Index of Medical Topics

Stereotactic Radiosurgery (Gamma knife)

• Stereotactic Radiosurgery or Gamma Knife, report of our survey on the success rate with stereotactic radiation and VHL.
• Caution Urged for Stereotactic Radiosurgery, by Gail S., Tennessee, with Joyce Graff
  • Questions to Ask the Doctor
• Focus Conference on Stereotactic Radiosurgery - May 2, 1997

ELST: Hearing, Tinnitus, Endolymphatic Sac Tumors

• Endolymphatic Sac Tumors: diagnosis and treatment, by Russell R. Lonser
• Endolymphatic Sac Tumor: Hearing Loss in VHL
• Hearing Aid for VHL Patients with Bilateral Endolymphatic Sac Tumors

  "...the option of cochlear or brainstem implants should be considered and discussed before tumor surgery. . . .The auditory nerve must be preserved during surgical removal of the tumor."

• Kempermann et al., Deafness due to bilateral endolymphatic sac tumors in a case of VHL
• Ask the Experts: Surgery for ELST
• Ask the Experts: Tuning out Tinnitus
• Clinical Study at NIH: ELST

Kidney

• VHL in the Kidney, from Handbook
• Articles on VHL in the Kidney
• Kidney Study Shows Effectiveness of Conservative Treatment
• Clinical Trials for Kidney Lesions
• P. Choyke, Preserving Normal Function: Kidney, Adrenal, Pancreas
• Link between VHL and Sporadic Kidney Cancer
• The latest findings from the National Cancer Institute's research on the genetics of kidney cancer; sometimes research studies and clinical trials.
• Andrew C. Novick, Kidney cancer and kidney failure in VHL
• Gladys M. Glenn, Renal cell carcinoma familial and sporadic types, molecular genetics.
• Hiltrud Brauch, Somatic VHL mutations in clear cell renal carcinomas
• Christophe Béroud, Detection of VHL gene mutations in sporadic renal cell carcinoma and development of a VHL database
• H. Jochen Decker, Mutational analysis of the VHL tumor suppressor gene in 106 sporadic renal cell carcinomas: involvement of the clar cell type as well as the chromophilic type
• Ask the Experts: Kidney Stage or Grade
• Hartmut P. H. Neumann, Tumor Growth and Radiology

Kidney Transplantation

• Q&A About Kidney Transplantation
• Andrew C. Novick, Kidney cancer and kidney failure in VHL
• A Gift of Love, by Bob Horning - a kidney transplant story
  • Religious opinions about Transplantatio

Adrenal Glands

• Learning about Pheochromocytoma, report from the First International Symposium on Pheochromocytoma
• Pheos and Children, by Alison E., Texas
• New Technique: Laparoscopic Surgery for Pheochromocytoma, Prof. Hartmut P.H. Neumann, M.D., interviewing Prof. Günter Janetschek
• VHL in the Adrenal Glands, from Handbook
• P. Choyke, Preserving Normal Function: Kidney, Adrenal, Pancreas
• Peggy Graham, R.N., The Many Masks of Adrenal Involvement
• Testing for Pheochromocytoma
• VHL Family in Hungary, Hannah S., Budapest
• Hartmut Neumann, Lesions of endocrine organs in von Hippel-Lindau disease
• Cornelius J. M. Lips, Renal cell carcinoma in von Hippel-Lindau disease: Strategies in early detection and treatment
• Dominique Chauveau, Renal involvement in 43 consecutive patients with von Hippel-Lindau disease
• Nobuo Shinohara, Nephron-sparing operation for renal cell carcinoma in von Hippel-Lindau disease.
• Laura Schmidt, A Canadian family with hereditary papillary renal carcinoma (not VHL)
• Artist and Entrepreneur: Pierre Jacomet (undiagnosed pheo for 50 years)

Pancreas

• VHL in the Pancreas
• P. Choyke, Preserving Normal Function: Kidney, Adrenal, Pancreas

Epididymis and Broad Ligament

• Caring for your Reproductive Health
• Hastening the Road to Diagnosis: Role of the Broad Ligament Cystadenoma in Early Detection of VHL, by Gale P. James. Ohio

Pregnancy

• Pregnancy and VHL, by Dr. Yasser El-Sayed, perinatology and obstetrics, Stanford University Medical Center.
• VHL and Pregnancy: Mother Care
• P. Grimbert, Pregnancy in von Hippel-Lindau disease
• Greigh Hirata, Hemorrhage into a Spinal Cord Tumor in a Pregnant Woman
• Greigh Hirata, Cancer and Pregnancy
• Special issue: Childbearing Choices
• Pre-Implantation Testing

Transplant Issues

• Concern about using Coumadin (warfarin)
• Osteoporosis: a side effect of steroid use

Prevention, or at least Softening the course of the disease

• Smoking and Kidney Cancer Risk
• Physical Activity and Immune Function, by James S. Huddleston, M.S., P.T.

