spine/lower extremities pain years after laminectomy

Hi everyone,

My 51 year-old husband has been dealing with VHL since 1999. A long list of the usual surgeries (13, plus eye lasers) and issues, but he's currently between interventions. We're trying to get a diagnosis for symetric, burning pain in his hips and legs whenever he walks up an incline, or longer distances on the level. Pain stops as soon as he stops. Started 6-7 years ago in the hips, radiating down, and is really interfering with life now. He's a landscaper, and has a very high threshold for pain... which is chronic in a dozen places.

Initially we thought we had it nailed when his GP noted from an MRI report that he has nodules on his spine, right at the L2-L3 laminectomy location from a 2000 spinal tumor removal , in addition to the usual missing bone, disc degeneration, a bit of bulging, etc. The symptoms were a perfect match for nodules impacting the nerves. By nature of his work his back has always been "bad", but this is a new wrinkle. Went to an orthopedic neurologist who did the usual evaluation (Hubby's impressively flexible despite it all) and said the MRI showed no indication of infringement upon the nerves, showing us the scans - indeed, nothing pinched to note) and said it's circulatory, go see a vascular specialist. Which we are going to been seen by in 2 months. While we wait, I figured I'd see if anyone else in the VHL community has run into this development. I recognize that it's easy to resist a diagnosis that doesn't fit our own theories, but since it is so very specifically triggered - wheeling a wheelbarrow doesn't hurt, but a handicap ramp is brutal - I wonder if the MRI, laying flat on a table, misses a position/posture shift while walking uphill. The fact that he has nodules makes me think friction, they are on the nerves that run through the hips and legs according to his GP.

One of his old docs called VHL patients "spotted zebras" in that many docs never seen them, and are often misdiagnosed. Hubby is a diabetic, and smokes, so a snap conclusion is easy to understand... It just seems like a poor "fit".

Anyone else have similar experience?