I wanted to share my six-month post-operative outcome in hopes that it may offer reassurance and encouragement to those who are earlier in their journey.
Preoperative Symptoms
Prior to surgery, I experienced a wide range of debilitating symptoms, including:
Severe neck pain
Brain fog
Facial and dental pain, including trigeminal neuralgia (10/10 in severity and my most debilitating symptom)
Chronic tinnitus
Shoulder pain
Heart palpitations and tachycardia
Orthostatic hypotension
Hemiplegic migraines
Persistent sinusitis and sore throat
Constipation
Severe cold intolerance
Hypersalivation
TMJ dysfunction with popping and clicking
Extreme hair loss
Debilitating anxiety that was often dismissed as “irrational”
Dry eye
Increased Intraocular pressures
(There were likely additional symptoms, as the burden was extensive.)
Six-Month Post-Operative Status
As of December 25, 2025, I reached my six-month post-operative milestone. I am grateful to report that the majority of my symptoms have fully resolved. The only remaining issues include:
Persistent tinnitus- More excessive with neck movements. Will choose to remain optimistic on recovery till my 1 yr marker!
Mild right-sided shoulder discomfort when sleeping
Ongoing jaw misalignment
Occasionally, I experience mild jaw pain or dental tenderness if I am overly aggressive with neck movements; however, these flares resolve quickly with rest.
My proactive measures:
Vitamin B supplementation for nerve healing, which provided both physiological support and peace of mind. (effectiveness is “debatable”)
Pilates (three times weekly, as tolerated) — this has significantly improved my strength, posture, and overall alignment. I strongly recommend it as a complementary treatment and recovery modality.
ALF therapy with an integrative dental specialist, focused on correcting jaw misalignment caused by prior mistreatment. I have seen rapid and meaningful improvement over the past six months. For those experiencing TMJ dysfunction, clenching, or jaw popping, I cannot recommend this approach highly enough. Splint therapy proved far more effective—and considerably less damaging—than the multiple mouth guards I was previously prescribed.
To everyone who contributes to this forum, I am deeply grateful for the compassion, knowledge, and unwavering support you offer. This journey has been extraordinarily challenging, both physically and mentally, and there were moments when I genuinely feared I would not make it through.
What I know now is this: Eagle Syndrome survivors are remarkably resilient. We fight relentlessly for answers, often in the face of dismissal and disbelief. I thank every individual who continues to share their experience and guidance, and I encourage those who have reached the other side to keep telling their stories. By continuing to advocate for ourselves, challenging medical dismissal, and spreading awareness, we strengthen this community—and ultimately, we save lives.
***I was able to create a website with the help of the many experts in this forum that provides a small overview of this condition. I am using this site to give insight to both my providers and other people looking for answers. Perhaps it will help educate those providers willing to listen. ( Please let me know if that’s okay to share)
I’m so pleased for you that so many symptoms have resolved/ improved! That’s great to hear, and hoping that your remaining symptoms do disappear too… Thank you for updating us, and all the support you’ve given on the forum, and definitely fine to share your site!
@vcp02 Do you remember how long it took for the area around your incision to start to soften and settle? I’m 21 days post-op, and my left incision is still very full and hard. My right side is less so, but that side was accessed through a prior parotidectomy incision.
I know I’m still early post-op, but one of the biggest changes I’ve noticed already is the swelling in my face going down, so much so that friends are commenting on it. My nose is going back to normal, though my cheeks are still huge… I definitely look a bit cartoonish right now
You healed very nicely. I expect the same, I just don’t recall as much firmness with my parotidectomy, though that surgery wasn’t as deep as a styloidectomy, which likely changes the scar tissue and healing pattern.
I cant say my swelling was ever too significant thanks to the “headbra” I was instructed to wear. We had a love hate relationship. My skin in general has always been on the more sensitive side so I actually still do have about a 2ish cm nodule under my ears. It slow to improve but each month it keeps going down. I had to discontinue the cream given because it irritated my skin but just re-initiated a few days ago. Biocorneum scar treatment is what was advised for a full year.
Dr. Osborne also performed my bilateral styloidectomies. The headbra was definitely uncomfortable, but once I was able to stop wearing it, I realized just how much support it had actually been providing.
Both sides are healing really well, and I understand the firmness is part of the normal healing process. It’s helpful to hear that it can take longer to fully soften than what I’ve read online.
I did start using the Biocorneum cream as instructed, though I’m not a huge fan of how sticky it feels and that it remains tacky. When I had a prior parotidectomy, my incision extended from the ear down toward the mid-neck, and I used AWD Medical silicone scar tape, which worked really well for me.”
