# General **URL:** https://forum.livingwitheagle.org/c/general/8.md [Latest](https://forum.livingwitheagle.org/latest.md) · [Categories](https://forum.livingwitheagle.org/categories.md) · [Tags](https://forum.livingwitheagle.org/tags.md) --- ## [About the General category](https://forum.livingwitheagle.org/t/about-the-general-category/14)
**Author:** [@system](https://forum.livingwitheagle.org/u/system)\ **Replies:** 0\ **Last updated:** [April 22, 2016, 6:48pm UTC](https://forum.livingwitheagle.org/t/about-the-general-category/14 "2016-04-22T18:48:39Z")
Join the Eagle Syndrome discussion forum for patients, friends and families affected with Eagle Syndrome. We love to hear you stories and information about treatments, symptoms and side effects. --- ## [Fears About Surgery](https://forum.livingwitheagle.org/t/fears-about-surgery/24653)
**Author:** [@mogulmama](https://forum.livingwitheagle.org/u/mogulmama)\ **Replies:** 14\ **Last updated:** [October 20, 2026, 9:13pm UTC](https://forum.livingwitheagle.org/t/fears-about-surgery/24653 "2026-10-20T21:13:17Z")
My daughter is scheduled for the BTO Venogram with Dr. Patsalides next month, and is hoping to have surgery with Dr. Costantino shortly thereafter. She is in very bad shape and has been waiting for this surgery for years… --- ## [Dr. Bolognese](https://forum.livingwitheagle.org/t/dr-bolognese/24694)
**Author:** [@k.p.c](https://forum.livingwitheagle.org/u/k.p.c)\ **Replies:** 1\ **Last updated:** [October 20, 2026, 8:37pm UTC](https://forum.livingwitheagle.org/t/dr-bolognese/24694 "2026-10-20T20:37:21Z")
Hi- if anyone here also has CCI or EDS you may have heard of Dr. Paulo A Bolognese. I was curious to see if anyone knew of him for ES? I was on his website and he mentions it as one of his areas of expertise in his bio. … --- ## [Surgery next week with costantino](https://forum.livingwitheagle.org/t/surgery-next-week-with-costantino/24663)
**Author:** [@Acliff](https://forum.livingwitheagle.org/u/Acliff)\ **Replies:** 6\ **Last updated:** [October 20, 2026, 3:19pm UTC](https://forum.livingwitheagle.org/t/surgery-next-week-with-costantino/24663 "2026-10-20T15:19:33Z")
I have not been on this site in a while. But spent a lot of time on here the first few months after my husband’s Eagle’s Syndrome diagnosis last November.. However mixed into our early understanding was an increased real… --- ## [1 Week Post Surgery Update](https://forum.livingwitheagle.org/t/1-week-post-surgery-update/16363)
**Author:** [@vap](https://forum.livingwitheagle.org/u/vap)\ **Replies:** 8\ **Last updated:** [October 20, 2026, 3:16pm UTC](https://forum.livingwitheagle.org/t/1-week-post-surgery-update/16363 "2026-10-20T15:16:00Z")
Hello all, I just wanted to provide an update regarding my surgery with Drs. Costantino & Tobias on 6/3/24. I am currently at home in VA continuing to recover. According to Dr. C., my surgery was a challenging one bec… --- ## [Associated Possible Symptoms Left Side of Neck (mostly failed hyoid bone syndrome surgery)](https://forum.livingwitheagle.org/t/associated-possible-symptoms-left-side-of-neck-mostly-failed-hyoid-bone-syndrome-surgery/24293)
**Author:** [@asm8ax](https://forum.livingwitheagle.org/u/asm8ax)\ **Replies:** 30\ **Last updated:** [October 20, 2026, 2:47pm UTC](https://forum.livingwitheagle.org/t/associated-possible-symptoms-left-side-of-neck-mostly-failed-hyoid-bone-syndrome-surgery/24293 "2026-10-20T14:47:05Z")
Hi guys! For context I have the following conditions: heds (8/9 beighton), POTS (confirmed via tilt table), had hyoid bone syndrome in my neck (had surgery - they trimmed both sides. I would say it helped - especially m… --- ## [New and so desperate for answers](https://forum.livingwitheagle.org/t/new-and-so-desperate-for-answers/24677)
