Hi all! This is my first post after seeing many post before becoming a member. I was dx with bilateral eagles syndrome by a radiologist on one of my many visits to the hospital back in November 2024. I’m a 39 yr old female. Never been hospitalized or been to a dr outside of my primary Dr. prior to this. My symptoms prior to my dx had me running around from 2 ENTS, dentist (thought I had an abscess tooth), hematology (cause they thought my slight anemia was causing my dizziness which I knew it wasn’t), cardiology since I developed symptoms related POTS, which have subsided thank god, neurology, and rheumatology. Plus 3 ER visit and one admission to hospital within a month time span. Needless to say that time period was the worse I have experienced in my entire life. I don’t wish this dx on anyone, I know there are worse things in life, but eagles syndrome should be up on that list.
My symptoms occurred spontaneously in Oct 2024 while at work:
-brain fog
dizziness
Right side jaw pain
skull base pain
Head pressure/bad headaches 24/7
GI disturbances- since subsided so probably related to stress during that time
POTS
Ear pressure/pain- especially while driving
back pain which I had prior to dx but ramped up during this period
Weird chest tightness especially when laying down or when in a stressful environment (very strange, I had many ekgs and all normal)
I never experienced throat pain or difficulty swallowing, not sure why but maybe because my styloids were mildly elongated.
I’m sure I’m missing some but these are the major ones that kept sending me to the ER until I finally had a ct of sinuses that reveal eagles. All the test they ran they couldn’t find anything, labs were all normal. Drs thought I was crazy, as I kept saying something is not right. I must say they ran every test they possible could so I’m grateful for that. The radiologist is the one that finally caught it.
I had a steroid/lido injection in February that last me about three days, but also gave the head and neck surgeon more confidence that my symptoms were related to eagles. Surgery was schedule for 3/10/25
Currently I am 5 days post intraoral right tonsillectomy/styloidectomy and recovery is going well. The symptoms I have noticed that have dissipated are the head/ear pressure. I’m praying it gets much better, but I may have to take the other styloid out to feel the full effects. The dr says sometimes the other styloid acts up after one is removed.
I hope my list helps others here. Let it be known you are not crazy, although I must admit I felt that way at the time. Nobody knows how you feel except you. Please advocate for yourself. Praying for all dealing with this, it is not easy. Pls keep the faith. I must add this forum gave me the necessary strength to keep pushing and eventually move forward with surgery. You all are amazing and gave me so much inspiration and insight. I am forever grateful. I don’t know what I would be doing if I didn’t find this forum.
I’m really glad you’ve had surgery & that the information on our forum has helped you get to where you are today. Since you have bilateral ES, there is a good chance you’ll need to get the other side taken care of as you noted as that seems to be the most common experience among those of us who’ve had bilateral ES.
It’s great that you’ve already noticed some positive symptoms relief. In case you’re not aware, your symptoms may come & go for a number of months as you recover. Nerve healing is slow & can take up to a year in some cases. Don’t be discouraged if you go through some really good days that are followed by days that are more painful or where you feel more fatigued again. It’s part of the healing process & the way your body keeps you “down” a bit so it can heal.
Do you mind sharing who did your surgery? We’re always looking for doctors familiar w/ ES & experienced w/ ES surgery to add to our Doctors List & it sounds like you found someone who we would add.
Since you’re still in early post op recovery, please keep us updated as to how your recovery is going as time passes. We’re here to support you all along the way.
Thank you for the good advice! Yes, I have to keep telling myself there will be good and bad days. My right side was more symptomatic so we did that side first. I guess time will tell if I need to do the other side too. But the Dr. did say this as well.
I went to Dr. Geoffrey Young head and neck surgeon in Miami Fl. Excellent surgeon and very thorough and honest as far as expectations. He only does intraoral and one side at a time.
And yes I’ll be sure to keep everyone posted with my recovery!
I’m glad that you have seen some improvements with your surgery! Often intra-oral surgery seems to be more painful & take a bit longer to heal from, have you found eating, swallowing etc is difficult?
Praying you heal well & see more improvements with time
Hi! Yes, eating and swallowing have been challenging especially the first 3 days. I was given a steroid pack, antibiotics, and pain meds to go home with, which all have helped. I think the pain may be more from the tonsil removal which I was hoping he didn’t have to take, but he said the tonsil was in the way so he had to take it. I’m definitely able to eat more now, but little by little. Trying my best to at least stay hydrated by drinking water. I’m more fatigued than anything. I didn’t realize how exhausted I would be, wasn’t prepared for that. Yesterday I finally went for a little walk around my neighborhood so that was nice, I missed my walks.
All in all, my recovery has been uneventful, this forum prepared me in the best way possible…just taking this journey day by day as things heal in there.
Btw…Did you all have significant fatigue after surgery? And how long did it last? Maybe it’s the meds, but I stopped the narcotics since post op day 2, just on Tylenol which controls my pain. Today is post op day 6.
How long did it take for you to feel like yourself again after the surgeries?
Fatigue was one of my most challenging post op symptoms as well. At two months to the day after my surgery I woke up in the morning & felt like my old self. It was very odd how I went from dragging around to back on my feet literally overnight. After my second surgery, I only had 6 weeks of fatigue. That said, I had my third surgery at the end of Oct. last year & had basically no post op fatigue. I joked that my body must be getting used to these surgeries now.
I think fatigue is part of your body’s way of keeping you less active while it’s healing. When the fatigue lets up, it’s a positive sign that significant progress has been made in the healing arena. Recovery from ES is an exercise in patience. I’m glad you’re doing so well already!
