Standing Still

The recent meeting with the shoulder surgeon resulted in the same direction as the previous shoulder specialist and the general surgeon before that.  They all concur that there is not a surgical fix. They all concur that any surgery will fail within a short time period due to the connective tissue disorder. While the geneticist says that the surgeries will be a success in that they will add some stability, the surgeons say no way. Further more, we are told that getting one surgery will lead to another and another, and ultimately the surgeries and post healing will lead to increased damage beyond what the dislocations are doing.

What did we learn? We learned that she is not a strict posterior dislocation case and that she is truly multi directional, which makes sense. It was good to have it confirmed so we know just what we are dealing with. We were advised to go to Mayo if things got worse, but to otherwise plan to live this way. We were told that as she ages, her body will grow muscle mass that can help (if strengthened) to hold those joints in. This may be enough for her to learn to hold her own shoulders in, if she is willing and able. We were told there is no hope for a surgical fix when she stops growing.

The Doctor was nice enough and he is a well respected expert in his field. I asked if the ongoing hundreds of dislocations could have created a specific injury, over time, that could be fixed to help increase a level of stability.  He said he followed that logic and that we can order a MRI Arthogram of the left shoulder (as we have not had an MRI on that shoulder) to rule out anything major. He stressed that it would, indeed, need to be significant to result in surgery and if it were a small tear, as she has had in the past, they would let it heal on its own.

The appointments with the geneticist give us hope, as he tells us about surgical solutions that can decrease the severity of dislocations, or at least decrease the number of them. Not a total cure, but a respite. But the surgeons (and we have talked to 5, in total, now) all say No. So, our hope is raised, and then dashed again and again.

The latest doctor told me that we could keep chasing surgeons until we found one that would do surgery, but that we would regret the 6 months of painful recovery and the short lived benefit followed by the damage that would result once regression took hold. He did advise Mayo, again, for future investigations if needed.

So, we know roughly where we stand. It's a precarious position to balance, if you ask me.  It could be worse, so we must gather our blessings and move forward to the best of our abilities within the confines of movement that work the best for our daughter. In the meantime, I am awaiting a brilliant discovery or medical breakthrough that will make it all easier for her. That is my latest depository of hope.