things are starting to make a bit more sense... I think
Oh, where to begin.... Well, I guess it's easiest to start at the beginning of the lockdown. Yep, remember when we all had to stay trapped in our houses to not get covid? Well, for a young adult suffering from chronic pain, this made me stir crazy. Especially one who was a closeted stoner. Yes, I had classes online which kept me distracted for a bit but after that, all I could do was sit around watching tv in pain. My dad has always been the kind of person to not fall into a lazy pattern, and he tends to project this onto the rest of the family. So, our mental health breaks during lockdown consisted of many walks around our local park trails. These were nice but, still very hard to keep up with. After all, it was my only chance to have some semblance of privacy to smoke if I stayed home rather than joining them night after night. It was becoming harder and harder to manage my pain with every member of my family, especially my little sister at home 24/7.
So, I decided to start a little "workout" routine for myself. It consisted of many many therapy exercises for my neck, shoulder, and abs. Before leaving Redlands and Loma Linda, Clayton (my PT) suggested that I get the rest of me as strong as possible before possibly needing another procedure done. Unlike my other pain symptoms, my new ones were harder to link to a diagnosis and a plan of "attack". It gave me time to focus on my relationship with my body. Due to my lack of energy (to push through the pain ) after a full day of classes working out was just not possible. Not to mention, I didn't have a stationary bike, the only way I could endure cardio, at my parents' home. So, I decided I would buy myself a bike. It would be my time to go outside (safely), get in some cardio, and smoke as much as I needed. Regular classes would be over soon and May Term wouldn't be too hard, especially online. But, since I would still need to be able to type, I wasn't able to bike as much as I wanted. Instead, I had to focus on strengthening my core, something that did not increase my inflammation as much as cardio. For this, I bought a yoga ball to help release the pressure on my neck and cervical spine. I would let my spine decompress and would wait until the spazzing in my shoulder and mid-back subsided so I could do some modified crunches. The living room of my parents' house became my physical therapy setup. My bands were tied to the doorknob to do my shoulder and elbow exercises, right across from the mirror displayed on the dining room wall so I could catch myself engaging the incorrect muscles. This was something that Clayton wanted me to continue working on while I was home over the summer. So, I took it to heart and got to work.
When ALL classes were finally done, the lockdown actually wasn't too terrible, at first. I would wake'n bake, do some yoga/stretching, and then if I felt up for it a bike ride. Since I wasn't in school anymore, my body had the ability the fully shut down for two weeks. When it came back to life, I felt rejuvenated. Going on different trails at the park near my parent's house became my time for privacy. Yes, privacy to smoke but also just for some plain old privacy haha. Lockdown meant being at home with my whole family day in and day out. Even the weekly doctor's appointments became exciting. Leaving the house for appointments was one of the few "essential" reasons that allowed for a person to "break lockdown". I continued with PT at Stanford with a therapist who was knowledgeable about thoracic outlet syndrome. Our main focus was to manually massage out knots in my neck, shoulders, and upper traps. With this, the hope was that my posture would also improve, hopefully relieving any further tension on my cervical spine. My next step was to see a surgeon whom Dr. Kamal referred me to and man was I intrigued. I would finally get my answer to my pain.
I met with Dr. Lee on May 27, 2020. The first thing I had to do was go through an extensive covid screening because remember the world was terrified of contracting coronavirus. I was too, due to my asthma and inflammation issues already, getting sick would make everything ten times worse. So, I never complained about masking up, testing, and social distancing. Well, once I was cleared I entered the main hospital building and took the elevator to the vascular center. I had to undergo an arterial duplex before meeting Dr. Lee. This was a new test for me. It began with the nurse patching me up with sensors. These are called PPG sensors which detect volumetric changes in blood in the peripheral circulation. They had me lie down initially to do an arterial duplex ultrasound, which uses sound waves to create a color map of the arteries in my arms to identify the narrowing of vessels. The sound was actually very pleasant. It was easy to hear the differences when the ultrasound inched along both arms, allowing me to compare and analyze on my own. The next step was for me to stand up and hold my arms in various positions. They specifically asked me to do movements that made my pain spike, aka the nerve tingles feeling more sensitive. This part had no sound. The technician simply looked at the screen that showed the various wavelengths of blood flow restriction. Then, I had to do a chest x-ray. All these tests would be discussed in my appointment shortly... I was both nervous and excited to get some answers. I wanted this to be the answer, to feel some relief... I thought I was going crazy thinking that something was wrong.. that something deeper... meaning something structurally wrong.
