This is a bit late. I had it mostly written, but things got crazy. I am now three months post-op left shoulder and it is doing really well! I am so grateful and relieved. In the past month, more activities have been added back, PT rehab advanced, etc. I saw my surgeon right at 3 months and he is pleased with strength, range of motion, etc. He has no concerns. He said my shoulder will continue to make progress for several more months, but more slowly. The stiffness with internal rotation is completely normal and internal rotation is usually slowest to come back. He also cleared me to start trying to use my arm with swimming!
I had been dreading the travel for surgeon follow up for 6-week post-op check. It was a rough trip, but I survived. However, back pain never calmed after that trip, but rather has continued to worsen. Thus, I was dreading this trip even more. My dad offered to drive me! Even with him driving, being able to ride with seat fully reclined, it was not a pleasant trip. But, it was also very clear I would not have gotten through it if I had tried on my own. So grateful he was available and willing!
I also saw the physical therapist I have seen to check hips before hip surgeon appointments. This was a problem-solving mission. I was pretty sure hips were fine, but back and SI joint pain so severe, so similar to some of the compensation from pre-op hips, that I wanted the perspective of someone who was not dealing with the entire mess, who knew me, knew hips, knew Ehlers-Danlos syndrome complexities, etc. She was so helpful! She could listen to me tell about the overwhelming, overlapping issues, check what my body was communicating, then help prioritize next steps based on her observations, what she knows of EDS. So, grateful that hips got another clear report and confirmed that I can still tell (usually) difference between joint pain and muscle compensation.
There is a lot going on. I have had numerous specialist appointments, more MRIs, other testing, still more to come. I have been given partial answers, but we are still working on sorting things out. I am desperately hoping we can get any additional testing that is needed done as soon as possible so we can proceed with next steps for treatment. I am trying so hard to find the positive, but the reality is that I am not doing well and do not feel well.
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