Moving to Denver with VHL

First-time poster here ..
I'm going to be relocating from Detroit to Denver in the next few months, and while I've been lucky enough to have a clinical care center here, I know there isn't one in Colroad. I've lived in too many smaller areas before coming to Detroit where I couldn't find people familiar with VHL beyond what they were reading to me off of a page of a medical encyclopedia. But I know Denver is a booming area, and would think betwen its size and the CU hospital I can find folks who know what they're doing.

So I'm looking for recommendations, both for myself and my 2-year-old son, of specialists who are informed and experienced with VHL. He was just diagnosed through genetic testing. I've prettty much dealt with the whole spectrum - tumors or cysts in eyes, brain, kidney, pancreas and one adrenal over the years. Currently have a brain tumor, pancreatic cyst and RCC, but nothing requiring anything more than monitoring at this point. The eyes have seen better days, but are largely stable now

Any suggestions would be appreciated - I need to see if they line up with my wife's new employer's insurance, and if not, I'll find who they do accept and see if I can find an employer with those plans for myself.

thanks in advance

By Ed-ColoradoSprings
Posted March 14, 2009 at 9:17 pm
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I'm in Colorado Springs, so most of our "regular" family's care is here and not in the Denver area. But we've have had some specialists at University Hospital in Aurora that have been top notch. Perhaps their offices could help with recommendations:

Dr. Kevin Lillehei
University of Colorado Department of Neurosurgery
12631 E. 17th Ave., Campus Box C-307
Aurora, CO 80045
303-724-2289
Did surgery to remove hemgioblastoma from our son's spine.

Dr. Yang Chen
University of Colorado Hospital
12605 E. 16th Ave.
Aurora, CO
720-848-2756
Did Endoscopic Ultrasound procedures on me related to pancreatic cysts.

By lifeandhope
Posted March 15, 2009 at 12:24 pm
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I can also recommend Dr. Lillehei; he's a good doc. If you end up with Kaiser insurance I can tell you which doctors I have seen and like.

By n8writer
Posted March 15, 2009 at 12:48 pm
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Thanks. so much And it looks like they're both covered under our plan!

My ophthalmologist here in Detroit said he'd get me some suggestions of people he knows there, which hopefully leaves urology as the only "hole" in putting together a local team (tho admittedly I haven't checked to see if my urologist had recommendations of anyone out there.)

All these things add up to such a relief from the unique stresses we face every time we move

By mountaincindy
Posted June 4, 2009 at 11:04 pm
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Have you been successful in finding a doc here in Denver? We currently use docs at University Hospital but the care there has been declining recently. We are also looking for a PCP/Internist that is not reading out of the medical dictionary when my husband tells them that he has VHL. Any recommendations would be great.
Thanks

By mountaincindy
Posted June 4, 2009 at 11:06 pm
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Hi there girlfriend. Who do you use under Kaiser? We just canceled KP and when we were insured with them they were clueless about VHL and did not have a database of any other physicians within KP that were treating VHL patients. Love your picture btw :)

By lifeandhope
Posted June 5, 2009 at 3:04 pm
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Scott McAninch is my internist; he is in Westminster, but I believe he is not available to new patients. You can maybe write a letter and he may make an exception; I'm not sure how it all works. I am super pleased with Scott, he really works with me and listens to what I think I need. He is the only one I really work with here in Colorado; the rest of my care is through NIH and NCI. If the funding goes for either of those programs, I don't know what I'll do. I'll cross that bridge when I come to it.

Welcome to Inspire!

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