New To Group- Symptoms

I totally second what Jules said. When you have a sliver in your finger, it will continue to cause pain until it’s removed. When you have an elongated styloid in your neck, it will continue to irritate cranial nerves & maybe obstruct vascular tissues until it’s removed. Blocking the pain isn’t a cure. It’s a bandaid. Taking out the offending bone will help stop the pain permanently.

2 Likes

Hi I’m new here and am at the end of a short rope that I’d rather just use to hang myself. Idk if I have Eagle Syndrome yet I keep getting Globus sensation & other things where pain isn’t involved. Oh also I should state I’ve been a chronic pain patient for 18 years & have been weaned down to very little so I’m having some hyperanelgesia (spell off my pain receptors are mad as hornets. ) also my PTH levels are very high I’d been saying for 4 yrs I’ve got 2 things wrong with neck. Well since then 7 of my amazing docs retired. I know high PTH levels mess things up but here’s why I’m here these are my odd symptoms
2 years ago a dentist & oral surgeon laughed when I told them my jaw, behind my ear & this tooth hurts BAD & nerve pain shooting everywhere on my face. He says you have the worst infection in ur tooth I’ve ever seen. Hmm I say that’s odd that tooth doesn’t hurt at all it’s This tooth he yells that’s not logical
I get vertigo bad I try and fight it prima ballerina for 20+years but started getting nervous to drive.
My ears where burning so bad near the jaw & I would either hear my heartbeat like in my head or a swooshing sound In ears that’ll go on for days.
Used to be huge talking it’s uncomfortable to talk now.
The neck muscles or sooo tight sometimes it feels like they’re trying to pull my face off.
Changes in headaches I’d hold base of my skull & be down for weeks.
My voice is hoarse & left side jaw swell up if I talk or yawn too much
My vomiting increased
Originally I’d say something is wrong under my brain it burns & hurts.
The nerve pain comes from throat area goes up into ear, jaw, few teeth, & on bad days up my face
Neck spasms really bad
Other night I woke at 5:30 thinking I’d been tazed in windpipe my tongue was way outside my mouth & underneath tongue kept getting zapped with painful electric pulses basically past out & since then I’m scared to eat or sleep at all I’ve already lost to much from parathyroid
Horrible headaches bad
I could go on but I’m depressed tired & hopeless I’m going to UofM Michigan this week & they’re not on your list. I totally broke down when I saw my options for MI it also hurts to swallow i need a Dr with a Brain I’ve got nothing left and many other chronic illness I’m over the it’s just stress or tmj or a disease in your head. I don’t know who to see & I’m tired all the time no energy to drive the country.
Plz any input would be :smiling_face_with_three_hearts:

So sorry that you’re in so much pain, & have been for a while…firstly alot of the pain you’re getting sounds like nerve pain, & there are medications which can help if you’re able to try that? There’s info in the Newbies Guide under ‘ES Info- Treatments’ Otherwise one member suggested sticking lidocaine patches on areas which hurt.
There’s info too about common symptoms & what might be causing them in the Newbies Guide section too. You might find it helpful; your symptoms could be down to ES, & you’ll see that others have gone through the same.
To get a diagnosis you need to have a CT done of your head & neck, & get it evaluated for ES. I’m UK, so we can only have a CT if sent by a consultant; I don’t know if you can get one done through your PCP, then you could have the results ready to take? And when you had the dental treatment, did you ever have a panoramic xray taken? The styloids can sometimes be seen on those. I can understand that you can’t travel far, but it might be worth calling ahead to see if the doctor you’re seeing knows about/ treats ES to save wasting time, some doctors are sceptical. There are other doctors in Michigan on the list, are any of those not too far?
You have to keep strong & push for a diagnosis- have you got anyone who can support you & come with you for your appointments?
Thinking of you, & hope that you can get answers soon…gentle hugs for you.