**Author:** [@HanaasMama](https://forum.livingwitheagle.org/u/HanaasMama)\ **Replies:** 7\ **Last updated:** [October 20, 2026, 2:39pm UTC](https://forum.livingwitheagle.org/t/new-and-so-desperate-for-answers/24677 "2026-10-20T14:39:30Z")
Hi Everyone, My name is Kelly. I’m a 39 year old mom in Massachusetts. I have my first appointment to see Dr Annino in Boston Next week. I am desperate. I have a hard medical history the past few years. 3 years ago symp… --- ## [5 months after Eagle syndrome surgery](https://forum.livingwitheagle.org/t/5-months-after-eagle-syndrome-surgery/24689)
**Author:** [@GalinaGutak](https://forum.livingwitheagle.org/u/GalinaGutak)\ **Replies:** 3\ **Last updated:** [October 20, 2026, 2:26pm UTC](https://forum.livingwitheagle.org/t/5-months-after-eagle-syndrome-surgery/24689 "2026-10-20T14:26:20Z")
Hi everyone! I wanted to share an update on my recovery, as it has now been exactly five months since my surgery. I had my surgery in May in Istanbul with Dr. Kamran Aghayev for Eagle syndrome and internal jugular vein … --- ## [Does It Look Like I Have Internal Jugular Vein (IJV) Stenosis?](https://forum.livingwitheagle.org/t/does-it-look-like-i-have-internal-jugular-vein-ijv-stenosis/24669)
**Author:** [@Leeseungmin](https://forum.livingwitheagle.org/u/Leeseungmin)\ **Replies:** 12\ **Last updated:** [October 20, 2026, 9:37am UTC](https://forum.livingwitheagle.org/t/does-it-look-like-i-have-internal-jugular-vein-ijv-stenosis/24669 "2026-10-20T09:37:42Z")
Yesterday, I had a head and neck CTA scan. The official radiology report is not available yet, but I obtained the CTA images and reviewed them myself. Could you please take a look at my CTA images and share your thoughts… --- ## [CTA scans](https://forum.livingwitheagle.org/t/cta-scans/24468)
**Author:** [@Hopee](https://forum.livingwitheagle.org/u/Hopee)\ **Replies:** 16\ **Last updated:** [October 19, 2026, 11:33pm UTC](https://forum.livingwitheagle.org/t/cta-scans/24468 "2026-10-19T23:33:36Z")
Hello all I just got my CTA files, can anyone help me analyse them? --- ## [Update, questions on TOS](https://forum.livingwitheagle.org/t/update-questions-on-tos/24648)
**Author:** [@kiwi](https://forum.livingwitheagle.org/u/kiwi)\ **Replies:** 10\ **Last updated:** [October 19, 2026, 1:56pm UTC](https://forum.livingwitheagle.org/t/update-questions-on-tos/24648 "2026-10-19T13:56:28Z")
I’ve been experiencing symptoms for almost 4 years now, got diagnosed with jugular compression in June by Dr. C, got other opinions from Dr. Annino and most recently Dr. Liu. Each recommend jugular decompression. A littl… --- ## [Bilateral IJVs compression by C1 TPs](https://forum.livingwitheagle.org/t/bilateral-ijvs-compression-by-c1-tps/24672)
**Author:** [@nemo](https://forum.livingwitheagle.org/u/nemo)\ **Replies:** 5\ **Last updated:** [October 19, 2026, 1:41pm UTC](https://forum.livingwitheagle.org/t/bilateral-ijvs-compression-by-c1-tps/24672 "2026-10-19T13:41:27Z")
I’ve read a lot about Eagle syndrome, specifically jugular Eagle syndrome and the variant involving IJV compression by the C1 transverse processes. Most of us seem to go for a long time without symptoms and then, all of … --- ## [Survival Tips](https://forum.livingwitheagle.org/t/survival-tips/24674)
