Hello all. I am 13 years post Chiari decompression surgery and 10 years post VP shunt surgery for an arachnoid cyst. I am doing great and thankful I have not had to see a neuro doc since I was released from care after my VP shunt surgery 10 years ago. This year I was diagnosed with mild scoliosis in my lumbar spine and a degenerating disc between L5-S1, both which appear to be common for Chiari patients.
I was recently diagnosed with IgA Nephropathy (a progressive kidney disease) and, while I know it's a long shot, I am curious if this is something other Chiari patients are experiencing. Thanks!
Jo, so sorry to hear this. I don’t know if there is a com mainly with these two. You can always search the subject in the key word search Bar at the top of the discussions page. Let us know if you find something. How are you feeling with this condition?
Thanks to you both. I am feeling fine. This started with a routine physical exam and a standard urine test. Over 10 months my urine has been tested and retested, bladder and urinary tract disorders ruled out, other auto-immune diseases like Lupus ruled out, types of cancer that cause kidney disease ruled out. Fast forward to a kidney biopsy and that was how it was diagnosed. I really have no symptoms at this time besides the microscopic blood in my urine and occasional flank pain, which makes for a very good prognosis. Though it is progressive and does lead to kidney failure, it appears I have the kind that progresses slowly and I am likely to die of old age before I would get to the kidney failure stage. I am 47 years old.
I will look into Ehlers Danlos Syndrome. Thanks for that suggestion.