Blog Post #1 My Story

My journey with Pain, Numbness, and Discomfort

Pain was no stranger to me. I have no memory of not having pain in my upper back as a child. I never thought about it as pain because it was all I had ever known. I thought this pain was normal, at least I did until much later in life. When I was 18 and a driven college freshman in music school studying horn and music education, the pain in my upper back intensified and traveled down my arms. My hands felt unusually tired or weak all of the time but, I said to myself, “no pain, no gain” and I pushed harder. Again, I thought this was normal until I started losing feeling in my hands (both the ulnar and medial nerve sides) so I went to the reputable physical therapy (PT) department on my college campus. They tried all kinds of strengthening and therapeutic approaches but I was not improving. When you have an invisible disability some people actually question your claims and credibility. When I described the intensity of my pain to the head of the PT department he said that I seemed stressed and that I should “go for a run”. He clearly insinuated that my symptoms were in my head. I felt so betrayed and confused. Around that time I was carrying a large stack of books to my dorm room when I felt both of my hands/arms suddenly become completely numb, weak, and then my back went into spasm. 

The intensity of my discomfort and pain was extreme. In my vulnerable state I thought it was because I was not talented-I doubted myself on every level and felt worthless. I called my mother crying and she told me to see a doctor-I was worried about the cost because I had no money but she said she could add me to her insurance. I was incredibly lucky to find an orthopedic doctor who was able to give me an initial diagnosis which he said was Thoracic Outlet Syndrome (TOS) due, in part, to an extra cervical rib. He pointed out how my shoulders dragged down with weight and had compressed the thoracic inlet area. This drag or compression was caused by holding my horn, heavy bags and books using poor posture combined with hypermobility or joint laxity. He also said that I had carpal tunnel syndrome (CTS), severe tendinitis, and a sublexing ulnar nerve on the right side. 

The doctor told me that I should pick another major, something other than music and performance, but this was not possible because I was on a full talent scholarship and I had no other means to pay for my education.

The PT was given a doctor’s prescription on how to treat me and I felt somewhat vindicated at having paperwork and x-rays indicating a real diagnosis. I felt like I had a little more of my power/optimism back that I tried to use toward getting better. I used some of my loan money to see a naturopathic doctor who gave me herbs that made me sicker. I love naturopathic doctors but not for the TOS diagnosis. I saw a chiropractor who seemed to help lessen the pain, numbness and muscle spasms for a day or two but it always came back. Seeking out help in the beginning gave me some hope even when nothing felt entirely successful. Finally, after 10 months of physical therapy, I resorted to one carpal tunnel release surgery. I had to see three doctors before anyone would help me, they said I was “too young for CTS and that TOS was not a real diagnosis”. I chose to ignore those doctors. The CTS surgery helped the chronic numbness on the right medial nerve but did not help the weakness and chronic pain or the numbness on the pinky side of hand. The recovery after the surgery was painful and I immediately regretted having had it. I began to resign myself to a life of chronic pain and, against the doctor’s advice, I refused surgery on my left hand. I couldn’t type, turn a door handle, play horn, piano (or any instrument), lift weights, swim, do yoga, run, or even sleep without pain/numbness. My friends carried my bags for me, I was limited in what I could do but managed to get through college with support from my peers and the college faculty. Getting through my undergraduate years was the hardest thing I have ever done. After graduating from college I got a great job teaching, conducting, and doing some performing oversees. The pain continued, I still struggled to perform, write reports for my students and with everyday life activities but I had a salary so I saw every type of practitioner I could find. I saw an osteopath, acupuncturist, shiatsu masseur, sensitive masseuse, dietician, and even a healer. No one at that time had heard of TOS so I stopped mentioning it and I stopped identifying with the diagnosis. Everything helped a little but my issues always seemed to come back. Next, I read a dated Alexander technique (AT) book that explained the concepts of AT. I went to an introductory class to learn more about the technique and how I could improve my posture and the ways I used my body. It was interesting because it introduced me to learning how to use my body differently. I learned that we can become more aware and change the way we move and breathe in the world. The more I did this the more I started to undo chronic patterns of tension taking lessons and using the technique’s concepts. From all of the modalities I had studied and tried I was starting to see a domino effect that when the pain in my back (sitting, working, playing etc) would intensify it was only then that my arms, neck and hands started to cause me more trouble. If I used my hands too much, my neck and back would hurt. If I turned my head quickly I would get a shock on the right side of my neck. 

