Eagle Syndrome,Glossopharyngeal neuralgia,MVD surgery part 1

Just posted this to help people with eagles syndrome who havent had surgery or had surgery like me and still have symptoms,check out livingwitheagles.org or livingwithgpn.org Im a member of both im also gonna post my Mvd surgery which my surgeon is gonna post for me and my mvd results hope this helps.

[@Bargains20xx]

i just cannot say how much thankful i am for your video, exactly same symptoms at the exact same location you described and i do exactly the same things that you do.... I am now 99.9999% sure i have eagles

[@ARL1977]

We have the exact same story, pretty much. Same symptoms, mine started after the flu, same side. Put me on acid reflux, no help, antibiotics, no help. I had previous jaw surgery 20 years ago, so no one wants to believe it's anything other than TMJ, finally got a 3D cat scan and my TMJ joint is fine, my tonsils were already taken out. So I can feel and see the bone sticking me in the throat, it also swells it up and closes up my ear canal. It's going to suck to try to find out if this is what I have. IDK why the flu kicks this off, but I think it has something to do with all the coughing, and throat clearing, and it just moves it to start poking you in the ear and tonsil area. They even sent me to a rheumatologist saying I had RA, or Lupus or relapsing Polychondritis, but all that got ruled out. My lymph node hurts, it radiates down my neck and arm sometimes. I also had been rear ended 9 months ago and got super bad whiplash. I'm going to show my docs your video. I totally feel ya though, docs are sick of me coming in, and just want you to like live with some bad pain, like we don't know our own bodies. The right side of my jaw(the side that hurts) is also longer, like noticeably longer, so my jaw swings to the left a bit. Does the inside of your ear ever hurt? OR get jabbing pains inside of it like an icepick sticking you? Or did you get that pain prior to your surgery?

[@teakiepeak]

I saw your video and have had the same symptoms and nobody cares. I am having another procedure done to relieve my ear pain. All other symptoms I have controlled with exercise. Nobody listens to me and I am perfectly healthy but everyone thinks I too am crazy. I have had a post styloidectomy and it was misdiagnosed for 6 yrs. Finally someone cut my bone out that grew all the way from the base of my skull to my thyroid. Now I have residual pain and lived with odd types of pain as you do. I go for surgery for a neurectomy Feb 5 and it will be my final attempt to resolve all my pain.

[@barpaza]

If the surgery is done properly (cutting the bone) you should be symptom free as soon as you wake up. I had mine done in Virginia Fairfax done by doctor O'halloran he did this surgery in 15 minutes. I recuperated for about 30 days as they also had to remove my tonsils. The bottom line is to get the RIGHT image for your to show and proof that there IS. a bone inside. Can you touch it? If you can that is 50 percent of the battle won. Pay for your own images until someone can get to it.

[@hilliaryandreasen1752]

I was just diagnosed with Eagle's syndrome myself. Elongated styloid process. The pain is awful.. It's been only two years for me thank god, but I finally have my answer. Waiting for surgery dates and insurance approvals now. Thank you for sharing. Brought up some things I didnt think about.

[@MrApplewine]

4:00 Why do doctors say "you're fine" instead of "I can't help you"? I always found that strange. I'm thinking insecurity must be very common with doctors.

[@jettagliturbo]

Because they are morons

[@bonbondesel]

Huge ego and professional culture leading to deny the limitations of knowledge is also utterly common among doctors.

[@MrApplewine]

@@bonbondesel Cluster B individuals are highly attracted to the profession. They are addicted to lying and see themselves as all knowing.

[@MrApplewine]

@@bonbondesel They have Cluster B disorder.

[@MrApplewine]

@@bonbondesel Yes, that is it.

[@kerrid8392]

I really appreciate you sharing your journey. I turned my CT scans into 3D images and discovered that I have calcified styloid ligaments on both sides. (At the time of the CT, the only symptom I had was vertigo.. no facial neuralgia stuff like I have now). This is crazy though.. I cant imagine going years like this. I now have progressed to have all the symptoms you have described... just on one side. Trouble swallowing, burning and stinging sensation, constant pressure in my neck and jaw, now cramping in my neck and shoulder. Esophogeal spasms.)

[@mikegray3844]

I have been going through this exact same scenario for 3 years. 2 ENT, Oral Surgeon, Tonsils out, Rheumatologist, Intermal Med, Gastro Doc, etc. Dentist and ENT do think my Styloids are long. The feeling in throat just started 4 months ago and feels like a dry feeling and sometimes a lump feeling that will not go away. ENT has me on Prilosec but not helping. This is condition is ruining my life and taking a toll on my family.

[@lesliep9574]

Mike Gray what is your status now?

[@barpaza]

do not take Prilosec... get your MRI and CT with no contrast. If necessary go to another country.

[@59lizzz]

I just saw exray of "my fangs" andd all these years of pain and headachs thinking it was my head or sinuses. We use military health care now I am going to go to my internal med. And show them. What pisses me off is no one cared and now I got proof they had better take care of this our I plan to get Medical lawyer.

[@cadyd87]

I'm going through the same thing. Have been in so much pain for so long then all of sudden the pain increased ten fold. Went to various docs past 2 days and called but all refering me to others. Now waiting to see someone else that no one's knows if they can help while pain goes uncontrolled. Neuro just prescribed gabapentin tonight. Trying to remain hopeful but this is going to be a hassle. Thanks for the video though makes me feel like I'm not going crazy.

