Hi everyone! I’ll start by saying that over the last 19 months this website has been an incredible resource, and I appreciate everyone’s candid posts and responses. My hope in contributing my experience is that others can benefit from the information in the same way I have.
My journey, like others on this forum, started with multiple ENTs having no idea what my problem was. Original symptoms starting in October 2018 were feeling of strangulation, dysphagia, loss of voice, foreign object syndrome. I was treated for anxiety (even though prior to this experience I have never had anxiety), acid reflux, thrush, actinomyces (weird), you name it… I tried every regimen, including vocal therapy. A (likely unnecessary) bilateral tonsillectomy was performed in February 2019, and all of my symptoms returned 10 days post-op. That said, some symptoms went away, and others evolved or new ones appeared. My voice returned, and the strangulation sensation subsided, but a specific area of pain emerged on the right side of my throat, which in July 2019 was identified as a styloid process pushing through the back of my throat.
Current symptoms include:
- Pain at point of contact in throat with styloid process when I inhale (breath hurts, similar to a sensitive tooth).
- Occasional trouble swallowing
- Occasional incidents when my heart starts racing (some resulting a trip to the ER). Some doctors tell me it’s anxiety, but I don’t feel anxious leading up to the incidents, so I have no idea. I purchased an Apple watch to track these incidents.
- Pain along right side of neck
- Severe Pain and cracking of cervical spine when I inhale.
- Severe Pain and and “crunching” at base of skull when I move head.
- Recent onset of chest pain (feels like referral from nerves in throat, but can’t tell for sure).
- Severe Pain and popping in shoulders and upper back/thoracic spine.
- Trouble holding head and neck up.
- Pain in head and neck and spine after physical activity.
- Ringing in right ear.
My surgery is currently scheduled for Feb. 18th with Dr. Karni and Dr. Day in Houston, TX. Actually hoping to move it up to next week. After corresponding with multiple doctors, I felt this team was the best equipped to handle, incredibly responsive and genuinely concerned. The plan is to go in intraorally but if the doctors determine during surgery that the intraoral approach is ill-advised, they will pivot and perform the extraoral approach. I trust the doctors will make the right decision.
I will keep everyone updated, and like many others, I am hopeful and optimistic that I will be able to return to a normal active life shortly. I, too, am an athlete and love to be outdoors. As I write this, I am in the mountains with a group of my friends - they are out skiing and I am in bed . I would like to see this change sooner rather than later.
With that, I’ll keep everyone posted on progress and surgery! Worth mentioning that while I am working hard to stay optimistic, this has been the most challenging physical and emotional experience of my life, with wide-reaching impact on my personal and professional life, and if I can be a source of strength for anyone in this forum, consider it done. My partner has been there for me through this process, but unless you’ve experienced it firsthand, I don’t know that there’s any way to fully explain the journey.