Eight or nine years after my initial diagnosis I started taking AT lessons. I only took one lesson every two weeks but I mysteriously started to feel better after my lessons. I learned how to sit, stand, do computer work and hold my instrument with less stress in my body. My pain lessened significantly and the positive effects of a lesson lasted much longer than the other modalities. This did not happen overnight but it happened. After I successfully graduated with a MM in horn performance I continued lessons every few months, I was seeing big improvement and felt I wanted more. I trained as an AT teacher and within two-three months I felt what I had been waiting for. The dreadful pain in my upper back was gone!!! It was the first time in my life I knew what it was like to not have constant pain in my right shoulder. It was one of the best moments of my life-I felt free and thought, “this is what everyone else probably feels like-normal and without pain”. That was nearly twenty years ago and today and pain or numbness, if it happens today is rare and very short lived. I still need to be aware of my use working out, practicing, and finding the right combo and balance of activity and muscle tone but I can do pretty much anything I want now.

 I realize AT might not be for everyone but, for me, it changed my life, the quality of my life, improved my performance, breathing, anxiety, and taught me so much about my brain-body connection. It also gave me the skills, experiences, and arsenal of tools I needed to address my pain, tension, and performing issues if they arise. I am hoping this book will do the same for you. 

Blog Post #2 Bad Knees?!

In my journey through life, the well-being of my knees has always been a challenge (until my late 30s-40s). The story begins in my childhood, where I was labeled as "pigeon-toed," a condition now recognized as "in-toed." This unique trait, combined with my inherent hypermobility, led me to adopt certain postures and movements that unknowingly contributed to the early development of knee issues. I vividly remember sitting on the floor in the classic "W" posture, as it was the only position that felt comfortable. Little did I know that this seemingly harmless posture could potentially have adverse effects on my knees and hips. While modern research suggests otherwise, my personal experience seems to align more with the traditional concerns surrounding the "W" sitting position.

The first signs of trouble emerged when I turned 12, as I began to experience discomfort and pain in my knees. These issues hindered my participation in activities like running and soccer, prompting a visit to the doctor. Their diagnosis was disheartening; I was advised to steer clear of sports, with a somber prediction that I might require knee replacements in my 20s. However, I chose not to heed these warnings, continuing to engage in sports with unwavering determination. What many people are unaware of is that I have tilted knee caps, causing my knees to "track" at a diagonal angle, gradually wearing away the precious cartilage. Furthermore, for most of my life, I unwittingly stood with my knees hyperextended. While well-meaning individuals occasionally cautioned me against hyperextension, it meant little to me, as this stance was my default mode of support. Alternatives felt either "wrong" or remarkably unstable, and I remained oblivious to the existence of other options.

My journey took a particularly challenging turn when I attempted to join a casual game of soccer at the age of 21. The abrupt starts and stops on the field left me feeling crippled for several weeks. Nevertheless, I persevered, eventually regaining the ability to walk without a limp, and resumed my routine of jogging and walking. At that point, I had resigned myself to the belief that playing soccer was no longer feasible.

A pivotal moment occurred when I was around 25 or 26 years old. After completing a half marathon, I decided to go for a bike ride the following day and experienced an odd sensation. To my shock, it felt as though there was a disconnect under my knee; my lower leg and knee seemed incapable of supporting my average body weight. After enduring several weeks of immobility, I finally sought help from an orthopedist who recommended surgery with a potential 85% success rate.

After reflecting on my previous surgical experience (as discussed in my earlier post), I concluded that it was not the right path for me. Instead, I chose to forgo surgery, and today, my original knees are functioning remarkably well. Approaching 50, I recently completed a 6.8-mile run with no issues whatsoever.

My knee journey has been marked by numerous challenges and uncertainties, all influenced by the distinctive characteristics of my knees, my postural habits from childhood, and my unwavering determination to defy medical expectations. This narrative is just the beginning of my story, and I eagerly anticipate sharing more about my experiences and the valuable lessons I've gained along this extraordinary journey.

Blog Post #3 Creepy Crepitus Sounding Knees

I've learned a few important things about taking care of my knees. First, they perform best when they are in proper alignment. Second, I should avoid excessively gripping my thighs, whether it's the inner or outer parts. And third, if I ever experience discomfort or a twinge while running or engaging in any activity, it's crucial to pause for a moment and assess my overall posture and movement to identify any contributing factors.

In my late 30s or early 40s, I noticed my knees started producing crepitus sounds, reminiscent of crinkling trash bags, especially when I walked up and down stairs. These sounds made me anxious. I wondered if I was depleting my cartilage or worsening my knees by running. In an attempt to address this, I switched to swimming for a year, but the crepitus sounds persisted, although they weren't accompanied by pain. This led me to delve deeper into investigating and reflecting on my condition.

It's important to understand that joint noises can occur in both healthy and not-so-healthy joints. While they can be associated with conditions like osteoarthritis, these sounds are not inherently harmful. The primary concern is the fear they provoke, which can lead to reduced physical activity and less impactful exercise, ironically potentially causing more harm in the long run. In essence, the fear of joint noises is the true issue here.