[@marisdsvega7919]

Como le fue con la gabapentina ??

[@jettagliturbo]

Ian, brother I am soo sorry you had to go through this, our medical system is beyond broken!! Your experience was exactly prove. I want to talk to you, add my Instagram or Facebook.

[@iandeleon4672]

Hey virgina posted a part 3 video with a closer view of the panoramic hope it helps you and others

[@sbusisomajola4268]

All the way from south africa, I've had this symptoms for 4yrs now been up and down trying to find solutions doctor told me it (eagle syndrome) painkillers are not working just tired of everything

[@OctopusVolcano]

You pretty much have the same symptoms and life stories me. I've been doing research on eagle syndrome and tmjd for over a decade. I'm in California as well. Let's meet up

[@jettagliturbo]

Bro, contact me!

[@virginialee5191]

Hi Deleon, I'm over at the eagles support group. This was very informative. One thing I would like to see the panoramic a bit closer/better????

[@teakiepeak]

Sorry I used my husbands sign up but I am a women and I to suffered with your pains. Your not crazy and my name is Debbie. I am a nurse and it was frustrating not to fix myself? Really...I understand what your going through.

[@ACIDGREENTECHNO]

what are/were your symtoms. do you have vertigo too? pre-syncope feelings? does your neck hurt? feeling like ants on your backhead - hair. water feeling in the ear? did you got CT with angio? how is your life today? all fixed?

[@charlesguero2003]

one way to get the 3d xray is this. The wisdom tooth, mine was causing be problems,went to a high end dentist to get it pulled, before he pulled the tooth he sid a 3d x ray of my head so he could see my teeth. well now, and this is how i found this video, i think i have strep throat, but only the right side is swollen, i stuck my finger back there went to push on my tonsil, went to far back and felt i very hard bone like you are talking about"styliod process". so now im going to go back to the dentist and get the 3d x ray and see if it on there. then go from there. i to have been having major problems with my sinuses, all this started just like with you. i got what i thought was the flu in 2010. until then i never had sinus problems. im wondering if this is related to a life long viral infection????

[@camnpog]

I had panoramic xray and being worked up right now for Eagle's, lost all teeth due to Sjogren's, having vascular issues carotid stenosis etc, contact me on FB thanks!

[@marisdsvega7919]

Chicos alguien encontro cura al dolor.? Que tomaban para el dolor. Justo estoy pasando por esto

[@angelocasio5471]

I know this video is old but did you ever recovered from Your symptoms and if you did what was the problem?

[@so_cal_mom]

I think I have this. I got these symptoms two days after my daughter got the flu. I was thinking I had cancer but I got a scope and they found nothing. Does drinking alcohol make the pain worse?

[@GabrielVasquez]

Yes

[@camnpog]

Had you had wisdom teeth out prior? Had you been given an Fluoroquinolone antibiotics such as Cipro, Avelox or Levaquin, by any ENT's or any docs at any time? Have you also had an MRI's with contrast in any of your workups? I see you've had MRI with contrast, around 7:43 in video, are you also having issues with tendons now & spasming & any yellowing in whites of eyes? if you are still having pain it, could be an effect of contrast drugs! contact me on FB! Catherine Nichols Pogorzelski/camnpog

[@camreid4128]

I may be the youngest gpn suffereror? First began when 11! Just began treatment at 16.

[@GabrielVasquez]

22 here

[@susys8501]

Hello my name is Susana. I suffer from takayasu's arteritis. But I have felt symptoms such as pain behind my ear and underneath my jaw line, where the glans are. Also I can hear weird noise type of heart beating noise. Those symptoms comes and goes. But when they are present, I feel very exhausted and depress. Does this sound like any of your symptoms of experiences. Thank and I hope you feel better. God bless

[@archiebaldklondike511]

Look up Ernest syndrome

[@jettagliturbo]

Contact me Susy

[@michaelmccormick296]

Hi, I'm having same symptoms susy and along with tinnitus, don't know whats wrong?

[@charlesguero2003]

side note, i took the flu shot in 2009, then right after that started having all kind of health problems. bronchitis, turned into pneumonia. and always sinus problems which the dr say its a sinus infection. ear pain on the right side, same side i felt the hard bone in throat. dr says its a ear infection??? I see once i get the 3d x ray.

[@jakeeveryday7531]

does anyone get crunching and liquid noise with every movement of head or anything like that

[@regnjme2000]

Jacob Mooney I get the felling like someone is filling up something in my throat it’s so hard to explain

[@jennifercalvert3941]

my brother has finally been diagnosed after 5 ,years.he has it both sides .right side being life threatening.he has had his op in London hosp. does anyone know of someone in UK who has taken it further legally

[@benturk7620]

Yesterday (4th oct 2019) I got my elongated stylohyoid process surgeried. Dr. Shahoun did it from back of my ear instead of the inside of my mouth cause mine was broken and moved toward my neck in fact an other doctor has broken when he was trying to touch it with his finger from inside of my mouth. Its second day after surgery and my left eyelid n left lips are numb n dont move. Will they get healed? Im really afraid

[@tapaseedeb104]

How much have you healed Ben?

[@frankojanovich9144]

You have no pain now?