# Blog **URL:** https://forum.livingwitheagle.org/c/general/blog/5.md?page=1 [Latest](https://forum.livingwitheagle.org/latest.md) · [Categories](https://forum.livingwitheagle.org/categories.md) · [Tags](https://forum.livingwitheagle.org/tags.md) **Page:** 2 --- ## [Surgery Scheduled](https://forum.livingwitheagle.org/t/surgery-scheduled/1187)
**Author:** [@SweetC](https://forum.livingwitheagle.org/u/SweetC)\ **Replies:** 2\ **Last updated:** [March 14, 2020, 12:25am UTC](https://forum.livingwitheagle.org/t/surgery-scheduled/1187 "2020-03-14T00:25:00Z")
My surgery is scheduled for next week, July 3rd! I'm excited and nervous all at the same time..Ill update after! --- ## [Surgery performed by 3 surgeons,ENT, VASCULAR and NUEROLOGIST](https://forum.livingwitheagle.org/t/surgery-performed-by-3-surgeons-ent-vascular-and-nuerologist/1109)
**Author:** [@Jan](https://forum.livingwitheagle.org/u/Jan)\ **Replies:** 4\ **Last updated:** [July 1, 2019, 3:05pm UTC](https://forum.livingwitheagle.org/t/surgery-performed-by-3-surgeons-ent-vascular-and-nuerologist/1109 "2019-07-01T15:05:23Z")
I have read somewhere on site that someone had their eagles bone removed by having: ENT surgeon to deal with calcified bone : vascular surgeon to deal with artery and nuerologist to deal with the main nerves involved. T… --- ## [Still alive and still in serious pain](https://forum.livingwitheagle.org/t/still-alive-and-still-in-serious-pain/1191)
**Author:** [@ringblomman](https://forum.livingwitheagle.org/u/ringblomman)\ **Replies:** 5\ **Last updated:** [July 8, 2018, 12:01am UTC](https://forum.livingwitheagle.org/t/still-alive-and-still-in-serious-pain/1191 "2018-07-08T00:01:56Z")
I didn't get any help from the hospital in Sweden. I am still in pain. Sometomes unbearable. I can't do more than I've already did. The doctors don't help me, saying that the styloids are a little longer than common (I c… --- ## [Somethings not right!](https://forum.livingwitheagle.org/t/somethings-not-right/1190)
**Author:** [@Selaness80](https://forum.livingwitheagle.org/u/Selaness80)\ **Replies:** 8\ **Last updated:** [August 8, 2014, 4:28am UTC](https://forum.livingwitheagle.org/t/somethings-not-right/1190 "2014-08-08T04:28:41Z")
In November 2008 my Husband & I were in the kitchen he was making jokes as usual. I threw my head back while laughing & felt a really sharp pain behind where my tonsils were, that was the first time I felt that pain on t… --- ## [Eagle surgery (ext styloidectomy) soon](https://forum.livingwitheagle.org/t/eagle-surgery-ext-styloidectomy-soon/1189)
**Author:** [@Mare](https://forum.livingwitheagle.org/u/Mare)\ **Replies:** 6\ **Last updated:** [July 21, 2014, 5:55am UTC](https://forum.livingwitheagle.org/t/eagle-surgery-ext-styloidectomy-soon/1189 "2014-07-21T05:55:31Z")
Hi. I'm having external approach to remove the styloid and the calcified ligaments on 7-22-14. What can I expect post op? How much pain? For how long? Difficulty eating? How long before able to move neck again? Return to… --- ## [Post surgical lump 8 months out](https://forum.livingwitheagle.org/t/post-surgical-lump-8-months-out/1185)
**Author:** [@Dizzy55313](https://forum.livingwitheagle.org/u/Dizzy55313)\ **Replies:** 3\ **Last updated:** [June 23, 2014, 5:57pm UTC](https://forum.livingwitheagle.org/t/post-surgical-lump-8-months-out/1185 "2014-06-23T17:57:14Z")
Does anybody else have a lump in the back of their throat post surgery? Size of a hazelnut. Food and pills rubbing. All preoperative symptoms are back. Denture on bottom for one month since teeth pulled presurgery. --- ## [Flare ups](https://forum.livingwitheagle.org/t/flare-ups/1183)
**Author:** [@terri](https://forum.livingwitheagle.org/u/terri)\ **Replies:** 2\ **Last updated:** [May 28, 2014, 8:57pm UTC](https://forum.livingwitheagle.org/t/flare-ups/1183 "2014-05-28T20:57:06Z")
I was curious to hear if others have some so called " flare ups". Some days I feel more swollen and a choking ie... Foreign matter in my neck pressing in my throat. Feeling helpless --- ## [Another bad day](https://forum.livingwitheagle.org/t/another-bad-day/1069)
