Hi Everyone. I wanted to make one journal post of my eagles experience which i will add to it as time goes on. My journey began in october 2016 i had a ton of life stressors in a short time…seperated from my husband, 3 friends died, my 2 pets died, my grandmother died, i was studying for my investment license at work(very difficult), lost pregnancy, struggling to support myself and live on my own. One day my jaw began clicking. I had severe jaw pain and clicking. I ignored it. Time went on…stomach issues began, headaches began, heart issues, tingling on face/head, muscle spasms in face, heard heartbeat in left ear, rashes, eye pain, ear pain. Everyday it was a new symptom. This went on for 2 years. Finally after many dr and er visits an LVI dentist diagnosed me… i had TMJ- both my joints were partially crushed with a displaced disc in my right tmj and i was fully calcified with bilateral vascular eagle syndrome.
-TMJ was cured with LVI dentist treatment with orthotics
SCANS I HAD:
-ctscan of head/neck
-ultrasound of neck
I had 2 external surgeries 3 months apart with dr cognetti. I travled and stayed in motel. June 2018 right side. Sept 2018 left side
Took me 2-3 weeks to recover and return to work. Left side was harder recovery than right. Left side i had some heart issues post op which calmed down about 1 month post op. (Very scary)
I am now 1 year post op. Main symptoms remaining:
-heartbeat in left ear
I do have symptoms pop up here and there. Like tingling, twitching, eye pain or throat pain on right side. When they come i panick wondering if it came back or what but then it goes away. This comes and goes. I will keep you all updated as time goes on. I read somewhere someone said 5yrs for symptoms to finally go away but ill let you all know
I have apt with a Dr Chen in CT to ask about heartbeat in left ear. Im working with Dr Larosa in CT for SIBO stomach issues (trying to get under control all naturally)
I wanted to let you know I also have had a very difficult struggle with finding answers. (I will post a new topic about me).
Like you, my pain began in May 2016. In addition, my life has been stressful with huge life changes.
I was not taken seriously, and still have trouble with some doctors. I was wondering how many specialists/ appointments you had to go through before finding answers. I also have physical jaw issues. The pain was agonizing, I was referred to a reputable pain center. I have been on opioids since December of 2016 with moderate- good results. Nerve medications have not been helpful, with the exception of gabapentin for a few symptoms.
Did you need pain medication? If so, how did you feel? Did you get the help you needed? (I have done extensive research into opioids - the percentage of patients who are prescribed pain medication with a good doctor are less likely to become addicts than the general population.)
Did you find an Orofacial/TMJ specialist?
I am so glad that you have had surgery and found some relief. If you would like to post anything more about the journey prior to your diagnosis, please do! It is amazing how lonely I have been.
I am so curious. Thank you for writing your story.
@Gwendolyn hi!!. Wow sounds like ur eagle journey began around same time as mine. Im not a fan of taking meds or anything. During my pain i took tylenol n muscle relaxers until i fixed my. Tmj n eagles. On nothing now only probiotics for my stomach. An LVI dentist fixed my tmj. You can look up LVI dentistry and see if there is one near you. I had to travel out of state. Tmj was fixed with an orthotic appliance (non surgical).
YOU ARE NOT ALONE. My story is very long but i tried to summarize it. I was a hypochondriac my whole life. But i never actually ever had any medical issues. So when i got this and didnt know what was wrong. I went thro tons of drs only to be told “nothing was wrong”. Noone believed me. Family. Friends. Coworkers. Doctors. Noone. My father and husband were about to check me into the looney bin. They told me i officially lost it and i wasnt listening to the drs that nothing was wrong. My primary dr just pushed anti depresents. Didnt run one test not one. All the visits he kept pushing anti depresents and would give me a hug. SMH. The ER would do brain scans n find nothing n tell me to see my primary. The neruologist said it was nerological and couldnt help me. The cardiologisr said i had a fast heart rate but EKG was fine so they said stress. The dentist told me TMJ would go away by itself when stress went away. The chiropractor almost killed me (i didnt know it was eagles) by manipulating my neck (pretty sure i almost had a stroke). The physical therapist just had me sit with hot rag on my neck. The ENT said eagles didnt cause symptoms all my issues were my TMJ and see my dentist. The cancer surgeon ENT specialist at the hospital said eagles didnt cause symptoms and they only remove it if it physically is seen poking through the back of your throat (which mine wasnt). The therapist told me i “didnt look sick” and didnt believe me either. The GI dr did tons of tests n colonoscopy n told me i had nothing wrong with me maybe IBS. This went in circles for a very long time. Until i travled out of state to an LVI dentist for my TMJ and they did a ctscan of head/neck n it found eagles. I had tons of brain scans prior which didnt pick up eagles. Once i knew what it was i still went in circles with drs trying to find help until i found this site n found cognetti. Im doing but better after both surgeries and i just been blessed with my first baby girl. Just wondering if remaining symptoms will ever go away and if the bones are gone whats causing them. I will post updates as time goes on. Have you had the surgery?? I am here if u need to talk. You are not alone. I literally lost all of my friends from this. I was at my best friends bachlorette party with all of our friends and i didnt know what was wrong i was so sick. Migrane. Naushis. Fast heart rate. I locked myself in the bathroom crying and having anxiety attack. They all thought i was nuts. So i have zero girlfriends now. But its ok i have my husband and little girl. I just cant talk about eagles to my family or anyone bc they dont understand n they get mad when i bring it up ( which i dont know why ).
