Stereotactic Radiosurgery

Stereotactic radiosurgery (SRS) is the use of finely focused beams of radiation, aimed from many angles toward a target tumor, to disable the tumor and hopefully keep it from growing. SRS is the generic name for this kind of procedure. Many different machines are used to deliver the radiation beams including the Gamma Knife, Linear Acceleteror (Linac), Peacock Conformal Therapy, Cyberknife, Proton Beam, and Shaped-Beam, Intensity-Modulated Radiation Therapy (IMRT), and Tomotherapy. In this survey we will use the term "SRS" to refer to all forms of stereotactic radiosurgery.

SRS has now been used for more than 15 years on various hemangioblastomas. However very few centers have significant experience with using this technology on hemangioblastomas. It is therefore very important that you do your homework -- as an educated consumer should -- to make sure the proposed treatment plan is going to work well for you. You may wish to read the results of our survey.

Please be sure to read the following two pages:

(1) Caution Urged on Stereotactic Radiosurgery. This is the story of three women with VHL who all had SRS -- one very successful, one needed open surgery anyway, and one near disaster. We tell you this story not to scare you, but to help you see what tumors can be treated successfully, and which ones really should not be touched with SRS.

(2) A list of Questions to Ask the Doctor, to make sure they have thought through the special issues that can arise with hemangioblastomas. This information is also in the Handbook. Optimally, share the full handbook with your doctor.

After you have been through this information with your team, if you are ready to proceed, there is one more safeguard. We are in touch with some physicians who have years of experience with VHL and hemangioblastomas, and a record of successful outcomes. They are willing to review your treatment plan, to make sure your team has prepared a plan that will succeed for you. You can request a "second opinion" from them, which is a service you pay for. All health insurance plans will fund a second opinion.

If you are interested in lining up a second opinion, please contact us.

Survey Results

In April-July 2005 we asked people with VHL who have had stereotactic radiosurgery to share their results with us.

See the report from that survey.