First, I want to thank everyone on this forum especially Isaiah and Jules who answered every single post. This forum gave me the strength to finally advocate for myself after years of doctors telling me I was “crazy.” Truly, I don’t know where I would be without this community.
For those who haven’t read my earlier posts, I suffer from a 3.8 cm styloid on the right and a 3.6 cm on the left. I experience many of the classic Eagle symptoms, but the worst for me have been the headaches and the nonstop feeling that something is stuck in my throat/choking.
In addition to that, I also suffer from hemifacial spasms, facial pain, pressure behind my ears, jaw pain, ear fullness, and numbness in my hand. The typical “lighting strike” when I turn my head. After trying many different medications and therapies, nothing truly helped. The only partial relief I ever got was from Botox and muscle relaxers, but once they wore off, everything came right back. None of which ever helped the choking though.
Over the course of a year, I lost over 50 pounds simply because I couldn’t eat. My diet was basically protein shakes, eggs, and oatmeal. I saw countless doctors who kept telling me nothing was wrong, that this was multifactorial and psychological. Most of them had never even heard of Eagle syndrome. Shockingly, not even the hospitalist in the emergency room hadn’t heard or it. Despite it being clearly visible on the CT scan and explicitly documented in the radiology report.
This forum became my lifeline and my resource for finding knowledgeable doctors. Living in New Jersey with BCBS, my options were very limited. I did see Dr. Osborne, but unfortunately with my insurance I would have owed a significant amount out of pocket, which wasn’t feasible. I also saw Dr. Shohet in NYC, who while kind, didn’t seem fully knowledgeable about what was actually happening to me although he did refer me to a throat specialist, which I appreciated. The barium swallow ordered determined that when I said I was choking, the food was not even in my throat yet just on the very back of my tounge
Through this group, I found Dr. Paskhover—not initially for surgery, but because he actually knew what Eagle syndrome was. Because he was very apprehensive about surgery, he referred me to Dr. Agrawalla, who did agree surgery was an option. However, his hesitation and recommendation to try Botox one more time, which would have set me back another 4–5 months didn’t sit right with me.
Through this group, I also learned about Dr. Liu (whose actual main focus in aneurysms but fell into this by accident becuase head and neck surgeons would call him in to be the secondary Dr) whose office is right next to Dr. Paskhover’s. He took me seriously and immediately and connected me with Dr. Mir( head and neck surgeon who is a oncologists and vascular specialist. He mainly removes tumors from the skull base ) who is actually in Dr. Paskhover’s office. From the very beginning, they were honest: this surgery may or may not resolve everything but they were willing to try. (They have reported that they are doing 3 per month and nerve monitor) That alone meant everything to me and why Im perusing them.
Dr. Liu and Dr. Mir are the only doctors who truly listened and took me seriously. Dr. Liu, being a neurosurgeon, also believes he can explain the facial spasms and hand numbness and plans to confirm his findings during surgery, which is scheduled for January 30.
Finally, after 7 months of an official diagnosis, 5 years of unexplained symptoms, endless medical bills, missed work, sleepless nights, and overwhelming stress I feel like I can finally see the end of this road.
To anyone still searching for answers: don’t give up. Advocate for yourself. Use this forum. You are not alone and you are not crazy!!
IM very nervous for surgery but will update after its done. Thank you again everyone. .