**Author:** [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Replies:** 0\ **Last updated:** [October 19, 2026, 5:58am UTC](https://forum.livingwitheagle.org/t/survival-tips/24674 "2026-10-19T05:58:25Z")
Let’s encourage each other! @Janine1972 suggested we start a post where people can write about survival tips they find or found helpful during the in between periods that occur once symptoms onset i.e. between symptoms … --- ## [Meds for vascular eagles](https://forum.livingwitheagle.org/t/meds-for-vascular-eagles/24643)
**Author:** [@terit88](https://forum.livingwitheagle.org/u/terit88)\ **Replies:** 15\ **Last updated:** [October 19, 2026, 5:53am UTC](https://forum.livingwitheagle.org/t/meds-for-vascular-eagles/24643 "2026-10-19T05:53:32Z")
I have been recently diagnosed with vascular eagles after suffering for over 15 years. My neurologist is referring me to a vascular doctor first and does recommended surgery. I asked if there was any medication she can g… --- ## [Vascular priority among surgeons](https://forum.livingwitheagle.org/t/vascular-priority-among-surgeons/24575)
**Author:** [@contactsiri](https://forum.livingwitheagle.org/u/contactsiri)\ **Replies:** 49\ **Last updated:** [October 19, 2026, 4:42am UTC](https://forum.livingwitheagle.org/t/vascular-priority-among-surgeons/24575 "2026-10-19T04:42:31Z")
Hello All, I’m researching surgeons and it seems that I don’t see ones focused on the neural aspect of an elongated styloid. The bios I read focus on vascular compression. Im in Washington DC and researching all of the p… --- ## [Upcoming surgery- Nakaji- But I’m better!](https://forum.livingwitheagle.org/t/upcoming-surgery-nakaji-but-i-m-better/21950)
**Author:** [@Luckee7](https://forum.livingwitheagle.org/u/Luckee7)\ **Replies:** 8\ **Last updated:** [October 18, 2026, 2:08pm UTC](https://forum.livingwitheagle.org/t/upcoming-surgery-nakaji-but-i-m-better/21950 "2026-10-18T14:08:00Z")
I am scheduled for surgery next week with Dr. Nakaji for non-dominant left side styloidectomy, and transverse process shave. Unlike many of you, I have not spoke to Dr. Nakaji. So no consults. I was just scheduled for s… --- ## [I officially have my appointment with Dr. James Liu](https://forum.livingwitheagle.org/t/i-officially-have-my-appointment-with-dr-james-liu/22869)
**Author:** [@Emmaann](https://forum.livingwitheagle.org/u/Emmaann)\ **Replies:** 32\ **Last updated:** [October 17, 2026, 7:34pm UTC](https://forum.livingwitheagle.org/t/i-officially-have-my-appointment-with-dr-james-liu/22869 "2026-10-17T19:34:07Z")
Hi everyone! I just wanted to post an update that I have my consult with Dr. James K. Liu in New Jersey! I am being seen 4/28 @ 2:30! I’m very excited to officially have my next step in place. Now I pray he agrees to do … --- ## [Rapid onsetof symptoms](https://forum.livingwitheagle.org/t/rapid-onsetof-symptoms/24658)
**Author:** [@morty461](https://forum.livingwitheagle.org/u/morty461)\ **Replies:** 8\ **Last updated:** [October 17, 2026, 2:33pm UTC](https://forum.livingwitheagle.org/t/rapid-onsetof-symptoms/24658 "2026-10-17T14:33:02Z")
Hello. My Name is Maria and I live in Texas. I found this forum after dealing with this issue for a little over a month. For years I have had odd little sensations and feelings in my jaw neck and face. This started with… --- ## [Clicking in ears](https://forum.livingwitheagle.org/t/clicking-in-ears/24661)