1 Like

Thanks I was hoping UofM. The dr in my town I researched him & slightly Leary and I’ll never step foot in Henry Ford Hospital (bad things happen at all hospitals but when a relative died during routine procedure they tried convincing us he was never a patient) I’m just done I looked at the meds unfortunately I can’t take any gabapentin type drugs I get the rarest side effect short term memory loss bad. Like let’s eat ate going down the road I’m hungry let’s eat. & psych meds cause severe throat spasms. But lidocaine would be awesome when I had that tooth removed I told surgeon don’t stop other side hurts too & put it under my tongue he’s like ok but those nerves don’t go to that tooth but I felt so much relief he did do a full scan but I’ve read many stories where it only showed on certain test pain dr has MRI ordered but w/o die two months ago had worst headache 30 days in went to pain dr he numbed nerves behind nose & at base of skull omg that was a miracle. Starting over w/all my specialist they were so amazing & in 18months all retired I’ve also had severe renal colic I’m one of those patients that only gets the odd things 4 times all scans normal but still needed surgery each time. I do have support but I feel like they don’t understand most of the time well I keep getting in your head answers lately I’ve lost 70 lbs quickly so I am seeing an otolaryngologists this week for Hyperparathyroidism at UofM & I’ll just have an honest conversation he’s one of the top otolaryngologist in the county & I’m mtg with a team of 5 so I’m hoping one of them can at least talk about who they’d recommend or idk. I also have Sjögren’s syndrome so it’s a lot going on in the neck region. Pain dr ordered MRI because of headaches everyday and they’re different plus rt at skull base it’s swollen. I also vomit multiple times a day which could be parathyroid or the cranial nerve I’m sorry idk all the lingo but I’m thinking with eagles it’s the ligament issue I’ve read about idk tech term but from trauma had multiple head injuries and a fall few years back that severely damaged my neck. Probably my stress my symptoms to a tee match Eagles S. Symptoms & stories but what if I’m wrong & I travel all over & get nowhere I here people say dr took away ES diagnosis. Oh and hospital misplaced my parathyroid results I only found out cause I swore it was a non cancerous tumor causing weight loss. So I just found out my parathyroid has been at a dangerous level for a year when I requested results. I’m off ES topic I’m just stressed & need sleep. I’m no longer positive & it scares me I can’t work but love to volunteer & my husband & I were going to open our house at Christmas to some Foster Kids so they could experience a healthy happy traditional family holiday let them stay here for Xmas Eve & Day & I had to call the agency today & we probably have to not host any kids this year :cry: I’m beat down & with all new drs they’re good but a dr that listens is rare. And when I saw ES I thought oh my I’m not crazy I’ve dealt with Rare a lot but when I saw the very limited #of drs who even knew anything about it I just went numb… I’m glad I found this site I have a #of other diseases listed on this site but I really need support and wisdom with this topic. What type of test should I ask the UofM ENT group to order? Is it tomography or ultrasound, & the MRI how high up does it need to be & should it be w/dye? It’s like my family is immune to those test so I’m trying to cover all bases. My dads cancer was found during surgery for a hernia they saw nothing on MRI, Cat Scan or Ultrasound except hernia & cancer was clear as day when they opened him up. I think I’m just afraid to get doc who’s lacking all ES knowledge & dismisses me quickly. That happened with my hip 5 Drs said I couldn’t handle pain it’s nothing then found out they didn’t do right test & I don’t have the strength to travel the country & possibly get half wit Dr.
thanks for input if you can guide me where to find all ES testing that’d be awesome thank you for listening

final_dance,

I’m sorry your generous Christmas plans have been foiled by your health struggles. Hopefully by this time next year, you’ll be feeling well & will be able to proceed as planned this year.

Some of your symptoms sound like they could be related to vagus & trigeminal nerve irritation. Your migraines & other brain pain/pressure could be from a compressed internal carotid artery &/or jugular vein which is causing intracranial hypertension.

Skip the MRI & get a CT scan of the area between your hyoid bone & skull base. Getting a CT w/ contrast will show if you have vascular compression, but you need to make sure during the scan that your head is in the position that makes you feel dizzy or causes a headache. The most experienced ES doctors on this forum are Dr. Samji in San Jose, CA; Dr. Milligan in Phoenix, AZ; Dr. Cognetti or Dr. Newman in Philadelphia, PA; or Dr. Nuss in Baton Rouge, LA. Dr. Samji prefers CTs w/o contrast but it might be good in your case because of your vascular symptoms.