**Author:** [@terri](https://forum.livingwitheagle.org/u/terri)\ **Replies:** 4\ **Last updated:** [May 17, 2014, 2:37pm UTC](https://forum.livingwitheagle.org/t/another-bad-day/1069 "2014-05-17T14:37:59Z")
I wish this pain would go away so fustrated.... I feel I am going out of my mind --- ## [Five month post operative](https://forum.livingwitheagle.org/t/five-month-post-operative/1181)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 6\ **Last updated:** [April 3, 2014, 11:05pm UTC](https://forum.livingwitheagle.org/t/five-month-post-operative/1181 "2014-04-03T23:05:19Z")
I think my fellow Eagle Syndrome friends deserve to know the progress I made since having surgery. I am very happy with the outcome to say the least. I honestly can’t complain about the little pain and discomfort I exp… --- ## [If it's ES you can't turn the neck? Follow up tomorrow, please help :)](https://forum.livingwitheagle.org/t/if-its-es-you-cant-turn-the-neck-follow-up-tomorrow-please-help/1180)
**Author:** [@Julie9536](https://forum.livingwitheagle.org/u/Julie9536)\ **Replies:** 8\ **Last updated:** [April 3, 2014, 12:45am UTC](https://forum.livingwitheagle.org/t/if-its-es-you-cant-turn-the-neck-follow-up-tomorrow-please-help/1180 "2014-04-03T00:45:47Z")
Hi there, new dr I saw last week said again "definitely not ES, because it it was I would not be able to even turn my neck the way that I can," which is basically normally. I am doubting this. Any thoughts? --- ## [A quick update](https://forum.livingwitheagle.org/t/a-quick-update/1179)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 4\ **Last updated:** [March 7, 2014, 5:14pm UTC](https://forum.livingwitheagle.org/t/a-quick-update/1179 "2014-03-07T17:14:59Z")
Hi all! Its been 4 months since surgery, I feel awesome! Still tinnitus but hardly ever pain. Please feel free to email me directly on Eloisetablet@gmail.com as I do experience problems on this web page. I also work 5 da… --- ## [Getting more down](https://forum.livingwitheagle.org/t/getting-more-down/1173)
**Author:** [@purple\_girl](https://forum.livingwitheagle.org/u/purple_girl)\ **Replies:** 3\ **Last updated:** [February 25, 2014, 12:20pm UTC](https://forum.livingwitheagle.org/t/getting-more-down/1173 "2014-02-25T12:20:25Z")
called the footscray hospital today they cant yet tell me when ill get me appointment to see a neuro surgeon :-( after the past few weeks here in melbourne with high windstrying to protect me ears didnt do much , the diz… --- ## [Best imaging for ES](https://forum.livingwitheagle.org/t/best-imaging-for-es/1166)
**Author:** [@Wellington90](https://forum.livingwitheagle.org/u/Wellington90)\ **Replies:** 2\ **Last updated:** [February 22, 2014, 4:27am UTC](https://forum.livingwitheagle.org/t/best-imaging-for-es/1166 "2014-02-22T04:27:46Z")
I have had a CT with contrast and my doctor said it didn't look like my styloid was elongated. Is there a better imaging test or view I should request? Also, if I was to point to my tonsil and touch it, exactly where … --- ## [Friday the 13th](https://forum.livingwitheagle.org/t/friday-the-13th/1171)
**Author:** [@purple\_girl](https://forum.livingwitheagle.org/u/purple_girl)\ **Replies:** 1\ **Last updated:** [February 9, 2014, 4:54am UTC](https://forum.livingwitheagle.org/t/friday-the-13th/1171 "2014-02-09T04:54:32Z")
I called up the hospital today as RB had suggested to find out if I can be put on their surgery cancelation list, now since june the 23th ive called 4-5 times up until today and have asked why is it 32 months wait for m… --- ## [Compression Symptoms](https://forum.livingwitheagle.org/t/compression-symptoms/1176)
**Author:** [@lizajane](https://forum.livingwitheagle.org/u/lizajane)\ **Replies:** 5\ **Last updated:** [January 9, 2014, 3:52am UTC](https://forum.livingwitheagle.org/t/compression-symptoms/1176 "2014-01-09T03:52:47Z")
I have seen the term "Compression Symptoms" and I am wondering if anyone can elaborate as to what they are. I'm still waiting in the wings for surgery and symptoms keep getting worse. I have started feeling a sensation l… --- ## [We Need Your Help This Holiday Season](https://forum.livingwitheagle.org/t/we-need-your-help-this-holiday-season/1177)
