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Which advice would you give to someone who has just been diagnosed with Von Hippel-Lindau Disease?
See some advice from people with experience in Von Hippel-Lindau Disease to people who have just been diagnosed with Von Hippel-Lindau Disease
Take it one moment, step, day at a time.
Posted May 16, 2017 by Kerry-Anne 1000
They have a great support group on facebook.
They can treat this successfully most of the time
They can treat this successfully most of the time
Posted May 16, 2017 by Paul 1100
Review your abdominal images with a urologist. Ask questions. Schedule surgery if necessary. A partial nephrectomy is a harder recovery, but better in the long run than cryoablation. Review your FULL brain and spine MRI with a neurosurgeon. Ask questions. Make sure it is ordered as a FULL brain and spine, or some facilities won't image the sacrum. Schedule surgery if necessary. The longer you wait, the more nerve involvement occurs - and the less chance you will recover 100% of your nerve function. See a retinal oncologist, or a retinal specialist, at the be very least. We get just one set of peepers. Protect the heck out of them. Ask questions. See an ENT. Review your head CT images with them. Ask for a hearing test at least annually. If you are not comfortable at ANY time, GET A SECOND OPINION. You are your own best advocate. You know how you feel, how severe your symptoms are. Consider the advice of the experts, but in the end, the decision for treatment is yours. FIND GREAT doctors. Ask within the VHL community. You may have to drive some distance to get to the best docs, but the best is what you must demand!
Posted May 17, 2017 by Bobbi 1000