So much of what you said is SO familiar. I hate drugs too. I feel like I am failing myself sometimes because I need relief.
Everything you describe, all the doctors, all the scans, being told it is in your head (technically, yes, haha). I did everything my pain doctor asked of me —-> pain psychologist, daily meditation, getting back to yoga, writing, taking courses that explain chronic pain, on and on.
No surgery yet, I have an Orofacial specialist who sounds similar to LVI, people fly in from everywhere to see him. I’ve missed so many birthdays, holidays, Gah.
Thank you for writing back and telling me more. It means a lot to me!
Hi, just wanted to say I am new to this site but I can relate to a lot of what you described. I’ve been having similar issues especially with tmj for well over a year and just recently was told about ES. I’m glad you are doing better post surgery.
I went through almost the same thing. I can tell you there is hope. I am 2 weeks post op. I had bilateral styloid process removal robotic ally internal to the skull and I feel amazing other than being very tired. Most symptoms gone. I hope it continues but I never imagined to feel this good this soon. I do have some pressure in my head as the swelling has to go done which they said to expect the first eight weeks while healing. But again there is hope. Just find an experience surgeon who is well trained and who has done several eagle surgery’s.
Oh my goodness, I have felt most of the things you have, had multiple tests duplicated and lost an entire set of ‘friends’ because they thought I was faking when I said I didn’t feel well enough to to participate in whatever activity they wanted me to participate in. Luckily I moved and was already symptomatic when I moved here so people only know me as I am now. I’ve been symptomatic so long I wonder what I will be like without the symptoms… As for heart symptoms have 90 resting heart rate, high BP (not resolved by BP meds), palpitations when laying down (not resolved by beta blockers), pronounced pulse in neck and heartbeat in ears. Every doctor except PC and gastro pushed me off to another specialist for last 20 years so I definitely understand your journey. So glad to hear of your new wonderful life. Please keep journaling… Your update made my day!
@DeeG wow im sorry uve been suffering for so long Did u find a surgeon yet? I highly recommend surgery by an experienced surgeon. Doing much better than i was so i am blessed. I really though i was going to drop dead before. Just remaining symptoms i hope eventually will calm down or go away. Stomach is my biggest issue right now. I feel for everyone who had to go thro this especially bc noone understands.