**Author:** [@Ben\_Munoz](https://forum.livingwitheagle.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [December 6, 2013, 4:43pm UTC](https://forum.livingwitheagle.org/t/we-need-your-help-this-holiday-season/1177 "2013-12-06T16:43:33Z")
https://www.youtube.com/watch?v=Modd1qRw8dM Dear Eagle friends, As the year ends, I reflect on how far we have come helping patients with rare conditions and contemplate on how to further our impact in their lives. It’s… --- ## [First post operative update :)](https://forum.livingwitheagle.org/t/first-post-operative-update/1174)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 4\ **Last updated:** [November 22, 2013, 7:45am UTC](https://forum.livingwitheagle.org/t/first-post-operative-update/1174 "2013-11-22T07:45:00Z")
I know most of you are eager to hear how my surgery went, so here goes… Today is day forth post operatively. I feel remarkably ‘well’, my right ear aches a little and so does my throat. I also experience pain swallowi… --- ## [Just over three weeks post operative!](https://forum.livingwitheagle.org/t/just-over-three-weeks-post-operative/1175)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 1\ **Last updated:** [October 31, 2013, 10:37pm UTC](https://forum.livingwitheagle.org/t/just-over-three-weeks-post-operative/1175 "2013-10-31T22:37:44Z")
Hello Fellow Eagle's Just a quick update again. I started working again so my time is a bit limited. Despite a bit of discomfort where the surgery was, I feel great! My surgery was a huge success despite that it was ma… --- ## [Surgery brought forward to October 4th!](https://forum.livingwitheagle.org/t/surgery-brought-forward-to-october-4th/1172)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 3\ **Last updated:** [October 3, 2013, 9:37am UTC](https://forum.livingwitheagle.org/t/surgery-brought-forward-to-october-4th/1172 "2013-10-03T09:37:05Z")
Dr Sam's rooms called me and said he will be in conference on the 18th so they are moving my surgery to the 4th! I was totally caught off guard but later realized my prayers were answered! My ear ache have never been so… --- ## [Surgery scheduled for October 18th.... eeeek!](https://forum.livingwitheagle.org/t/surgery-scheduled-for-october-18th-eeeek/1170)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 5\ **Last updated:** [September 21, 2013, 4:24am UTC](https://forum.livingwitheagle.org/t/surgery-scheduled-for-october-18th-eeeek/1170 "2013-09-21T04:24:40Z")
Hello fellow Eagle Friends! I feel relieved and terrified at the same time…. I am sure it sounds familiar! My surgery is scheduled for October 18th ! (The right side first) Just a quick recap: I saw Dr Sam last Wednesda… --- ## [Post Surgery Update:](https://forum.livingwitheagle.org/t/post-surgery-update/1168)
**Author:** [@diva12688](https://forum.livingwitheagle.org/u/diva12688)\ **Replies:** 1\ **Last updated:** [September 12, 2013, 5:21pm UTC](https://forum.livingwitheagle.org/t/post-surgery-update/1168 "2013-09-12T17:21:37Z")
I had surgery on July 31, 2013. My doctor took pictures of my eagle syndrome I will post those soon. After surgery I was sick for about 2 days straight throwing up blood non stop. My recovery was 2 weeks of hell. I could… --- ## [I dont know what to do](https://forum.livingwitheagle.org/t/i-dont-know-what-to-do/1169)
**Author:** [@purple\_girl](https://forum.livingwitheagle.org/u/purple_girl)\ **Replies:** 4\ **Last updated:** [September 12, 2013, 11:27am UTC](https://forum.livingwitheagle.org/t/i-dont-know-what-to-do/1169 "2013-09-12T11:27:37Z")
im getting to the stage where im sick to death of quite afew people I work with I don't know if you'd call it putting me down or made fun of, our uniform at work is neat casual and we wear a work vest , I wear a hooded j… --- ## [RB's Surgery Recovery Journal](https://forum.livingwitheagle.org/t/rbs-surgery-recovery-journal/1163)