Regular exercise and proper joint usage can strengthen cartilage, but it's crucial to pay attention to your form and technique during exercises. If you experience pain or tension, it's a sign that something is out of alignment. Instead of quitting the activity altogether, consider modifying it by adjusting intensity, speed, duration, or direction. Such symptoms could also indicate surrounding muscle tightness, contributing to snapping sounds during movement.

For more insights and research on the significance of joint noises, you can refer to articles such as those from NY Times if you're a runner or walker. Or, check out this informative articleT These articles resonated with my personal experience, as if they were reading my thoughts. I'm now approaching 50, and I continue to run 3-4 days a week, covering distances ranging from 2.8 to 6 miles in each run.

If joint sounds persist and don't feel right, it's advisable to consult a doctor and then consider seeking guidance from an Alexander technique (AT) instructor for personalized advice in understanding and addressing the issue.

In summary, don't let joint noises discourage you from staying active. However, always use common sense if something doesn't feel right. Stay attuned to your body's signals, release any fear, and prioritize maintaining joint health by paying attention to how you use your body.

Blog Post #4 My Journey with Thoracic Outlet Syndrome (TOS) Diagnosis

In my first blog post I shared the story of my diagnosis with Thoracic Outlet Syndrome (TOS) at the age of 19 in 1993. Most people have never even heard of it, I certainly had not. At that time, information about this condition was scarce, and many medical professionals dismissed it altogether. Fortunately, I crossed paths with an exceptional BIPOC orthopedic surgeon who took my symptoms seriously and conducted thorough tests.

During the examination, the surgeon carefully listened to my complaints and conducted X-rays while I held heavy containers filled with sand—a painful experience that remains vivid in my memory. Tears streamed down my face from the nerve pain and spasms in my shoulders and back while the scans were done. (I don't think they do this test anymore.) The purpose of the test was to identify any upper shoulder compression that could explain my frequent loss of sensation in my arms and difficulty carrying objects (and my instrument). The results revealed an "extra rib" or unilateral cervical rib on my right side, as well as subluxation of my humerus bones bilaterally, confirming hypermobility syndrome. The X-ray above is not mine but is was the clearest picture I could find to show what the cervical rib looks like. For those of you who are not familiar with anatomy, we aren’t “supposed” to have ribs growing off of the cervical spine! Why are they there? No idea! I refer to my extra rib as Adam. (Yes, bad biblical joke)

Additionally, to further confirm the diagnosis of TOS on me, they performed the Adson's test which involved the external rotation and abduction of my arm while turning my head. I was held in this position until they could no longer detect a pulse. The lack of pulse was part of the confirmation of TOS. Don’t worry, I wasn’t having an NDE although eveything they did to me felt very painful to me. TOS symptoms can be extremely painful and, in certain cases, life threatening.

As the medical team conducted the Adson's test, I couldn't help but feel like a spectacle, surrounded by curious PT students observing my unique condition. Despite the initial relief of finally having a diagnosis, I soon realized that my journey with chronic pain was just beginning.

While commonly referred to as Thoracic Outlet Syndrome (TOS), the anatomical area it actually pertains to is the thoracic inlet, situated in the lower neck between the chest and armpit. This region encompasses a complex network of blood vessels, nerves, muscles, including the subclavian vein, subclavian artery, and brachial plexus. Compression in this area, induced by factors such as posture, instrument playing, computer use, or trauma, can lead to a variety of symptoms. Presently, TOS is categorized into various subsets, among which is nTOS (neurogenic TOS), the most prevalent form accounting for over 90% of diagnoses. Additionally, there are less common variants such as vTOS (venous TOS) affecting approximately 3-7% of cases, characterized by compression of the subclavian vein, and aTOS (arterial TOS), marked by compression of the subclavian artery between the collarbones and ribs. (see pictures and video below)

I once encountered a client with AT (Arterial TOS) who, prior to seeking sessions, experienced a ruptured blood vessel due to pressure in the thoracic inlet. This critical situation necessitated immediate surgery, during which his first rib was removed to alleviate the life-threatening condition. Although the surgery addressed the immediate danger, it failed to alleviate the persistent pressure and pain. Like myself, he turned to the Alexander Technique for relief. Through focused attention on posture and self-use, his symptoms gradually improved, enabling him to resume a normal life.

Additionally, I've had the opportunity to work with two violinists diagnosed with TOS, who primarily suffered from severe shoulder pain located between the scapula and neck. Through the practice of the Alexander Technique, they underwent postural and breathing reeducation, learning to utilize their bodies in ways that mitigated pressure in the thoracic region. This approach facilitated significant improvement in their symptoms and allowed them to continue their musical pursuits with greater comfort and ease.

In my personal and professional experience the Alexander technique, with the right teacher/practitioner and the inclusion of breath work, is the most effective treatment for TOS. I have tried it all!!