Hey y’all. I’m sorry that I dropped off the face of the forum. I know that several of you were worried and reached out to me privately, but I haven’t had the time or energy to update here. I had surgery to place my J-tube in June, and I spent the majority of the summer going to the hospital every 48 hours for IV nutrition. The good news is I am finally running tube feeds at home, as well as IV hydration, on my own (for anyone new, please don’t worry — none of this is a result of eagle syndrome and unless you also have the other conditions I have, it’s not likely to be your fate!).
I do not have much of an update regarding my eagle syndrome. The severe symptoms that I was having the last time I posted have mostly subsided, flaring up a few times a month. I have adapted, learned how to position myself and move my body, learned what combination of heat/ICE/medication helps, and, because I’m not eating much orally, it flares up less frequently due to chewing. I’m still dealing with nearly constant pressure in my face, intermittent blurred vision, jaw pain, intermittent swelling, skull zaps, the feeling of a foreign body in my throat and so on, but I’m not fainting/blacking out/constantly dealing with it all. I’ve also been in therapy twice a week, something that I was hoping would help with my vEDS diagnosis/prognosis, and something that I also think is greatly helping with the eagle syndrome symptoms, and my other chronic illness symptoms in general. I was so hyper-focused on the possibility of dying that I was absolutely worsening my daily symptoms. Now that I’m less anxious on a daily basis, things are better physically as well. Friendly reminder that your mental health and physical health are intrinsically intertwined, and treating one while ignoring the other doesn’t benefit you much! If you can, if it’s accessible, if it’s at all possible – go to therapy to talk about your pain, fear, and suffering. It helps.
I believe I last reported that I had met with Dr. Ellison at Duke, virtually. He had a great and concerning sense of urgency, wanting me in to be seen and scheduled for surgery in no more than a month, after meeting with me once, and looking over my scans. Looking back, that sense of urgency is a large part of why I was so scared and stressed out. Unfortunately and without explanation, he canceled our virtual follow up, sent me a message telling me that I needed to come see him in person because after thinking about it more, he wasn’t convinced I had a Eagle Syndrome at all, thought my symptoms were due to TMJ and the insanely elongated and calcified processes and ligaments in my neck along with my compressed IJVs were incidental findings. I told him I had no problem coming to see him in person, and had obviously planned to regardless, but wanted to know what had changed his mind, and whether he minded me seeking a second opinion first. He never responded to me. He canceled the in person visit that I scheduled. I will never know or understand why this happened and the experience was extremely distressing, confusing, and disappointing. I immediately moved on to schedueling with Dr. Hackman at UNC Chapel Hill. Since booking the appointment, he has requested my imaging and uploaded it to my chart with his own commentary, stating that he is certain it is Eagle Syndrome, based on the imaging and my symptoms, and going into great detail about the findings. Unfortunately, as many of you know, he is booked far out in advance. My appointment was made a couple of months back for December 5. I am very much looking forward to that date. I will be driving from the coast to stay the night at my brothers in Durham the night before, and staying with them again, one more night after the appointment. Amidst all of this, I have gotten an updated CTA of my head and neck. Everything is stable and the same as it was in, what was it, May? that I last posted recent imaging here. I will update again, at the very least, after this appointment in December. I hope everyone is doing well and has an awesome holiday season. Between work, being in palliative care for my vEDS, adapting to tube feeding and so on I just don’t have a lot of energy to frequent web forums. You are all in my thoughts, nonetheless.