**Author:** [@R.B](https://forum.livingwitheagle.org/u/R.B)\ **Replies:** 1\ **Last updated:** [September 7, 2013, 9:49pm UTC](https://forum.livingwitheagle.org/t/rbs-surgery-recovery-journal/1163 "2013-09-07T21:49:25Z")
Day 1. Right sided external styloidectomy. I am home, groggy and sore. My right ear, neck and jaw line are a bit numb to the toutch. My smile is not crooked as of now, I hope it stays that way. The crunchy grinding soun… --- ## [Living with the pain, any tips?](https://forum.livingwitheagle.org/t/living-with-the-pain-any-tips/1167)
**Author:** [@tdunc](https://forum.livingwitheagle.org/u/tdunc)\ **Replies:** 0\ **Last updated:** [August 30, 2013, 4:16pm UTC](https://forum.livingwitheagle.org/t/living-with-the-pain-any-tips/1167 "2013-08-30T16:16:44Z")
Dr Sanji in San Jose CA said my Styloid bones are 44 long twice as long as they should be. So sounds like I do have this. He said he has done 25 surgeries at 80% success rate, with long term patients not having as much s… --- ## [New doctor's appointment tomorrow](https://forum.livingwitheagle.org/t/new-doctors-appointment-tomorrow/1165)
**Author:** [@ringblomman](https://forum.livingwitheagle.org/u/ringblomman)\ **Replies:** 4\ **Last updated:** [August 23, 2013, 2:05am UTC](https://forum.livingwitheagle.org/t/new-doctors-appointment-tomorrow/1165 "2013-08-23T02:05:14Z")
Tomorrow I will be meeting a new doctor at Karolinska Hospital in Sweden. This time a younger female doc. I hope she takes the time to listen to my problems. None of the doctors I have met cares that I have a diagnosis… --- ## [ES, GN or cancer symptoms](https://forum.livingwitheagle.org/t/es-gn-or-cancer-symptoms/1164)
**Author:** [@Wellington90](https://forum.livingwitheagle.org/u/Wellington90)\ **Replies:** 10\ **Last updated:** [August 19, 2013, 7:22am UTC](https://forum.livingwitheagle.org/t/es-gn-or-cancer-symptoms/1164 "2013-08-19T07:22:47Z")
Hello, Let me introduce myself. My name is Nikki and I'm 41 years old. I'm glad to be on this forum and desperately looking for help. My history: Six months ago I had a terrible sinus infections with a horrible sore th… --- ## [Scott's Bio](https://forum.livingwitheagle.org/t/scotts-bio/1083)
**Author:** [@Scott\_O](https://forum.livingwitheagle.org/u/Scott_O)\ **Replies:** 6\ **Last updated:** [August 17, 2013, 6:40am UTC](https://forum.livingwitheagle.org/t/scotts-bio/1083 "2013-08-17T06:40:22Z")
I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful … --- ## [Finally diagnosed but still in pain](https://forum.livingwitheagle.org/t/finally-diagnosed-but-still-in-pain/1145)
**Author:** [@ringblomman](https://forum.livingwitheagle.org/u/ringblomman)\ **Replies:** 6\ **Last updated:** [August 5, 2013, 5:22pm UTC](https://forum.livingwitheagle.org/t/finally-diagnosed-but-still-in-pain/1145 "2013-08-05T17:22:36Z")
It is driving me nuts and I get a little bit scared about the styloid pressing on my tonsil area. It hurts a lot. Become worse since a medical examination about a month ago. I try to live my daily live but it is really … --- ## [31 months left](https://forum.livingwitheagle.org/t/31-months-left/1162)
**Author:** [@purple\_girl](https://forum.livingwitheagle.org/u/purple_girl)\ **Replies:** 3\ **Last updated:** [August 5, 2013, 9:58am UTC](https://forum.livingwitheagle.org/t/31-months-left/1162 "2013-08-05T09:58:05Z")
what am i going to do 31 months left to go on the geelong hospital waiting list :-( i got the letter last month ive made acouple of calls to them im on the semi urgent list, in the past 24 hours ive had 4 hours of broke… --- ## [One step forward!](https://forum.livingwitheagle.org/t/one-step-forward/1160)
**Author:** [@Bubbles](https://forum.livingwitheagle.org/u/Bubbles)\ **Replies:** 5\ **Last updated:** [August 3, 2013, 7:06am UTC](https://forum.livingwitheagle.org/t/one-step-forward/1160 "2013-08-03T07:06:05Z")
After days of agony and anxiety I finally found and saw the "right" Specialist! I can't believe I am another step closer! I feel so relieved. After facing so many closed doors - so few are aware of Eagles Syndrome. (I g… [Previous page](https://forum.livingwitheagle.org/c/general/blog/5.md) [Next page](https://forum.livingwitheagle.org/c/general/blog/5.md?page=2)