Hi. I’ve never blogged before, but since a friend recently found this forum for me, thought it was time to dive in. I’ve had ES symptoms for several years. They got bad enough that they forced me to see doctors (which I loathe to do) about three years ago. It has been a three year nightmare. One specialist passing me on to another, testing, poking prodding, a few minor surgeries, but mostly pontificating, then passing me on to someone else. (My symptoms- severe burning sensation in my lower throat and back of tongue, shortness of breath, fatigue - all tied together, when one got worse the others did at the same time.) By nothing short of a miracle, I was finally diagnosed with ES… bilateral elongated stoloids. I was recommended by a pain mgm center to a supposedly experienced surgeon. He did perform surgery on my left side in late Sept. He told me prior to surgery that it might not help with the pain, and was adamant that my breathing/fatigue symptoms had nothing to do with ES, though he had no explanation. Another miracle. Almost immediately after surgery my breathing/fatigue problems disappeared. When I told him this it upset him. He now has become hard to reach and through his nurse has said I don’t need surgery on the other side, and won’t give mea a reason for this. While the breathing improved dramatically post-op, the symptom pain has gone the other direction. It is much worse and almost continuous now. I have taken Lyrica which seems to help with the normal day to say management of pain. It’s not helping as much now. I would like to try pain killers, but can’t get any of these clowns to write me a script. I live in St. Louis city and we have a highly publicized “opioid crisis” going on here. All hospitals and Drs have been told to shut down writing opioid scripts due to liability. They all want to give me anti-depressants which I gave tried. Thanks to this forum I was guided to the preferred Doctors list and found one surgeon in the State if Missouri in the list. Fortunately he is near me and I have an appointment for dec 9th. I transferred my records from the previous surgeon (he is not a good human being, much less a dr.). If you want to know who not to go to in the City of STL, private email me and I’ll give you his name. Otherwise, the journey continues. The rest of my experience has been much like others have posted here. Doubt, skepticism, and incompetence from a lot of the medical community, and pain, just lots of pain. Btw…my stoloids were over 4 cm on each side. I’ve been told normal is 2-2.5 cm. Would be interested in any feedback anyone has to this post. Thank you
Ps: meant to tell you, for me the anti-depressants did not work. I also had one dr surgically implant a spinal stimulator for the pain. This was prior to the ES diagnosis. It also does not work and now needs to come out.
@Mark. Thank you for sharing!! Im sorry you had to go thro this. So many of us have similar stories. Drs do not understand eagles. Def get the other side out. N dont listen to these dopes pushing anti depressents. Ur not depressed, you have a serious medical issue. They did the same to me :(. Good luck with your new surgeon. Keep us updated!
It’s comforting to see other people have the heart issues!!! WHY can’t any dr’s believe we feel what we feel? I’m not mistaking the sensation of my pounding heat beat for anything else. And when I’m doing absolutely nothing, I know that isn’t normal!!! It keeps me awake at night bc it’s so annoying!
If they don’t find anything on a scan or ekg then we’re all crazy and must be making it up!!
I complained about hearing/feeling my pulse to an ENT. Had an MRI and bc it didn’t show an aneurysm, I was considered to be fine and there was nothing else to talk about. I’ve seen cardiologists and the same thing… they can’t figure it out so apparently it isn’t real. Ugh!!!
It sounds like you indeed have vascular ES though your heart rate issues could also be related to your vagus nerve being irritated by one or both styloids &/or calcified stylohyoid ligaments if you have them.
Have you looked at our doctors’ list to see if there’s anyone on it near you?
In case you haven’t, here’s the link to the list. There are two doctors from your state, but on the chance you’ve seen them & gotten no help, you may have to consider going out of state. The type of doctor you need to see is a skull based ENT, maxillofacial or neuro surgeon. These doctors are often cancer specialists who work in the area of the neck where the styloids are. If you’d like specific recommendations for doctors in states other than your own, please let me know & I’ll give you some names of reliable ES doctors who’ve done many ES surgeries.
Unfortunately, I’m not new to the countless dr’s. Even though I have the diagnosis, I continuously get blown off because well, I apparently don’t look sick!!! That’s when I have to explain just bc I took a shower and can look presentable on the outside to go out in public DOESN’T mean I’m not ready to jump off the nearest high bridge from the pain I’m in!!!
I wld very much like to travel elsewhere for better care but I currently have not been able to work in over a year as the ES issues continue to get worse and that causes more stress which exasperates several other health problems. ONE BIG VICIOUS CIRCLE😖 I am out of $ and my biggest concern is keeping a roof over my son’s head and trying to get back to being a productive human as I have a daughter who is becoming a commercial pilot and she needs help to get through school. She’s already working fulltime on top of fulltime classes and flight labs.
I just want to sleep😭 Night after night of the pain of different degrees, the pounding pulse and a million other things is way too overwhelming long term!
I have no support system other than my children. My family basically ignores me and thinks it’s just smthg that was going to go away and I hear comments… Well, she doesn’t look sick!!! UGH!!! That makes me furious. Not that any of them take the time to check in but they still have opinions. They really don’t want to see the actual pain, the times when I can barely get out of bed bc the vertigo is so bad or I can’t get up and leave my ice or heat packs that are wrapped around my neck bc it’s that tiny bit of relief that I need so desperately. I’m barely a shell of who I once was and I can’t stand it. This is not the mom I want my children to see or remember.
Idk what direction to even begin anymore, and the fatigue and brain fog is crazy! I’m more exhausted than when I was a young girl with mono.