**Author:** [@Anita](https://forum.livingwitheagle.org/u/Anita)\ **Replies:** 5\ **Last updated:** [October 16, 2026, 3:59pm UTC](https://forum.livingwitheagle.org/t/clicking-in-ears/24661 "2026-10-16T15:59:43Z")
Hi, does anyone get clicking in the ears after surgery? --- ## [Post on lymph drainage/ massage?](https://forum.livingwitheagle.org/t/post-on-lymph-drainage-massage/24652)
**Author:** [@deenadani](https://forum.livingwitheagle.org/u/deenadani)\ **Replies:** 5\ **Last updated:** [October 16, 2026, 6:39am UTC](https://forum.livingwitheagle.org/t/post-on-lymph-drainage-massage/24652 "2026-10-16T06:39:54Z")
Hi all, I am having whooshing in my ears, feeling like glands are swollen and I know I saw a post about ways to reduce this but can’t find it. Any suggestions or tips would be helpful. I am using heat on my neck and ta… --- ## [My experience with Dr. Aghayev](https://forum.livingwitheagle.org/t/my-experience-with-dr-aghayev/24623)
**Author:** [@contactsiri](https://forum.livingwitheagle.org/u/contactsiri)\ **Replies:** 4\ **Last updated:** [October 16, 2026, 6:20am UTC](https://forum.livingwitheagle.org/t/my-experience-with-dr-aghayev/24623 "2026-10-16T06:20:36Z")
I had a free consultation last week with Dr. Aghayev. I sent him my CT neck venogram, CT head angiogram, CT cervical spine that shows my elongated styloid, and a spine x-ray. I appreciate his time and understand he is re… --- ## [Got a first X ray with calcified styloid process, need ur help](https://forum.livingwitheagle.org/t/got-a-first-x-ray-with-calcified-styloid-process-need-ur-help/23416)
**Author:** [@junonbss](https://forum.livingwitheagle.org/u/junonbss)\ **Replies:** 130\ **Last updated:** [October 16, 2026, 5:37am UTC](https://forum.livingwitheagle.org/t/got-a-first-x-ray-with-calcified-styloid-process-need-ur-help/23416 "2026-10-16T05:37:08Z")
Hello everyone, I’m a 28-year-old woman from France, and I’m looking for advice because my dentist recently suspected Eagle syndrome after reviewing my panoramic X-ray. He found a calcified left stylohyoid ligament and … --- ## [Typing Support](https://forum.livingwitheagle.org/t/typing-support/24624)
**Author:** [@contactsiri](https://forum.livingwitheagle.org/u/contactsiri)\ **Replies:** 4\ **Last updated:** [October 15, 2026, 9:29pm UTC](https://forum.livingwitheagle.org/t/typing-support/24624 "2026-10-15T21:29:07Z")
Does anyone know of patient advocates or support services willing to do typing support for a fee? Because I’m bedridden, I’m doing everything from my phone from doctor’s appointments and insurance matters to my full-time… --- ## [Updated Scan for Input - Previous Post on Left Side of Neck Symptoms](https://forum.livingwitheagle.org/t/updated-scan-for-input-previous-post-on-left-side-of-neck-symptoms/24633)
**Author:** [@asm8ax](https://forum.livingwitheagle.org/u/asm8ax)\ **Replies:** 2\ **Last updated:** [October 15, 2026, 9:04pm UTC](https://forum.livingwitheagle.org/t/updated-scan-for-input-previous-post-on-left-side-of-neck-symptoms/24633 "2026-10-15T21:04:55Z")
Hi all. I previously posted some 3D slicer images from an older scan prior to my hyoid bone syndrome surgery. I recently had a new CTA neck and the anonymized dicoms are here: dicom-anonymized-2026-10-13 - Google Drive I… --- ## [Tips for viewing scans](https://forum.livingwitheagle.org/t/tips-for-viewing-scans/24138)
