I started having substantial neck and throat pain about 4 years ago. I had a neck CT where the found elongated and ossified SH. Bilateral but worse on one side. The radiologist identified it as eagles syndrome. However, my internist said “oh they just like finding these random things, it is how radiologists have fun, it is not causing your neck pain”. Not my doctor anymore, but for a while I tried to believe her. I joined this group a while back. I have had prolotherapy for neck pain, but that Dr. also didn’t really give legitimacy to eagle’s. He just thought I had unrelated nerve inflammation and damage. Went to an ENT - he said it was not the cause of my neck and throat pain and that I needed speech therapy.
At that point I had gone through enough and just focused on living my life . . . .in pain. The pain has become so bad, along with swallowing difficulty and a diagnosis of small fiber neuropathy and autonomic dysfunction that I went on disability last year, giving up my job. With the swallowing getting worse and the pain being very pronounced from my neck up, light headedness, migraines, etc, I am going back to eagle’s to see if it is possibly the root of a lot of my health issues. I am a surgery risk, so I knew that surgery was one of the only things that helps (and a few years ago a lot of people who had it done said the pain came back) and I avoid surgery unless critical. I did have surgery last year for female related issues and did great, so that gives me hope that I can get through surgery, but I was worked up pre surgery and had it done at Sloan Kettering in NYC, which was top notch.
So now I am trying to find a surgeon to pursue surgery for this. I live in the midwest but am willing to travel for a doctor that has a lot of experience and knowledge. I fear that I have arterial involvement with my bouts of lightheadedness and blackouts. I also have weird sensations in my ears, when I swallow there seems to be pressure going to my ears and a whooshing sound/sensation.
I have my original CTs from 4 years ago, I did have Brain/C spine MRIs done last year, no mention of Eagles (for migraines, pain, numbness in extremities ordered by my neurologist). There was no mention of the SH but I don’t know if they would be useful for a more recent look. I also had a plain film xray of my neck done for neck pain in March of this year, that doctor does not know of my elongated and ossified SH, but the xray came back with a note about elongated and calcified SH ligaments with nothing else identified as a cause for pain.
At the time of my CT - they noted that one side was elongated to the base of my tongue. That was 4 years ago, so I am sure that is why I am now having trouble swallowing.
I am getting ready to check into Dr. Samji and Dr. Cognetti. I also have the name of a couple of doctors in Florida, but I think they have only done a handful of these surgeries.
I would welcome any advice about how to proceed, if I would be better off getting a new CT scan or if the scans I have now are at least enough to get me scheduled with a surgeon for a consult. I really don’t want to go through the doctor mill again, I am ready to address this head on but with an experienced doctor well versed in Eagle’s.