So, it’s taken 12 years to even begin to get to the root of my son’s back pain. Thanks to a suggestion by this group he went to see a rheumatologist. This obviously brilliant and very compassionate doctor, explained what we now know what started this whole avalanche of problems in the first place. What a journey it’s been. The very recent diagnosis is Benign Joint Hypermobility Syndrome. Just a side note...it’s not very benign after all. Long story short - his joints move too much due to super flexible tendons that don’t hold his joints in place. This has particularly affected his lumbar spine region and is causing significant arthritis. Also what probably made him more prone to stress fractures (which he suffered while playing football) and spondylolisthesis. We are waiting for our follow-up appointment with the rheumatologist to see how to proceed from here.
But I wanted to post this in case it helps someone else solve a back (or other joint) mystery. We had never been referred to a rheumatologist by any of our (literally dozens) of doctors we’ve seen over the years and I just thought rheumatologists only treated rheumatic arthritis. We now know that they can treat a huge variety of types of arthritis. The doc we saw was so nice and very positive that he can help. No one else has been able to uncover the mystery that we’ve been dealing with for so long. Apparently this is an uncommon disorder that is rarely diagnosed by GP’s or even specialists. So, anyone dealing with arthritis from mysterious origins might consider visiting with a rheumatologist.
Once again, I can’t say this enough, thank you to this group. You’re literally been my lifeline over the years!