travels to the eye and shows up tumours and leaks that are hard to see otherwise. It is not done at every visit. The dye can turn skin and urine yellow for a day, which is harmless.
Can the check be done in our district?
It needs a retina specialist, which not every town has. Once your specialist knows your eyes, some follow-up may be shared closer to home. Keep copies of every report and photograph.
Who should we contact to set up checks?
Your VHL team or genetic counsellor can refer you to a retina specialist who sees VHL. Call the CION helpline if you are not sure where to start, and we will help you arrange it.
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)
Medical Oncologist
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Our centres in and around Hyderabad
Addressed by landmark, because that is how this city navigates. One helpline books a consultation at any of these centres, and your team will tell you where counselling and testing take place.
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Sources
- GeneReviews (NCBI) — Von Hippel-Lindau Syndrome
- MedlinePlus Genetics — Von Hippel-Lindau syndrome
- 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.
Keep reading
Related pages
Von Hippel-Lindau: every organ involvedWhere the eyes fit in the whole conditionBrain and spine surveillance in VHLThe same kind of tumour, watched by MRIVHL surveillance from childhood onwardsEvery check a child with VHL needs, in orderGrowing up with VHLFitting checks around school and family life
Talk to us
Has your child with VHL had a dilated retinal check this year?
Tell us about your family's VHL result and any eye reports you have. We will help you find a retina specialist and fit the checks into one plan. One helpline serves every CION centre.