This is what the last 2 weeks of clinical rotations have looked like for me. Two weeks ago I flew from Massachusetts to Washington, DC to undergo a decompression of my right brachial plexus due to tight fibrous bands of scar tissue compressing nerves and resulting in weakness and dulled sensation in my right arm for 1.5+ years. This was likely a result of my shoulder instability secondary to having hypermobile type Ehlers-Danlos Syndrome (EDS). I had underlying shoulder instability secondary to having EDS that makes me more susceptible to scar tissue formation, as well as ligament and tendon tears. I also had fat transferred with Lipogem technology from my abdomen (yay lipo!) into my rotator cuff in my right shoulder as well as a tear in my labrum of my hip that was causing painful subluxations (partial dislocations) of my hip during normal walking motion and even while sleeping. 25cc of fat was also relocated around my right brachial plexus and along my jawline (hello double chin!) in an effort to prevent additional scar tissue from contracting down on my nerves again.
I woke up from surgery in the most pain I have ever been in post-operatively, and this is coming from someone with an extremely high tolerance for pain. Apparently, I wouldn’t even open my eyes because I was scrunching my face and entire body up in pain until they got post-op fentanyl on board. I feel like I can really empathize with some of my patients now! Because of my history of numerous surgeries and long term prescribed opioid use, I needed to be sent home with extended release morphine tablets at my Day 1 Post-Op appointment. Yep, MS Contin morphine! We definitely could have gone without the student health insurance fiasco of trying to fill medications. I mainly slept for the next week that I spent in a hotel in the Northern Virginia area, and often fell asleep in public during the few outings I did have.
For the first 5 days of my recovery I was ordered restricted weight bearing on my right hip. Normally, I would have been on crutches, but since we were doing multiple procedures at once, and since I would also need to be in a sling for 2-3 weeks after surgery, I needed to utilize a wheelchair during this time. This was an exception made simply because both my surgeon and my physical medicine doctor understood that I would have someone to care for me while utilizing a wheelchair, and that I was in clinical year of veterinary school and couldn’t rearrange my schedule twice to make multiple staged surgeries work.
Making this surgery happen was NOT easy and it certainly wasn’t “good timing.” The surgery was able to happen because many people moved mountains to make it work. My brother worked remote and lived in a hotel with me for my first week of recovery. My parents worked their butts off to make sure their business could still operate while one of them flew back with me to help me recover. I worked HARD with my school's clinical year coordinator (Nancy you're a godsend!) to rearrange my rotation schedule so that I had less physically demanding rotations in the weeks after my surgery, it wasn’t just luck that it ended up that way. I took two weeks of "vacation" from clinics for the surgery and 1.5 weeks of recovery. This week I am taking online electives through VetFolio, and next week I’ll return to campus for Clinical Pathology. Then, I will have a week with our Behavior department before diving into Large Animal Surgery.
My dad flew back with me to my apartment early last week to help care for me as I figured out navigating life in a wheelchair and a sling. Today, I'm no longer using a wheelchair and am currently walking normally with some mild pain/discomfort. I still intermittently using a sling with “feather weight” lifting restrictions in my right arm, and still cannot lift my arm above my head due to restricted shoulder ROM. I have had some pain that radiates to my shoulder when I take a deep breath, likely due to the extensive muscular dissection, and I still have skin sutures in both my clavicular and umbilical incisions but have been off of all opioids for about 4 days. My dad flies back to Virginia on Thursday and we've been putting me through tests to make sure I can take care of myself, drive on my own, etc. I start physical therapy this week and am looking forward to rebuilding strength. My surgeon reported excellent improvement in my post-decompression intra-op nerve stimulation, so we are very optimistic about potential recovery there. Unfortunately, I am still left with the same constant severe muscle spasms along my neck, traps, rhomboids, etc that I have been dealing with for the last 2 years since my fusion. While there is still a chance I may see mild improvement, it is likely I will need to develop an alternative plan to manage symptoms until I can find time to have another surgery. I'm also still coping with having multiple other chronic illnesses on top of getting back to caring for myself independently.
If there is one thing I wish people understood about life with EDS, is that everything is about management. I will never live a life free of pain, but I may be able to manage it to someday get it below a daily 3/10. I will likely have many more surgeries and procedures for the rest of my life. As my surgeon and I agreed, I’ll be his patient until he retires and someone else takes over. That’s just the reality of living with EDS. There will likely always be something new going on with me medically, and it will likely never stop. This is my life and I have to learn how to work my chronic illness into my life rather than delaying my life because of it.
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