Once you get your CT scan results, you can send them to one of these doctors for a second opinion if you aren’t satisfied w/ who you’re seeing in your state. Drs. Samji & Cognetti do phone consults (for a fee). Not sure about Dr. Newman. Drs. Milligan & Nuss do not do phone consults but would possibly work w/ you via email if you asked one of them for a second opinion.

Many members on this forum have had head or neck injuries prior to their ES diagnosis so that is likely one of the causes of ES.

Please let us know what you learn from your upcoming appointments.

I’ll be praying you find someone to help you get a diagnosis ASAP.

:pray: :blush:

1 Like

I didn’t realise that you’re seeing the docs this week anyway for parathyroid issues…so if you have to go for that then fair enough to keep the appt. & ask while you’re there about ES. An Otolaryngologist is used to working in the skull base area so that’s good. As we’ve said, you need a CT of the head & neck- the styloids are from the skull base & often elongate past the C1 processes, & the ligaments can get calcified any where from the end of the styloids to the hyoid bone, so a CT needs to cover all this area. With contrast as Isaiah says will show if the blood vessels are constricted, although some members find that they only get symptoms in a certain position so it doesn’t show if in a normal CT position. An MRI won’t show the styloids as it’s more for soft tissues. Doppler ultrasounds can sometimes show if the blood vessels are compressed- again in a position which causes symptoms, but not always. There aren’t any other tests you can have, apart from some doctors do a lidocaine injection into the area to see if that helps with pain, & if it does make ES more likely, but this is in additiin to the styloids looking elongated on a CT. I think from the treatment you had at the dentist when you have pain relief & as it helped that it could indicate styloids might be causing the pain.
You could always print off some info from the research papers mentioned in the ES Info section- for example about symptoms or which nerves can be affected, if it matches your pain, & show your doctor.
Good luck with your appt., hope you get the parathyroid sorted too. Let us know how you get on.

1 Like

Thanks I kept saying to drs before my morphine taper near my tonsils under my tongue hurts & cause a lot of nerve pain if I look to left while talking after few minutes hand and face go numb & I’d get this this weird look strokes aren’t positional & nothing is under tongue. :face_with_raised_eyebrow:
My main stress after short time talking my throat tightness & voice gets hoarse & reading most drs don’t know it or believe in it frustrating. I did however do A LoT of research wrote some stuff down listed sources but the two papers I wanted to read we’re in Italian. Drs in Italy have found 3 possible causes of ES & the 3rd was women in menopause or suffering endocrine problems (which I had hysterectomy yrs ago & my endocrine system is not doing well I see endocrinologist in Dec) it just made me curious but 70 pages in Italian wasn’t going to help me today lol. Wondered if anyone else heard of that finding.
Plus with my parathyroid I’m soo tired soooooo tired I don’t have the strength to fight for myself I guess I’ve lost 70lbs approx in 8 months & now last 3 weeks I won’t eat or sleep it’s like I’m paralyzed with fear that thing where I woke from dead sleep feeling like my face & throat had been tased omg the pain instantly thought of suicide face from yrs ago but I wasn’t get oxygen either I ended up passing out idk from pain or not breathing yes I have random ear & jaw & some face nerve pain now but THAT i couldn’t do to many more times. Rt before I passed out I started trying to do diaphragm breathing last thing I remember & I did read last night “belly breathing” can help either vagus or the trans nerve sorry I should know spellings calm down. Thanks for your help. :hugs: above ground and sucking air for one more day! :dancer:t2::heart:

I’m so glad you’re still with us final_dance! Plead for a CT scan of the neck from hyoid bone to skull base w/ special attention to the styloid processes & stylohyoid ligaments. The article link that was posted yesterday would be a great one for you to take to your current doctors. It’s in English & is not 40 pgs long.

I haven’t heard of the particular study you found, but there are three suggested causes for ES (four counting what you found) - heredity, neck/head injury, & surgery in the neck/throat areas that produce scar tissue (which in turn puts pressure on the styloids causing elongation).

