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  1. Basics
  2. Symptoms
  3. Diagnosis
  4. Treatment
  5. Prevention
  6. Knowledge Center

Our Approach

The experts provide highly specialized, customized genetic testing, diagnosis, screening and treatment for each patient and family with von Hippel Lindau disease. This team of highly focused physicians, which has a high degree of expertise in the complexities of the disease, personalizes your care to ensure the most-advanced therapies with the least impact on your body.

We see more patients with von Hippel Lindau disease than most physicians in the nation, giving us a remarkable level of experience and skill that can make a difference in the success of your treatment and your quality of life. We are designated as a care center by the national VHL Family Alliance.

It is very important that patients and families living with VHL have their care coordinated by a team of doctors and counselors with expertise in the various aspects of their care. Proper genetic testing, appropriate screening and appropriately timed therapies are all important factors of any treatment plan for VHL.

Sometimes von Hippel Lindau disease has no symptoms. When it does have signs, they vary from person to person and depend on the problems caused by the disease. These symptoms usually do not mean you have VHL. However, it is important to discuss any symptoms with your doctor, since they may signal other health problems.

Pheochromocytoma Symptoms

Pheochromocytomas may cause symptoms that are like what you feel in an emergency (“fight or flight”) situation. These include:

  • High blood pressure, either all the time or just sometimes
  • Sweating
  • Headache
  • Rapid or irregular heartbeats
  • Feelings of anxiety, panic and fear
  • Pale skin
  • Dizziness or lightheadedness when you stand
  • Tremor
  • Weight loss

Hemangioblastoma Symptoms

Symptoms of hemangioblastomas vary depending on their location.

Cerebellum

  • Difficulty walking and with muscle coordination
  • Dizziness
  • Headaches
  • Double vision
  • Vomiting

Spinal Cord

  • Decreased feeling in the arms, legs and body
  • Weakness
  • Difficulty walking
  • Difficulties with bowel and bladder function

Brain Stem 

  • Decreased feeling in the arms, legs and body
  • Walking difficulties
  • Swallowing difficulties
  • Headaches
  • Poor coordination

We offers the most advanced diagnostic methods for von Hippel Lindau disease, including precise imaging techniques. In addition, we can provide comprehensive, expert genetic testing and counseling.

VHL can be challenging to diagnose. It often affects more than one part of the body, and the symptoms are often vague. However, finding von Hippel Lindau disease early may mean you have a higher chance for successful treatment and better quality of life. That’s why it’s important to be tested periodically if VHL runs in your family. Also, it’s a good idea for everyone in your family to have genetic testing.

If you have VHL and develop eye problems or signs of a neurological problem, such as headaches, your doctor may recommend a thorough eye exam or MRI or CT scans of the brain.

Our Treatment Approach

Because VHL has the potential to cause a number of different problems, We brings together a team of experts from several disciplines to treat the disease. They work together to personalize your care, ensuring the most-advanced and most-effective treatments possible.

Surgery, including minimally invasive and laser surgery in some cases, is the main treatment for VHL-associated problems. Like all surgeries, surgery for VHL disorders is most successful when performed by a specialist with a great deal of experience in the particular procedure.

Von Hippel Lindau Disease Screening

Screening exams are important medical tests done when you’re at risk but don’t have symptoms. They help find disease at its earliest stage. In von Hippel Lindau disease, early diagnosis increases your chance for successful treatment and better quality of life.

Screening Guidelines for People with VHL Disease Who Do Not Have Symptoms

10 Years Old and Under

  • Complete general history and physical exam, including blood pressure measurement and neurological exam, every year
  • Thorough eye exam at diagnosis and every year
  • Ultrasound (link to definition) of the abdomen at diagnosis and every two years
  • CT (computed axial tomography) scan (link) or MRI (magnetic resonance imaging) (link) if a problem is found on the ultrasound or if laboratory tests for pheochromocytoma are abnormal
  • MRI of the brain and spine if you have neurologic symptoms
  • Tests for pheochromocytoma at diagnosis and every year if you have a family history of VHL 2 or mutations associated with VHL 2. If you have a family history of VHL1 or a mutation not associated with pheochromocytoma, you may want to be tested every two years
  • Tests for pheochromocytoma before any surgery
  • Hearing exam at diagnosis and every two years or as needed. This should include an MRI or CT scan of ear canals if you have hearing loss, ringing in the ears, dizziness or problems with balance

10 to 15 Years Old

  • Complete general history and physical exam, including blood pressure measurement and neurological exam, every year
  • Eye exam at diagnosis and every year; every six months during puberty
  • Ultrasound of the abdomen at diagnosis and every two years
  • CT (computed axial tomography) scan or MRI (magnetic resonance imaging) if a problem is found on the ultrasound or if laboratory tests for pheochromocytoma are abnormal
  • MRI of the brain and spine at diagnosis and every year
  • Tests for pheochromocytoma at diagnosis and every year in patients with a family history of VHL type 2 or mutations associated with VHL 2. If you have a family history of VHL1 or in patients with mutations not associated with pheochromocytoma, you may want to be tested every two years.
  • Tests for pheochromocytoma before any surgery
  • Hearing exam at diagnosis and every two years or as needed. This should include an MRI or CT scan of ear canals if you have hearing loss, ringing in the ears, dizziness or problems with balance.

15 Years Old and Older

  • Complete general history and physical exam, including blood pressure measurement and neurological exam, every year
  • Thorough eye exam at diagnosis and every year
  • Ultrasound of the abdomen at diagnosis and every year from ages 15 to 20
  • MRI of the brain and spine at diagnosis and then every year. If your doctor says you are at low risk, you may need an MRI every two years
  • CT or MRI scan of the abdomen at 20 or at diagnosis, then every two years. Alternate with ultrasound of every other year
  • Tests for pheochromocytoma at diagnosis and every year in patients with a family history of VHL type 2 or mutations associated with VHL 2. If you have a family history of VHL1 or gene mutations not associated with pheochromocytoma, you may want to be tested every two years
  • Tests for pheochromocytoma before any surgery and during pregnancy
  • Hearing exam at diagnosis and every two years or as needed. This should include an MRI or CT scan of ear canals if you have hearing loss, ringing in the ears, dizziness or problems with balance

If one of your parents has von Hippel Lindau disease, you have a 50% chance of getting it. Genetic testing is a way to look at the VHL gene to see if it has any changes. It is a good idea for all family members of a person with VHL to be tested.

Contact Us

TATA MEMORIAL HOSPITAL
Dr. E Borges Road, Parel, Mumbai - 400 012 India
Phone: +91-22- 24177000, 24146750 - 55
Fax: +91-22-24146937
E-mail : msoffice@tmc.gov.in (for patient care and queries) / hrd@tmc.gov.in(for administrative - HRD matters)

628540 (149)