It has been quite awhile since a post and has definitely been a crazy and unexpected year. 2013 started off with a left shoulder scope for me. My capsule was so loose you could nearly pull my arm out of the socket. I had over 8 sutures put into my shoulder capsule to get back some stability. I spent over 6 weeks in a sling and recovered with very good results. My left shoulder has felt more stable and "normal" than it has in a very long time. In January, I also had an appointment with the genetics clinic at Cincinnati Children's Hospital. It is one of the largest connective tissue disorder clinics seeing 800-900 patients per year.http://www.cincinnatichildrens.org/service/c/connective-tissue/default/
I spoke with a geneticist about my EDS and different treatment options. I was referred to a specialist who treats TMJ syndrome in EDS. I post-poned seeing the TMJ specialist because after my shoulder was repaired and more stable, my neck and jaw were not nearly as irritated and requiring immediate attention. The geneticist also explained that my EDS was more severe than originally thought as well as I displayed certain crossover signs of Hypermobile EDS.
I started out the year thinking I would immediately have my left hip surgery and was in contact with Dr. Millis to begin the planning process for a combined FO and scope, but after a lot of contemplating I decided to hold off on surgery on my hips. I went forward with the shoulder because I began waking up with more and more dislocations. After discussing my options with my local OS I decided to post-pone any hip surgeries till I could max out my physical progress and strength. I eased back into running and training and by June was running about 3.5 miles per workout and up to a dozen miles a week. I even did a practice PT test and ran a 2 mile in under 18 minutes. I was also granted a waiver to stay in the Army with a profile that gave me an alternative cardio event for the PT test as a compromise and to help protect the surgeries to my legs, but also developing further injuries. I would be deployable, but just have an alternate APFT event. It was years of surgeries and rehab, but I was finally back to an active training status.
Late June would change my physical status. I developed a small area of skin breakdown from running and training, but nothing I had not dealt with because of EDS. I kept the area dry, clean and protected, but despite all attempts I developed an infection. I went to the ER after a work shift and seeing that the area had doubled in size knew that I couldn't wait. I explained my health issues and that I didn't heal, but despite my efforts was sent home with some antiseptic and antibiotics. I followed up with my family doc 2 days later and by then the infection had doubled in size yet again. An additional antibiotic was added, but the infection worsened over night and I was admitted to the hospital the following day for IV antibiotics and painkillers. I was on IV Vancomycin and Zosyn for a staph aureus and serratia. I was inpatient for 3 days and then released with another round of oral antibiotics. The wound healed and all seemed okay.
I went to my follow-up appointments and noticed more sensitivity and pain in my hip and femur where I had remaining hardware from my femoral revision. Dr. Millis and my local OS, Dr. Dierckman, decided that it would be better to take out the hardware in case the infection had seeded the hardware. The hardware removal was done locally on July 1st and should have been an overnight stay, but because of my RSD I developed a very bad flare and we were not able to control pain, so ended up being inpatient for 6 days with a ketamine infusion to treat the RSD. Between the first hospitalization and the surgery, summer courses had commenced and I had started my physio lecture and lab. Being in the hospital made making up work difficult, but I had managed. I woke up on a Saturday, 2 weeks post-op, and I was very swollen and had an excruciating pain. My incision looked great, so I thought I had somehow fractured my leg walking around. I was in so much pain, so I made my way back to the ER. I had a slight fever, a HR of 130 and an elevated white count. I was immediately admitted and further tests were run. I had a CT scan and hip aspiration which all came back that I had a relapse of serratia. Surgery was done the following morning. Unlike my other surgeries, it was the only one in where I did not have family or friends there, so it made the experience a little more nerve-racking. My parents where in Chicago because my mom was flying out to spend time with a new grand baby. Fortunately, my doc had my back and was doing this surgery so I knew I would be taken care of. He found that the infection was not superficial at all and the pockets of infection were quite extensive and all of the way down to the bone. He was able to clean out all of the infection and narcotic tissue, but I also ended up losing muscle tissue, making my right leg even more weak from all the surgery. I was finally on the mend. It was another week in the hospital and I left with a PICC line in my arm and IV antibiotics at home. Unfortunately, I only spent a few days at home until I was back in the hospital. Although I was not allergic to the antibiotic I had developed the severe side effects including severe dehydration and nausea that effected my potassium levels. I was re-hydrated, given nausea meds so I could eat and drink and the antibiotic was changed to one that we knew worked while I was inpatient. I ended up spending nearly all of July in the hospital.
The infection and complications made it impossible to complete my summer courses, so I withdrew and re-registered for the fall. I was even approved for a fee appeal for my summer tuition and expenses. The fall started off well, but ended up with quite a nasty cold mid-October, then ended up spending time in Boston to follow-up with Dr. Millis. It was great seeing him! I told him that I was pursuing PA school and he told me that I should choose ortho as a specialty and come work for him!!! It was such a huge compliment from someone I admire and respect. We also discussed the plan to fix my left hip. After the infections and summer in the hospital I ended up severely subluxing my left hip and it never recovered to the point I could return to training. We put the FO back on the table with or without scope, scope first, etc. We wanted to return to the idea of a scope in hopes that it may be enough to avoid an FO. Unfortunately, the type of instability and issues of my left hip where not well understood or had a clear treatment protocol. It would be quite experimental. I returned to my local ortho and we have decided on a hip scope with labral repair, cam resection, IT band release/bursectomy and open capsular plication. Dierckman specializes in hip arthroscopy, but the open capsular plication would be new for him. I am okay with him trying this out on me because I know he is familiar with my EDS and medical issues and what works best for me. Hip capsular plication can be done arthroscopically, but very few docs can do it. When it is done it is usually a few sutures and we know that it would not be enough for the type of stability I would need which is why we decided on the open procedure for the capsular plication.
I also will need my right shoulder reconstructed. It is beyond the point it can compensate and is actually worse than my left was prior to its repair in January. I had no labral tears in my left shoulder, but have extensive labral damage in my right shoulder. Between my left hip and right shoulder it has made sleeping and pain control near impossible over the last few weeks. For that reason, I will be having the hip surgery as soon as possible and the shoulder 6-8 weeks after that. It will conclude my year with 5 surgeries this year and 14 overall surgeries. Because of needing the surgeries and not enough time over Christmas break to do both surgeries because the hip surgery requires a brace, limited ROM and a month on crutches the two surgeries have to be spaced out. It will also make completing my fall courses near impossible. I am working with my professors on taking a W for the fall and starting over, again, in the spring semester. It is not my ideal situation, but both surgeries are desperately needed so this is what has to be done. I will keep trying and keep pushing toward my goals.
*Update: I ended 2013 with a total of 6 surgeries due to a superficial infection after my left hip surgery that required tweaking. It was a long year with 6 surgeries and 4 different hospitalizations. And in true fashion, the last surgery of the year was my right shoulder reconstruction that took place on Dec. 31st.
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