First, a thank you to all of you who have posted your stories here, and have helped so many who are seeking for relief.
I live in Canada and have had Eagle Syndrome symptoms for at least 4 years now. I have it bilaterally- with 6 cm on the left, and 4.3 on the right. Because of a car accident many years ago, I ignored my neck pain and assumed this was my whiplash worsening. I then began having left sided weakness and TIA symptoms. I was hospitalized in the cardiac unit, as I have also had palpitations, and during a particularly troubling episode of palpitations and shortness of breath, an arrythmia was found on an ECG. During my hospitalization, I noticed that my chest symptoms were always precipitated by a buzzing feeling in my neck. The doctors found this odd, but when my heart checked out ok and the abnormal rhythm never returned, I was released.
I have been to many specialists, and eventually was told that my symptoms must be stress. I insisted this was PHYSICAL, but was not heard. I was referred to a psychologist. After time, even those close to me wondered what was going on when all of my doctors ignored my ongoing symptoms. The symptoms only worsened. I began having trouble swallowing, having neck and face pain, and the intermittent weakness/tingling on my left side continued. Sleep was so difficult- as moving my neck to the left made me feel like I was going to pass out.
Finally, just over a year ago, my family doctor referred me to an ENT. I had discovered a hard lump behind my ear that was painful, and seemed to be related to my other symptoms. When I saw the ENT, she suggested we rule out eagle syndrome, indicating the likelihood was next to zero- but that we should just do the CT in case. A month later, I learned that I do in fact have Eagle Syndrome.
I was shocked- and scared- but also relieved, thinking that I finally had an answer, and logic would mean that I also had a solution.
That has not proven to be the case.
After 2 neurologists and a neurosurgeon (none of which have seen ES), it has been determined that they cannot prove that my symptoms will improve if I have surgery.
Finally, because of posts I read here, I decided to pay out of pocket to see a dr with experience. I saw Dr Cognetti in Philadelphia. He was very kind and professional. I explained that my concern was really about having the vascular form of eagle syndrome. I asked him if he had ever done surgery on someone with vascular symptoms, and he said he had not. He has recommended surgery, and is willing to perform it. I am still debating about going ahead with him because of his ES experience- but I am concerned due to my vascular symptoms (I now have orthostatic imbalance, wake up with my left arm asleep routinely, and have pulsatile tinnitus, etc) that I should have someone do the surgery that is prepared for any vascular complications.
My situation is complicated by the fact that I had a severe reaction to contrast dye several years ago, so my images do not indicate whethere there is vascular compression or not. There was an attempt made at a carotid ultrasound, but the technician couldn't keep the wand on my artery while my head was turned. Again, these hurdles have made my doctors here in Canada hesitant to act.
Honestly, I am becoming more concerned about inaction than any non-relief of existing symptoms following surgery.
So, at this point I have contacted Dr Snyderman in Pittsburgh. He will have just received my chart. I understand he has a background in neurology, but is also an ENT. I am praying he will know what to do for me.
I have been on a quiet emotional rollercoaster. I know that if I let myself become too worried, that I will only feel worse. I keep going each day, but that is becoming increasingly difficult. Exertion causes symptoms, and that is really tricky. I used to be very active, and loved to golf, jog and play sports. I can no longer do that. I so hope that the active part of my life will return one day soon. I am 43, a mother of four, and have so many blessings in my life in spite of this challenge.
I have been following many of your stories over the last few years. I've done so without sharing my story, and also my gratitude for those of you who share so much of your struggles with us. Your courage and hope have strengthened me- and your frustrations have taught me that I'm not alone. I can't thank you enough.
I can't wait to hear about the upcoming surgeries, and I especially want to hear about those who have seen- and will see- Dr Snyderman.
Here's to better days ahead!!