@MGORNEAU - A number of our members have had great incision recovery results by using silicone scar tape or patches. We’ve had a couple of brands suggested on our forum over the last several years but I’m not sure if they’re really all that different from each other. Since the brand you used after your parotidectomy was helpful, you could certainly use it on your neck incision.
Another thing that may help with the way your incision feels is to begin gentle fingertip massage using a lubricant on your fingertips (Bio Oil, Avocado, Olive, Coconut or vitamin E oils) to prevent friction. Doing this a couple of times/day may also help soften your incision.
Hi @vcp02 - Happy you are doing better overall! Glad the ALF appliance is working for you, but…I’m in Adult Palate Expansion group on FB and it is highly discouraged there. It seems like you are not using it in that context, but I did want to point out there is currently a lawsuit against it. It moves teeth, not bone.
I am so happy to hear of your healing progress! Thank you so much for sharing your story to encourage others to stay in the fight. I will check out your website. I don’t experience Eagles personally but have been fighting for answers for my non verbal son. He has many of the symptoms you mentioned and probably others we don’t know about because he can’t verbalize them. It’s exhausting and extremely difficult to watch a loved one in this much pain and discomfort for years now. I’m thankful we know now what is causing this debilitating condition but frustrated we haven’t been able to get him help sooner with the amount of doctors who totally dismiss his condition especially since he is non-verbal. My heart goes out to all of you who are suffering and pray for your peace and complete healing. We have been able to use homeopathic remedies and cbd to help with some of the symptoms until we can get him surgery.
Thank you for your update, @KarenG. I’m glad you’ve found some homeopathic remedies that are helping reduce your son’s pain/symptoms. Is he scheduled for surgery w/ anyone yet?
I will continue to pray for you & for him as you continue down the ES path toward healing.
@Isaiah_40_31 Ben had an appt with Dr. Fargen on Dec 30 but sadly we had to cancel because he was having the pain cycle with extreme behaviors day and night for a week before. He cut his thumb on a door strike plate (freak accident) the day we were supposed to leave. We decided we would leave the next morning but needed to leave about 5am to make the appt in time. He woke up at 4 screaming hitting his head and and pounding walls which reopened the cut so we had to clean him up and re bandage his hand. At that point we had to make a quick decision as time was short and felt the 7 hour trip wouldn’t be safe for any of us. I have asked several times if Dr. Fargen would do a virtual or just a phone call so we could get the details of the surgery but his staff said he doesn’t do that. Unfortunately he is booked out until March but I did request they put Ben on the cancellation call list. I looked at the doctor list again to see if there was anyone else that might help but Dr. Fargen has already acknowledged that Ben needs surgery and I don’t want to start over. We don’t have a lot of options with the added complications. The homeopathic remedies help with some symptoms but not when he has the extreme pain. I am heartbroken and up to now I have been able to hold off depression but since Tuesday I haven’t been very successful. Thank you for asking.
Thank you so much for this ecouraging message! I greeted the New Year with gratitude that I had found validation for all the symptoms you described along with hope that my surgery in February will give me relief - any relief! Yes, we are resilient - we are thrivers!
@KarenG - I am so sorry for what happened & that you’re facing another wait. I wonder if you could arrange w/ Dr. Fargen’s ofc for Ben’s surgery to occur during the same visit for his consult due to your unusual circumstances. If you can begin arranging that now, it could save you having to face the drive & associated challenges twice. Dr. Nakaji does that for his patients who travel from out of state. I’d be disappointed if Dr. Fargen isn’t willing to accommodate you in that manner.
@Isaiah_40_31 thank you, we can do the surgery in the same week. His staff is pretty adamant he does out of state patients on Tuesdays and surgery on Fridays. I’ve asked them to see if he is willing to do the surgery the next day but not much luck with that. Makes the trip longer but we will have to work it out. Thanks for letting me vent. I don’t share this with many people and appreciate that it’s safe here.
@KarenG - That’s REALLY good news! I’m so glad you only have to make one trip. Please feel free to vent here. It is a safe place, & you know we’re here for you. I struggle to comprehend how difficult your situation is with Ben’s condition & behavior. I have an acquaintance who has a similar situation with her adult son, but so far, ES hasn’t been a problem they’ve encountered.
Please let us know when you have your next consult & surgery dates. In the meantime, I’ll pray that all goes smoothly the second time around.
and up to now I have been able to hold off depression but since Tuesday I haven’t been very successful. Thank you for asking.