Real World: My Hips Suck ~ Living with Ehlers Danlos Syndrome

As I mentioned in my previous post, I had an appointment last week with my surgeon. He did a quick post-op check of my incisions (shoulder = looks good, leg= may need antibiotics) and then we focused on my hips.

Basically my hips suck. I've got very painful and bad (as in noticeable) snapping hip on both sides and a labral tear and FAI in the right hip. At this point the only options for me are surgery. Of course my surgeon checked for the snapping hip (to make sure he could replicate it) and it was very obvious.

Snapping hip surgery can be done in two ways: removing bone and tendon release. With snapping hip, the tendon is extremely tight and the "release" is actually more of an "opening." The tendon itself will not actually be lengthened, but rather "opened" to allow for more fluid motions (basically it won't get stuck). The bone work procedure is one that my surgeon said is a possibility but he would prefer to stay away from it. This procedure would involve removing a piece of the great trochanter. The concern is that removing a portion of the bone, and a bone that serves A LOT of purpose with many different tendons and muscles attached to it, cannot be repaired if necessary. The "release" or "opening" can always be closed back up if need be (although that won't be necessary). Fortunately, he has another EDS patient who has undergone this surgery successfully and he feels it will dramatically help with my pain.

The right hip needs a bit more work. As I mentioned, I have a labral tear and FAI (impingement), as well as the snapping hip. The plan is to scope the right side, repair the tear, shave down some impingement and "release" the tendon. Originally I was planning on having the right hip done in December, but lately the left hip has been worse and I am considering switching. Either way, one hip will be done in December and one next summer.

I am 3 weeks post-op from right reconstructive shoulder surgery. The pain has gotten better, although sleeping is still difficult. I have 3 more weeks in a pillow sling. I start PT in 3 weeks--which will be another very SLOW process. Fortunately I have an awesome therapist and we have been through this recovery together before.

My trip to Boston with Marena and her family was amazing. For the first time in the MANY times we have been to Boston for surgeries and appointments, I was able to experience the city. If you don't already know, Boston is my FAVORITE place. There are so many amazing things to do. We went on the Boston Duck Boats (something I have always wanted to do) and on a Ghosts and Gravestones Tour of the cemeteries in the city. It was so much fun. I also really enjoyed staying in the North End--such a cultured environment with so much history. I was also fortunate enough to have been standing next to Brad Marchand of the Boston Bruins (however, unexpectedly). He was staying at my hotel and we made eye contact in the breakfast line as he attempted to stay unrecognized. Fortunately for him, I was star struck...but Bruins players certainly don't go unnoticed by me.

Thank you so much to the Ranieli's for everything! I am very appreciative.

Here are some photos from our trip...