**Author:** [@Jammit](https://forum.livingwitheagle.org/u/Jammit)\ **Replies:** 26\ **Last updated:** [October 15, 2026, 2:18pm UTC](https://forum.livingwitheagle.org/t/tips-for-viewing-scans/24138 "2026-10-15T14:18:48Z")
Hi all, I am EDS patient with longstanding facial pain and a recent neck injury from manual therapy. I can’t look up and have pulsatile tinnitus on the right side. I have my CT and CTV SCANS, but my doctor did not ask t… --- ## [Vagus nerve causing nausea and insomnia](https://forum.livingwitheagle.org/t/vagus-nerve-causing-nausea-and-insomnia/24636)
**Author:** [@Wendyfuchsslp](https://forum.livingwitheagle.org/u/Wendyfuchsslp)\ **Replies:** 3\ **Last updated:** [October 15, 2026, 12:14pm UTC](https://forum.livingwitheagle.org/t/vagus-nerve-causing-nausea-and-insomnia/24636 "2026-10-15T12:14:40Z")
I wonder does anyone else have sudden onset of insomnia? I am practically narcoleptic. But since temporary medial branch block procedure last week I have been miserable. The lidocaine solution was supposed to wear off in… --- ## [Compression of the two IJV and unsuccessful surgery in Russia](https://forum.livingwitheagle.org/t/compression-of-the-two-ijv-and-unsuccessful-surgery-in-russia/23637)
**Author:** [@anon30378544](https://forum.livingwitheagle.org/u/anon30378544)\ **Replies:** 125\ **Last updated:** [October 14, 2026, 8:46pm UTC](https://forum.livingwitheagle.org/t/compression-of-the-two-ijv-and-unsuccessful-surgery-in-russia/23637 "2026-10-14T20:46:56Z")
Good afternoon, friends! My name is Egor, I am from Russia, I am 38 years old. For many years, I have been suffering from serious health problems, which, as I already believe, are related to compression of the two inter… --- ## [Go fund me eagle syndrome](https://forum.livingwitheagle.org/t/go-fund-me-eagle-syndrome/22997)
**Author:** [@Getmused](https://forum.livingwitheagle.org/u/Getmused)\ **Replies:** 4\ **Last updated:** [October 13, 2026, 2:30pm UTC](https://forum.livingwitheagle.org/t/go-fund-me-eagle-syndrome/22997 "2026-10-13T14:30:26Z")
Has anyone tried this or know of anyone who has started go fund me for rare and weird medical conditions? I feel awkward even thinking this but I just don’t know what to do anymore. --- ## [12 week Post op update](https://forum.livingwitheagle.org/t/12-week-post-op-update/24073)
**Author:** [@Bcats0318](https://forum.livingwitheagle.org/u/Bcats0318)\ **Replies:** 12\ **Last updated:** [October 13, 2026, 7:06am UTC](https://forum.livingwitheagle.org/t/12-week-post-op-update/24073 "2026-10-13T07:06:29Z")
Hello all. 12 weeks (this past Wed) since my left transcervical styloidectomy. I have conflicting feelings… the styloidectomy did help resolve the pain i had from the errant SP and i’m so grateful for that, but i’ve trad… --- ## [Caution With Neck and TOS Exercises Before Surgery, Even With Medical Professionals' Recommendations](https://forum.livingwitheagle.org/t/caution-with-neck-and-tos-exercises-before-surgery-even-with-medical-professionals-recommendations/24622)
**Author:** [@Bowser](https://forum.livingwitheagle.org/u/Bowser)\ **Replies:** 7\ **Last updated:** [October 13, 2026, 5:37am UTC](https://forum.livingwitheagle.org/t/caution-with-neck-and-tos-exercises-before-surgery-even-with-medical-professionals-recommendations/24622 "2026-10-13T05:37:45Z")
Hello. It’s been a while since I posted here. I will post more details about my particular case here at a later time. I plan to make a very detailed post regarding everything sometime in the future. For now, suffice it… [Next page](https://forum.livingwitheagle.org/c/general/8.md?page=1)