# Hemifacial Spasms turned out to be Eagles Syndrome **URL:** \ **Category:** General\ **Created:** [June 9, 2025, 1:04am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405 "2025-06-09T01:04:16Z")\ **Posts on this page:** 17\ **Page:** 3
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [October 17, 2025, 3:12am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/42 "2025-10-17T03:12:31Z")
@babsbr - Thank you for your update. Super awesome 🥳 that your symptoms have nearly completely resolved in 5 weeks!! Having less endurance than usual is normal, as you noted. That will go away just like your symptoms have. I’m glad you included the pictures - which are worth a thousand words - as it’s said! What a mess you had in your neck & what a big, plump beautiful IJV you ended up with once all the “bad guys” were removed! Your incision looks great for being only 5 weeks old! The silicone scar gel you’re using is working wonders! I hope your second surgery gets rid of anything that remains & is slowing you down. 💖 ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [October 17, 2025, 6:56pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/43 "2025-10-17T18:56:51Z")
I’m so pleased that this surgery has been successful for you! Great that you’re seeing symptoms improved so quickly & are feeling well enough to get back to exercising… really interesting to see the compressions & the freed IJV. Hopefully the second surgery will be successful too, let us know when you do get a date! ---
**Author:** ![babsbr](https://avatars.discourse-cdn.com/v4/letter/b/b487fb/32.png) [@babsbr](https://forum.livingwitheagle.org/u/babsbr)\ **Post date:** [February 7, 2026, 3:58pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/44 "2026-02-07T15:58:05Z")
Hi ES Angles, Miss you all! Thought I would post an update on my recovery just about 5 months out post op. Here are some images on my scar healing, PO CTV showing the area where the huge styloid was removed, the C1 resection area PO and the status on the other side that has yet to be removed. Unfortunately, I have some break out facial spasms, mainly occurring after I have been too social, speaking, eating crunchy foods, lots of jaw movement. We are currently troubleshooting this further. One can only imagine the amount of nerve irritation from the huge styloid. Wishing the best to you all as you move through your own ES journey! ![BBR CTV 12.8.25 C1 shave images X](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/3/32826d1dfb9a8e16dac816a3706a119dd33ce1d2.jpeg) ![BBR CTV 12.8.25 Left Side 2 X](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/9/9a9bbe47c6a5163bf67a0c362497602d989d0a0f.jpeg) ![BBR CTV 12.8.25 front jaw removed X](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/0/001ac8f785d1cccf8e08caca40d7e981322310d9.jpeg) ![IMG_9558](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/2/2126ab085389b721ce9f5393f41311c2f7ba44f8.jpeg) ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [February 7, 2026, 8:36pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/45 "2026-02-07T20:36:08Z")
Thank you for your update. WHAT A DIFFERENCE, @babsbr!! Thank goodness your other styloid isn’t as big as the left one was! I’m sorry you’re still getting some facial spasms, but it can take up to a year or more for those upset nerves to fully recover. I had that experience. Here’s hoping that with more healing time, those facial spasms will gradually disappear. Please let us know when your next surgery is scheduled. With both your styloids gone, you should feel AMAZING! ---
**Author:** ![babsbr](https://avatars.discourse-cdn.com/v4/letter/b/b487fb/32.png) [@babsbr](https://forum.livingwitheagle.org/u/babsbr)\ **Post date:** [February 8, 2026, 10:01pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/46 "2026-02-08T22:01:46Z")
Will do. I have so much appreciation for this board and all of you who post here. At the very least, I’m trying to post images and info that I wish I had access to. It’s interesting to see the images of the actual surgery and the post op CTV showing the amount of the C1 they removed along with the pieces of the styloid that were left (I have two little nubs, top and bottom still in there) add in the expansion of the IJV. Hopefully this info will help others. ❤ ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [February 8, 2026, 10:03pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/47 "2026-02-08T22:03:36Z")
That’s looking really good! I hope that the recurrence of symptoms are just from a bit of over-use of the muscles in that area, like as @Isaiah_40_31 says it can take nerves a long while to heal fully. That other side is still pretty long & angled so will be good to be rid of that as well! 🤗 🤗 ---
**Author:** ![babsbr](https://avatars.discourse-cdn.com/v4/letter/b/b487fb/32.png) [@babsbr](https://forum.livingwitheagle.org/u/babsbr)\ **Post date:** [September 16, 2026, 7:54pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/48 "2026-09-16T19:54:31Z")
Hello all eagles warriors, I’m back again with an update. Yesterday morning on 9/15/26 I completed the removal of my second styloid with the dream team Dr. Costantino and Dr. Tobias out at Northern West Chester Hospital. So far it was a success. For those following this case, I have made a remarkable recovery! The hemifacial spasms and facial numbness are 99.9% resolved and I trekked the Camino De Santiago in Spain this past summer. We waited a full year for my left styloidectomy and C1 resection to heal before tackling the right side. Glad it came out yesterday, it was indeed still growing. Today I came home to recover and will follow up with the group with post op reports, imaging, etc. as my healing progresses. Attached are images from this second surgery. I will begin vitamins, silicone strips etc same as last time. Wishing you all well and hoping this information helps pave the road more successful recoveries!!! ![IMG_0616](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/a/a80defc01ccc50ffca8761754b167e3664c35d53.jpeg) ![IMG_0615](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/0/0bf02b8b4b0b79e6a8dbd89daffbb14e9cbc58d8.jpeg) ![IMG_2374](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/b/ba7ccad59bf75576968cb48f91f92c1cb476079e.jpeg) ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [September 17, 2026, 5:37am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/49 "2026-09-17T05:37:34Z")
