Hello!
I am from Montreal, Quebec, Canada. I joined Living with Eagles last July; however, this is my first time posting and sharing my experience. I am tremendously grateful for all the knowledge I have gained from this online community – this forum has truly become a bright light of hope during this challenging time. I have spent the past 15 months on an emotion rollercoaster attending countless doctor’s appointments and passing numerous tests, trying to make sense of a cluster of debilitating symptoms that are affecting my daily life. One would think that after meeting with almost 10 doctors that someone would be able to provide me with some solid answers, but unfortunately this has not been the case.
In Quebec, (as it is in all of Canada) we have Medicare. Don’t get me wrong, we are extremely fortunate to have Medicare in Canada, but unfortunately in Quebec there is a massive shortage of family doctors, hence why I do not have a family physician - which has made the experience of seeking help even more of a challenge.
In July 2022 I started to feel a strange stabbing pain on the left side of my throat. I have been prone to strep and throat infections for my entire life, so I simply brushed this constant pain off as an infection of sorts. Shortly after my throat issues started, I began to feel a strange feeling of pressure in my head, it was so severe that it felt as if I was being strangled. This odd sensation would get so intense that sometimes it felt as if I was going to pass out. I also felt like I was floating at times… It was all very unfamiliar and scary. But of course, I continued to ignore all these alarming symptoms and attributed them to mundane causes such as work stress.
Fast forward to December 2022 when I woke up one morning unable get out of bed due to the unbelievable pressure I was feeling in my head. The pain in my throat was horrific, and I had completely lost my voice. The combination of all these painful symptoms scared me so I automatically scheduled a doctor’s appointment.
The first doctor I saw thought that I had a thyroid issue and referred me to an ENT. That ENT concluded that I had acid reflux…but referred me to have a thyroid ultrasound anyway. Many doctors and tests later, I was beginning to feel extremely discouraged. I had passed a thyroid ultrasound, chest X-ray, and had my blood work done multiple times – all which came back normal.
Finally, I met with a 6th doctor, an ENT (my 3rd) at one of the largest hospitals in Montreal. She was also extremely confused by my mixed bag of symptoms for my vocal cords were perfect…my voice issue and pain were a mystery. She ended up referring me to pass a CT scan. A couple weeks after I had my CT scan, I went back to see the ENT to retrieve my results. The Doctor opened my results in front of me and automatically said that there was no disease (cancer) in my neck and that I was fine… I was obviously extremely relieved but couldn’t help but feel totally baffled… Was I losing my mind? I started to question her - was it long covid that was causing all these debilitating symptoms? Was it a hormone issue? Did it have anything to do with my immune system? (I was recently diagnosed with Sebo-Psoriasis, and my younger brother was diagnosed with Scleroderma as a teen). She annoyingly dismissed my questions and handed me a referral to see a private chiropractor at a private Clinique she worked at because, as she explained, I had “tension” in my neck. She then sent me on my way, but before I left, she lifted my hair and looked at both sides of my neck as if I were an alien. I found this to be very puzzling, but I was eager to get out of her office. I was perplexed by my CT results but started to work on my next plan. I decided to keep on searching for answers but within the private medical system. I was fed up but determined.
6 weeks after receiving my CT scan results, I was still suffering from these odd symptoms at home (as I have been unable to work). I was awaiting my upcoming doctor’s appointment at a private Clinique when suddenly I received a notification that my CT scan results were available in my Medicare file online. I had already received the results, so I wasn’t quick to review them, but when I did… I was in complete shock!!! They had found something in my CT scan! The radiologist’s conclusion was (translated from French):
Presence of partial ossification of the Stylohyoid ligaments bilaterally, leading to elongation of the Styloid processes, which may cause Eagle syndrome, and therefore possibly explain the patient’s symptoms.
I immediately began to Google my life away for what seemed like days. I couldn’t believe it; all my symptoms could be perhaps explained. But why did the doctor fail to mention these important findings with me? She said I was fine? After all these tests and appointments… Did I have Eagles Syndrome???
In my Google mania, I luckily landed on this platform which turned out to be a godsend. Based on the information I obtained on this forum, I then retrieved my CT scan and added the images into the 3D Slicer program. I wasn’t sure I would be able to notice anything weird in my 3D images, but once they were rendered, I saw that there was indeed something there.
A few days later I found a medical report written by a Dr. Ayad from Montreal who had treated a patient with eagles syndrome and had performed a styloidectomy. I had a private doctor refer me to him and anxiously awaited my appointment.
3 months later, I saw Dr. Ayad. The first thing he said to me was that I DID NOT want this surgery!!! He was incredibly adamant and kept on reiterating that the surgery was risky and a styloidectomy could cause tons of issues, he had seen it himself, it was not a good idea. I was so confused because I did not receive a diagnosis. Why was he discussing surgery within the first few seconds of this appointment??? He then mentioned that he was unsure if my symptoms were being caused by the elongated styloid process or the calcified ligament. At this point (we are now in June 2023), I had developed another weird symptom - shooting pains in my face and neck. He sent me off to pass an MRI as he thought I had Trigeminal neuralgia. I was very puzzled by the appointment but just went with the flow.
A few weeks later I attended a second appointment with Ayad. My MRI was normal. I just want to state that I think doctor Ayad is an incredible doctor, he was very kind and professional. He reiterated again that surgery could do more harm than good. He sent me off to a neurologist. I did leave his office extremely confused as he could not even confirm a concrete diagnosis.
I saw a neurologist in September who simply passed my symptoms off as migraines. He did not want to hear anything about eagles syndrome and was quite rude in general actually. He sent me off with a bunch of meds (meds that I am not taking except for Rizatriptan that helps a bit).
Within the past few months, I have done quite a bit of research and have read many of your posts on this platform. I now know that many doctors do not treat eagles syndrome, and that the surgery should only be performed by a surgeon who is performing styloidectomys on a regular basis. I am actively trying to help myself manage my symptoms by using various natural methods such as an anti-inflammatory diet, exercise, meditation etc. The good news is that my voice is better on most days, however the debilitating head pressure continues, varying in severity daily. I recently had covid for the second time which seemed to have made the symptoms worse again. I am also still dealing with fatigue, dizziness, shooting pains in my face and neck, pain in my throat, but the worst symptom by far is the head pressure/strangling feeling.
My plan moving forward is to manage my symptoms on my own as much as possible so that I can return to work. I also want answers… I would love to get numerous other opinions. I would love to understand my CT scan and MRI - have someone walk me through them. Has anyone had any luck finding a specialist in Canada? Have you seen a specialist in the U.S? The 3D renderings I have rendered are solely in the bone view. On this site I have seen quite a few detailed renders that depict arteries etc. I will review the tutorials once again so that I can also share those images.
As much as this has been a nightmare, I am positive that I will get to the bottom of these symptoms as I am determined to get my life back.
). (These comments for Nicole and all going through this)…