8 Months: Positively Discouraged

I am eight months post-op second (right) hip. There has been encouraging progress in the past month. I am also feeling really discouraged. However, the discouragement is not really even related to the right hip, but rather compensation issues as we continue to work through trying to rehab my body from numerous issues simultaneously. Is it possible to be positively discouraged? Grateful for what is going well, but feeling discouraged about the numerous challenges at the same time? I did not even start writing this post until the day before the 8-month post-op mark for my right hip. Hips have been doing well for the most part. Neither hip is what I would consider 100% recovered yet. However, in the past month, I have noticed I am not favoring either hip, and I am returning to more normal methods of getting dressed, doing daily tasks. Both hips can still get sore and be prone to flares at times, but pretty much back to "normal" pre-hip issues ability and had even been discussing with PT a couple of weeks ago trying to run. However, as the cortisone injection for left shoulder has apparently fully lost effect, shoulder is becoming more limiting globally and is flaring up neck, back, left hip (20+ months post-op).

The positive--right hip is doing really well! I am rapidly regaining range of motion, strength, ability. I was back to pre-hip issues ability with exception of what shoulder is interfering with. Thus, need to shift perspective. This is not an isolated hip issue at this stage but a more global compensation issue surrounding shoulder and neck issue that needs sorted out to allow progress with hips and with continued healing from the other injuries.

I can walk outside back to pace, duration I was doing years ago! I can do elliptical at faster pace, longer duration than I was doing between hip scopes. I was swimming at former pace and duration....briefly, before shoulder injection started to lose effect.

After a walk outside! Yes, shoulder is taped.

Elliptical a few days ago after already walking outside.

Sitting criss cross--more comfortable, better ROM.

Kinesiology tape: helps support my shoulder.

Taped shoulder, but also bony prominence showing due to atrophy.

Unintended things also shown in this photo: how flexible I am without trying, old scar on arm from past surgery, posture of dejection which totally fits with current discouragement, even though this photo was taken over a week ago and was just the position that worked to show tape and bony area.

Showing atrophy more clearly with tape off.

One of the outcomes of the various conversations with hip surgeon, PT, etc. a month ago had been the general consensus that my left shoulder needed a third opinion before making any decisions. I saw the third surgeon a few days ago. He was familiar with Ehlers-Danlos syndrome and hypermobility and how that affects (complicates) things. He checked my shoulder, asked my perspective/history of things. He recommended against surgery. On one hand, I was relieved when he recommended against surgery. On the other, I was disappointed as he agrees I have exhausted nonsurgical approaches, he agrees I am struggling, but had no new suggestions for managing things. He recommended taking a break from swimming and shoulder PT to see if a break would help calm it down. However, we have done this multiple times in the past, had been trying to work on increasing swimming as that is how we managed best in the past.

I had the shoulder taped again just hours after the orthopedic appointment. I had removed the tape a few days in advance to let the shoulder go back to true reality as much as possible, but without me suffering more than strictly necessary.

I felt (still feel) pretty discouraged and disappointed. Not for a recommendation against surgery, but for total lack of any hope from the appointment. I had gone into the appointment keeping expectations low and honestly no preconceived ideas of what I wanted in terms of surgery recommendation. All I was looking/hoping for was being listened to--I was, and some glimmer of hope moving forward--this did not happen. I was not outright dismissed, which I am very grateful for. However, it did feel like the underlying medical issues were used a bit as an excuse.

I had hoped to get a brief perspective from PT how to proceed with rehab until my next appointment, but did not hear back before the weekend, so sort of making things up as I go for now as uncertain what to do or not do with rehab as exercises for neck, back, and hips all use shoulders. Thus, it is not as easy as just stopping shoulder PT, but continuing with PT for everything else. It all interconnects. This was actually a point that I do not think was truly addressed by the surgeon--he acknowledged neck/shoulder could be and probably were keeping each other flared. However, did not take into account role of shoulder on flaring up back and left hip. So, hip rehab has been stalling out due to shoulder, now we are backing down shoulder....but not sure how to proceed. I took a total rest day--I did not feel well as weather had changed, not been able to swim as normal routine, had planned to try some PT exercises, but then opted to wait until I heard back from PT, so never did any.

Over the weekend, I did try to work through some of my home exercises, see what I could do that was not using the shoulders at all, or using them minimally. The colder weather is not helping--both from flaring things up and from lack of ability to walk outside.

Quite honestly, I am still actively rehabbing both hips, not only the right hip.  My right hip seems to be doing better than my left hip in some ways, but not as well in others. It was at 8 months post-op left hip I was finally optimistic about left. However, that post also addresses some of my ongoing nagging concern--how much of some of these issues are compensation issues, and until we do get sustained plan for shoulder, fighting a losing battle. Right shoulder has been giving twinges again the past couple of weeks in spite of being super careful. At a loss. But, still refusing to give up. Regrouping....

I am grateful for great medical care from a team who support me, have my best long term interests in mind. I need to continue to choose to remember my recovery theme: this is not a race to see how fast I can recover, but a journey to see how well I can recover. This motto applies to life with all of the chronic illnesses. It is worth taking the time to let my body heal at its own pace.

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