@babsbr - Thank you for your update. I’m so glad your first surgery made such a big difference for you, & I hope the second one resolves the remaining symptoms. I’m excited to hear you hiked the Camino. I’m doing it next spring w/ 3 friends - SJPD to Santiago de Compostela. Is that the route you hiked? Your IJV looks nicely plumped up in the picture you posted. 😊 ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [September 17, 2026, 9:31am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/50 "2026-09-17T09:31:31Z")
I’m glad that your first surgery was so successful, thank you for that update, & brilliant that you did that trek through summer! I hope your second surgery helps resolve symptoms, best wishes for that and prayers! 🙏 🤗 💐 ---
**Author:** ![babsbr](https://avatars.discourse-cdn.com/v4/letter/b/b487fb/32.png) [@babsbr](https://forum.livingwitheagle.org/u/babsbr)\ **Post date:** [September 17, 2026, 12:31pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/51 "2026-09-17T12:31:58Z")
Yes Camino Francis. This was my second camino. It is a soul changing experience. Buen Camino! ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [September 17, 2026, 9:28pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/52 "2026-09-17T21:28:45Z")
Congrats on A LOT of miles walked, @babsbr! I’m hoping my knees will hold out. 😂 ---
**Author:** ![babsbr](https://avatars.discourse-cdn.com/v4/letter/b/b487fb/32.png) [@babsbr](https://forum.livingwitheagle.org/u/babsbr)\ **Post date:** [September 25, 2026, 12:28am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/53 "2026-09-25T00:28:48Z")
Hello Eagles Warriors, Today is 9 days post op from my second styloidectomy IJV decompression. Attached are images of the incision site as of day 9, Dr.C removed the surgical tape(uggg). I’m also having an issue with my Spinal Accessory Nerve due to the surgery. They gave me a script for PT and it will be a few months of work to get my arm strength back. While sitting in the waiting room at Dr. C & Dr. T’s office I saw a woman who was clearly distressed about her appointment, and I realized she was there for an Eagles Consult. Turns out she was from England, 51 years old and had traveled all the way to the USA to meet with their team. I offered to share my experience with the doctors, realizing that many of us only hear about the failed outcomes. Listen to me! There are many POSITIVE outcomes! But it seems that people who are well and back to living their lives don’t come back here often. I am here to say… Get treatment if you can. Every surgery is different. During the recovery process you will need to be strong and be patient. Trust in the experience of your medical team. They are talented and experienced. I will continue to update you all here in the board as my recovery progresses. Barbara ![IMG_2491](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/b/b605114b62128257e67b21c641239d4a414d9fd5.jpeg) ---
**Author:** ![babsbr](https://avatars.discourse-cdn.com/v4/letter/b/b487fb/32.png) [@babsbr](https://forum.livingwitheagle.org/u/babsbr)\ **Post date:** [September 25, 2026, 12:32am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/54 "2026-09-25T00:32:37Z")
Here are pics of the incision site from my first surgery a year ago. Someone asked how old I am… I’m 57 years old. I’m not shy about this info or offended by the question. This way you have a basis for my recovery process. ![IMG_2495](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/0/0dfcd3141cab931fa79ae31e5a5069a600000024.jpeg) ![IMG_2494](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/6/685df23f7344bbfdfa55549da6bcaa9f24d5b796.jpeg) ---
**Author:** ![lsheep](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/lsheep/32/14121_2.png) [@lsheep](https://forum.livingwitheagle.org/u/lsheep)\ **Post date:** [September 25, 2026, 1:32am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/55 "2026-09-25T01:32:13Z")
Your incision looks amazing!! Thank you for sharing your images/story and sharing HOPE! I am 34 days away from my right side being evicted and trying to stay positive & excited. ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [September 25, 2026, 10:45am UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/56 "2026-09-25T10:45:14Z")
I hope that your arm issues resolve sooner than you think, but it’s good that you’re prepared for what might be needed… Thank you for sharing your story, it’s encouraging for others, and I hope having the second side done does resolve all your symptoms! Were you able to point the lady towards this site? It’s a shame that she’d travelled from the UK, but we do only have one surgeon here experienced with IJV compression 🙄 Thank you for the update , Hugs and prayers 🤗 🙏 ---
**Author:** ![Chrickychricky](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/chrickychricky/32/15581_2.png) [@Chrickychricky](https://forum.livingwitheagle.org/u/Chrickychricky)\ **Post date:** [September 25, 2026, 12:42pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/57 "2026-09-25T12:42:42Z")
@babsbr Looks amazing!! ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [September 25, 2026, 3:16pm UTC](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405/58 "2026-09-25T15:16:10Z")
@babsbr - Your present incision is very clean & should heal beautifully like your first one. I was 58 when I had my ES surgeries & also had the same good incision healing experience you’ve had. I think that’s a testimony to how skilled a surgeon Dr. C is & also to your body’s healing ability. And yes, thank you so much for coming back to share your good surgery results from round one. I also hope this second surgery provides an end to your symptoms. I’ll pray for your shoulder to recover well. 🤗 [Previous page](https://forum.livingwitheagle.org/t/hemifacial-spasms-turned-out-to-be-eagles-syndrome/19405.md?page=2)