Thursday, October 3, 2013

And so it goes...

It's been a long week... There has been altogether too much going on around here for me. A big part of that "too much" is that M's having a lot of medical issues again... and so the doctor visits, testing and procedures have begun again too.

M suddenly started having more pain in his hips about a month ago (he has a congenital hip malformation, and has had both hips "rebuilt" over the past 3 years... one in 2010, one in 2011). He always has hip pain but it's gotten significantly worse lately... so back to the orthopedist we went. I was happy to learn that M's regular ortho, who used to practice out of Children's Hospital, has switched over to University Hospital and sees adults now. Perfect... since M is 21 and really should start transitioning over to adult care.

The appointment was about the same as all his other ortho appointments, starting with an x-ray of his hips... but because University Hospital is a teaching hospital a resident came in first to go over the x-rays with us. He examined M's hips (such a painful exam... hard to watch) then showed us the x-rays saying he didn't see anything there, and he thought the pain was coming from tendinitis.  This might have sounded more reasonable to me had it not been for the fact that M's hip problems had been misdiagnosed as tendinitis for months before a super sharp x-ray technician saw the real problem and made note of it for his PCP.

Does this sound convoluted? I'm tired and probably not explaining things well.

So when the resident said it was probably just tendinitis, I strongly questioned his diagnosis... telling him that we'd already had that misdiagnosis, and I wanted to be sure there was nothing (mechanical) going on in those joints. Thankfully, about that time Dr V, M's regular ortho came in... he looked at the x-rays, we looked at them together and he found new problems with the hip that was fixed in 2010. (I guess tendinitis is the fall back diagnosis for joint pain when you can't see anything going on!) Apparently some of the bone that was removed from the femur during the first surgery (so the joint could move without impingement) has grown back. AND there is a little spur of bone on the edge of the hip socket that is hitting that new bone. It's been hitting it enough that it's worn a small hole in the bone. :( Poor M... no wonder he's been in so much pain!

Unfortunately we're looking at another surgery at some point to fix the problem... but we are all in agreement that it's not going to be now... or soon... if we can avoid it. We're going to start with a steroid injection into the hip(s) and see if that gives him enough pain relief to put off the surgery.

Dr V put it well during M's appointment when he said to the resident.. "There is no low-risk intervention with this patient." Yup... that about sums up M!

M's also been having more problems with his throat lately... choking on food he would normally be able to swallow. A visit to the PCP ended with an appointment for another swallow study and referrals to an ENT and neurologist. I had been thinking the choking was probably connected to M's tardive dyskinesia... but she (the PCP) thinks it might be the gastroparesis moving further up M's GI system. I hadn't thought in those terms and it's scary to think about the gastroparesis affecting first his gut and bowel, then moving up and affecting his stomach, and now moving up and affecting his throat and ability to swallow.  Scary stuff... stuff it's best not to think about too much.

Ever read Gone With The Wind? Remember Scarlett O'Hara? I'm good at pulling a Scarlett and saying "I won't think about it now. I'll think about it tomorrow"... that philosophy served her fairly well... Except when it came to Rhett of course.



The swallow study is next week, and we'll know more once it's done...

So it kind of looks like we are, once again, jumping on the medical merry-go-round... I'm hoping this time around it's a relatively quick trip and we can jump off again and leave the docs, procedures, appointments, and all that goes with them behind again soon.

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