Hi everyone, I was recently diagnosed with Eagle Syndrome and possible IIH after many years of symptoms and repeatedly normal test results. I’ve had multiple brain MRIs, audiology exams, and countless doctor visits, and was often told my symptoms were due to allergies, migraines, or acid reflux. After years of asking my PCP for a referral to the ENT, who eventually referred me to Dr. Jian because my brain MRI was normal and I still have symptoms, Dr. Jian ordered a CT scan of the head with contrast. Although the radiology report looked “normal” on paper, I was surprised when Dr. Jian called to explain what he actually saw on the images and discussed the possibility of ES, with surgery presented as the primary treatment option.
While I’m SO relieved to finally have a physical explanation for what I’ve been experiencing (and to know it’s not psychological), I continue to struggle with severe tinnitus, chronic sleep deprivation because of it, left-sided ear fullness, nausea, neck discomfort, migraines and headaches, and persistently cold, sweaty hands and feet (I wear long sleeves even in the summer ).
I also want to sincerely THANK @Isaiah_40_31 for patiently reviewing and annotating my CT scan and being so generous with time and knowledge as I navigate this ES journey. I’m incredibly grateful for this community. Here are my scans:
Hi & welcome! So frustrating that you’ve had symptoms for a long time & not had a diagnosis, we do see that alot, but it’s good that Dr Jian has spotted this- would he do the surgery for you? As you obviously have vascular ES, it might be an idea to get a second opinion from one of the doctors experienced with this, the styloid does seem to be causing the IJV compression, but it may be that the C1 process needs to be shaved as well to fully decompress it. So Dr Nakaji in AZ would be the nearest to you , otherwise Dr Hepworth in CO, Dr Costantino in NY & Dr Cognetti in PA are all experienced with vascular ES.
Hope that you can have some treatment soon!
Hi @Jules , thank you for the warm welcome! I will bring it up to Dr. Jian, do you know if he is also doing C1 shave and vagus nerve decompression? I would definitely love to get a second opinion however I only have Kaiser insurance. I will call their office to see what my options are. Thanks so much for the recommendation!
Personally, it wasn’t a whether or not decision because life was nearly unlivable. It was a question of who was the best person for the job and how quickly could I get it done.
@Chrickychricky , you’re absolutely right. It’s mainly the quality of life that we’re addressing here. I’ve decided to proceed with the surgery. It’s so scary but gotta focus on the end result and hope for the best. Thank you for your insight. Really appreciate it.
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