Wondering if anyone out there knows of a good doctor in the Wichita, KS area? Wouldn't be past going to Kansas City or Oklahoma City to find one familiar with VHL. Just diagnosed and looking for someone with good knowledge base on the disease. Also, is it a wise thing to see a geneticist or genetic counselor on a regular bases? Thanks for any input.
Tara
My husband is yet to be diagnosed, but the doc is leaning toward VHL. He has spinal cord lesion at C4 and strong family history of tumors/cysts in kidney, brain, adrenals & pancreas. We'd never heard of VHL until she started working with us. We live in Topeka, but are going to KU Med Center in KC,KS, where there's a neuro who specializes in spinal cord lesions--her name is Dr. Ania Pollack. You might visit the website and check it out...
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