Aug 14, 2018 Latest post:
Oct 31, 2018
Hallie was diagnosed with Von-Hippel Lindau (VHL) disease in April of 2013. VHL is a rare disease that causes tumors and cysts to grow in your body. They can grow in your eyes, brain and spinal cord, kidneys, pancreas, adrenal glands, and reproductive tract. The tumors are usually benign (non-cancerous). But some tumors, such as those in the kidney and pancreas, can become cancerous.
Hallie was diagnosed in 2013 because she was having vision problems due to what turned out to be multiple tumors in her right eye. The retinal specialist (Dr R) immediately suspected VHL based on the type of tumors he saw in her eye at the time. Hallie had a genetic test done which confirmed the VHL diagnosis and her dad and I underwent genetic testing to determine if we were carriers. Neither of us were carriers which means that neither Lindsey or Michelle would have VHL. Approximately 20% of patients with VHL like Hallie, are the first in the family to have an alteration in the VHL gene. Neither parent is affected, but these people have VHL.
Dr R referred Hallie to the University of Minnesota for a full body MRI and ultrasound because he was concerned that she may have tumors in other parts of her body. She was found to have tumor in the base of her brain and multiple tumors in her spinal cord. All of those tumors were recorded, measured and no treatment recommended because of their small size other than annual full body MRI monitoring around May/June each year.
In 2013 Dr R was able to successfully remove all of the tumors in her eye with a laser but she was left with some irreversible vision loss in her right. She continues to be seen by Dr R every 3-4 months to closely monitor both eyes. He has successfully removed all of the tumors in both eyes for her over the past 5 years. We love Dr R.
In June Hallie went in her for her 2 hour annual MRI at the University of Minnesota. We reviewed the results with Dr M and he stated that one of the tumors in her spine had grown considerably. He was meeting with the U of M neurosurgery team the next day and said they would be reviewing the results of Hallie's MRI to discuss next steps. A few days later Hallie was scheduled to meet with her surgeon Dr G. Dr G reviewed the treatment options and ultimately recommended surgery to remove the tumor inside her spinal cord. Her 10 hour surgery was scheduled for Monday, August 13.