"Moderate endurance exercise, such as brisk walking, stimulates positive changes in ... the body's first lines of defense ... On the other hand, high intensity exercise may have a negative impact on immune function."

• Berton Zbar, M.D., Cancer in Families: a model for cancer prevention and treatment, and a priceless resource for gene discovery.
• Importance of Sustaining the Patient's Immune System and Stamina before and after surgery
• Charles Wilson, M.D., Science Isn't Enough
• A Word to the Wise about Nutrition
• Vegetables: Count on 3-5 Servings a Day
• Ask the Experts: Carpet Fumes
• Ask the Experts: Smoking

Facilitating Recovery from Surgery

• Importance of Sustaining the Patient's Immune System and Stamina before and after surgery
• Recover Faster: Prepare for Surgery by Peggy Huddleston

Understanding the Genetics of VHL

• Know Your Mutation! by Berton Zbar, M.D., U.S. National Cancer Institute
• Recent Insights into the Functions of the von Hippel-Lindau Protein, by William G. Kaelin, Jr., M.D., Ph.D., Dana-Farber Cancer Institute, Boston, Massachusetts
• Link between VHL and Sporadic Hemangioblastoma of Brain and Spinal Cord
• Link between VHL and Sporadic Kidney Cancer
• The NCI VHL Classification System
• Role Found for Tumor Suppressor Gene, Dr. Richard Klausner, National Cancer Inst.
• William Kaelin, Functional analysis of the von Hippel-Lindau gene product
• Michael Chamberlin, Basic mechanisms of transcript elongation by RJNA polymerases
• Thomas Stackhouse, Phosphorylation of the VHL tumor suppressor protein by casein kinase II
• Nikolai Kley, Characterization of the VHL tumor suppressor gene and VHL knock-out mice

Pros and Cons of DNA Testing

• Ask the Family: The Unaffected Sister
• Ask the Experts: Testing Children
• To Know or Not to Know, whether and when to test young children
• Ask the Experts: DNA Testing
  • Should we test again? - Dr. Roberta Pagon
  • How long should it take? - Joyce Graff

Genotype/Phenotype Correlation in VHL

• Taro Shuin, Germline mutations in the von Hippel-Lindau disease gene in Japanese VHL.
• Frederick J. Hes, Genotype/phenotype correlation in Dutch VHL families
• Eigil Kjeldsen, von Hippel-Lindau's disease in Denmark: past, present, and future.
• S. Olschwang, Genomic characterization of alterations associated with the VHL disease in France.
• Eamonn Maher, England, Genotype-Phenotype correlations in VHL
• More than 500 Mutations found in the VHL gene

Prospects for New Therapies

• One Biomarker for Angiogenesis - reporting research of John Heymach, Dana Farber
• William Kaelin, Prospects for new anti-cancer drugs, based on tumor suppressor genes
• Angiogenesis in the News
• Information on Clinical Trials

History of VHL

• Y. Edward Hsia, M.D., Introduction to Hawaii 96 Symposium
• James M. Lamiell, M.D., History of VHL (abstract, full article)
• Hartmut P.H. Neumann, M.D., VHL: progress, problems, and prospects (abstract, report)
• Joyce W. Graff, VHL: consumer concerns, needs, and hopes (abstract, report)

Nursing Issues

• Debra Schmidt, Nursing assessment in cancer (abstract)
• Ginnie Coggins, Nursing Management in cancer (abstract)

See also, the Family Index

• Personal Stories can be revealing for difficulties in diagnosis.  (In the Search utility, use the keyword "mystory" or see the listing in the Family Index
• Nutrition and Complementary Therapies are important for keeping the spirit and stamina strong for dealing with chronic illness and multiple surgeries.  Stamina and the strength of the immune system have a strong bearing on the number of new tumors a patient is likely to experience.