And there it was, my confirmation... neurogenic thoracic outlet syndrome. OH, and my x-ray?
I unfortunately never received a copy of it, but he did inform me that it indeed showed a deformed first rib. Essentially instead of it facing and curving outward the way it should, my rib was flipped up and the curve rested right on top of my trap. He explained to me that he believed the rib was putting pressure on the nerve center in my shoulder, aka the brachial plexus. My head was spinning. I knew there was a slight chance that this would be the reason for my pain but you don't expect to learn about a deformed rib before your 21st birthday... How did this go unnoticed & undiagnosed for so long? He then told me that the initial injury of my full body weight and momentum on my wrist and shoulder... could have caused some real damage to my brachial plexus. Add that plus the deformed rib that had already been putting pressure there, and you get the perfect recipe for disaster.
Everything started to make more and more sense... The rotator cuff tendinitis that I had at age 12... the dislocations that occurred while playing basketball... All this points to a structural abnormality. But, how the hell was any doctor expected to piece all that together? Luckily, Dr. Lee did this... but man would have been nice to know sooner rather than later. Maybe I wouldn't have played both basketball and softball at the same time growing up. Even playing soccer, I was a goalie because I had the best hand-eye coordination to block kicks... but I was also able to throw the ball with accuracy to open teammates. All of those things made my rib pressure increase at a rapid rate. A perfect recipe for neuropathic and muscular chronic pain. My next decision would big a big one... Do I have yet another invasive surgery? I was very nervous... this surgery felt scarier than the others.. Maybe because instead of just "fixing" something, it would be removing it. Dr. Lee felt my anxiety spike mid-appointment. I think by the look on my face he finally said, "okay, we do not have to decide anything right now. I'll put you in contact with another TOS patient athlete to ask as many questions about the procedure and the recovery. After speaking with her and your parents, let me know if you have more questions."
Kaitlyn was the patient I was put in contact with. She was a student-athlete in her junior year of college, same as me... this immediately made me feel more comfortable talking. We agreed to facetime since typing and texting were very painful for both of us. Kaitlin was a rower for Stanford in hopes of achieving her goal of participating in the Olympics. Prior to the pandemic hitting, she was actually eligible to play in the Tokyo 2020 games, but you know how that went.. the whole world shut down! Unlike me, she experienced pain on both sides of her neck and had tingles/blood loss down both arms. So, she was going to have both sides down about a month apart. She shared with me that she too had spoken to a baseball player at Stanford who had undergone the same surgery two weeks earlier. He had explained the feeling post-surgery in extreme detail. We were both very grateful for this since Dr. Lee did not mention some vital bits of information. Yes, my rib was going to be resected... but how much? from what angle? Kaitlin began by saying, "okay the only thing he told me that freaked me out was that he woke up with a drain tube and sac filtering out fluid and blood from the lungs. They might even have to collapse a lung during surgery" We both squirmed at the idea of waking up with a tube... I asked her "how long does the tube drain need to be in there?" "Only 24 hours", she said. We continued talking about our similar pain experiences... rotator cuff tendinitis at a young age... the clicking and popping with shoulder pain...and with a wish of good luck to Kaitlin, we hung up. She reached out two weeks later with a picture of her with a thumbs-up post-surgery while in the hospital. She then called and said, "well you can definitely feel the clicking of the tube collecting fluid... and you feel like you got hit by a train.. but no nerve pain down my arm!" I was relieved to hear that her surgery went well and that her pain could be managed by the nurses post-surgery. "The only downside is I am alone in the hospital throughout the whole process. With the pandemic, no visitors are allowed, especially overnight. So bring your laptop and headphones for movie distractions... sleeping was a bit hard." Crap. Alone for surgery? This made me a bit nervous but I had to remind myself that it was only one night. Mom and Cal would pick me up as soon as they could the next morning..... maybe I could do this. Maybe this is the best option for me to hopefully lead a pain-free, more "normal" life. Surgery #4 was going to happen, even if my parents did express major concern over such an invasive surgery... but at the end of the day, they trusted me to know what was best for my future. I knew in my gut that something else, something deeper was wrong, and alas I was right. I had to fully trust that voice inside me saying "keep fighting against the pain".
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