Basically, ES occurs when the brain senses there’s stress in the neck near the area where the styloids &/or s-h ligaments are. It directs the body to lay down extra calcium to “shore up” the supporting structures in the area. That “extra support” (in the form of styloid elongation or s-h ligament calcification or both) causes problems of its own i.e. ES symptoms. The following article is good because it mentions that ES symptoms can be somewhat ambiguous & don’t necessarily point to Eagle Syndrome itself.

Here the article link for you:

I hope this info helps!

2 Likes

first if your PTH is high, you most likely have a parathyroid tumor. I had that as well. You really need that taken care of. Get the best doc you can find to do minimally invasive surgery. There is a closed facebook supportroup for Parathyroid patients where you can find help and good doctors, join that group. Also if you have Eagles syndrome and if you find one of the top otolarnygologist head and neck doctors, one of them may be well able to find and remove the offending parathyroid gland Good luck. Anxiety, brain fog, bone pain, GERD and other problems go along with Hyperparathyroid. Check out Parathyroid.com if you have not already. That website has top parathyroid surgeons, but they do not do Eagles. Best of luck. I had my thyroid and one parathyroid removed in 2010, the same time that I was diagnosed with Eagles syndrome. My surgery for Eagles syndrome came 3 years later.
.

1 Like

Thanks Emma ironically I asked a Dr one who specializes in esophagus about Parathyroid, ES & my calcium levels being off on top of menopause. (She was instantly insulted not knowing what ES was her fellow pulled ES up on computer said this makes sense and she whipped that computer screen around & said IT DOES NOT) she was in over her head lol. There’s no tumor or adenoma on my parathyroid my levels last were 189! So some drs are stumped but I found an article/research paper on ES why more common in women & how they normally are in menopause or suffer endocrine problems but the paper was in Italian. Though you are not the first person to mention ES with parathyroid problems on top of the ES but both are calcium issues in the body. Can I ask did you have surgery forES and which Dr did it? Thanks :pray:t2:

You do know that PTH 189 is serious!

 My surgeon in Louisiana for Eagles was Dr. Nuss. I am learning though that he is hard to see.

He is a cancer surgeon and teacher and head of department. I am not sure that he is intersted in an influx of Eagles patients at this time in his career. He is teaching about Eagles, though.

Yes ironically my PTH results were “lost” in the system and had been accidentally sent to a wound care specialist for end of life patients I took that as a sign the test was done in April & I begged my dr to check April’s test again in Oct. & that’s when he noticed someone else got results. I’m tired all the time (tatt Syndrome) lost 75 lbs quick. My potassium is 2.8 :flushed: & my ALT is low (which can indicate early sudden death) my Vit D & Calcium intake are slightly low so primary thinks it’s the D & cal. But that number 187 is extremely high I know cancer is over 250 but I’m trying to get into an otolaryngologists I feel my body shutting down. I don’t leave bed except for Drs and am afraid to sleep after last ES episode the scan of parathyroid showed no tumors but they can be inflamed & my voice is hoarse from ES symptoms I’m just spent. It’s all hitting me at once

MEANT 189 not 187

I’m so sorry! :pray::pray::pray:

BrooklynGirl, I just read this link and it brought up a completely new picture for me on why I could have some of the additional symptoms from those more common in ES. Thanks for sharing!

1 Like

Just an update, I know I haven’t been one here much, but My ENT said he will take the styloids out. I have to schedule the first surgery tomorrow. I will post again with more info. Once I schedule.

3 Likes

Exciting times, peanut929! I’ve forgotten. Are you seeing someone from our doctors’ list or someone that we may be able to add to the list?

I hope you’re able to have your surgery soon!

:blush:

1 Like

I am seeing Dr. Bumpous from the list. He is an ENT

1 Like

Has anyone had it to where there cheeks feel swollen and ear is full the shoulder is affected and arms from it?

Hi peanut929 -

Yes to ear fullness & shoulder/arm pain (accessory nerve); I don’t know about swollen cheeks but many people have complained of swollen glands. Since your trigeminal & facial nerves can get irritated by ES, the sensation & or appearance of facial swelling could be coming from one of those.

1 Like