I want so desperately to know what is causing my pain. I have not found a diagnosis yet and I have tried so hard to figure this out myself and I come up with nothing. Still relatively new to this group and have not made many post so i’m going to start somewhat from the beginning and try to explain as briefly as possible. I had a syndrome for a year before I was diagnosed And during that year my symptoms were passing out, feeling like I had something in my throat Which also made me feel like I couldn’t breathe And I had neck pain that was so painful. I really can’t even describe it. I had neck pain so bad that I could not do anything for myself during the time before being diagnosed my doctor put me on steroids that helped with the pain in my neck and the feeling of a foreign object in my throat never took the pain away completely it just allowed me to function a little better. Leading up to the last weeks before I was diagnosed with eagle syndrome I started having some chest pain and the feeling like I could not breathe was very strong now. I had surgery on both sides. My doctor went and threw my mouth and remove some of my steroids and ligaments. Immediately after surgery, my neck pain was improved Greatly, and the feeling that I had something in my throat was completely gone, and passing out was resolved. This was all such a blessing for me, but the blessing also come with a nightmare that I can’t figure out and that is destroying my life right now. This nightmare is chest pain. I had chest pain so bad that I could not get out of bed And was in absolute agony from it. I went to the emergency room they could not find anything in my heart has checked out fine. I also was seen by cardiologist once and he stress test that was normal. I don’t know what happened but The pain in my chest, let up just enough, but I was able to get out of bed and force myself to keep working but this chest pain still has been almost impossible to deal with and has been going on since May of last year. The pain is constant and never goes away. During this whole time, I also have still been dealing with neck, pain and tongue pain. My tongue feels like it goes through my throat and it’s attached to whatever my chest is doing. Followed up many times with my surgeon and he has not been able to figure out what is causing all of this. He did tell me that I still had slight calcification on the right side, and that my right side was a little bit longer than my left, and that my styloids Appeared thick So he said he wanted to do a CT of my head to rule out compression of my glosso nerve. If my come back normal, his plan was to go back in and take a little bit more off of my right side. My scan showed that I have an artery in my head pressing on my glosso nerve. He referred me to a neurosurgeon, and when I seen her she had my CT scan pulled up and she said that my anatomy appeared normal to her but she said you don’t always know until you get inside for surgery So this left me with not really knowing if this is what I have or not Under the advice of my PCP I decided to have surgery with Dr. Hackman to remove my right styloid to see if that helped before having this brain surgery. One month postop from that surgery And my chest pain, tongue and neck pain has not improved at all And now I have pain in my back between my shoulder blades it seems to be right behind my chest pain in the same area. The pain is So bad that I can barely work a job and don’t know how I will keep managing. Something has changed in the last few days with the increase of this back pain and my tongue hurts and at times it feels like I can’t breathe again or like it’s attached to my chest or something. I don’t know it’s so hard to explain. I reached back out to the doctor that did my first ES surgery And he wants me to see the neurosurgeon again about discussing possible surgery for decompressing the nerve. Don’t know if this is what I really have or not because like I said, the neurosurgeon told me my anatomy appeared normal to her. She also told me she has done one of these procedures before, so I’m not comfortable with her doing surgery on me. I just want to know if I have it or not and what is causing my chest and back pain. My doctor did tell me that it is possible this compression could be causing my chest pain. I contacted the Mayo Clinic and sent them the CT showing that I had it, but I was denied. I have my follow up appointment with Dr. Hackman and he said he believes it’s safe to say that I do not have Eagle syndrome anymore that when he removed my sty, it should have removed any compression. We did discuss my left side but he does not really think my left side is a problem. I explain to him the possibility of the artery compressing that nerve and he wants me to follow up through that and then he’s going to follow up with me after I see the neurosurgeon. I made an appointment with a different neurosurgeon to get a second opinion and that appointment is March 22nd. My tongue still hurts so that does give me indication that I still have something going with that nerve but I’m not so sure that maybe it’s not nerve damage. My doctor told me that it would not be damage. My doctor that did my first surgery is so wonderful and kind he is 81 years old and still works full-time so I know he has a sincere and caring heart. He really has tried to help me and I’m thankful to him because he diagnosed me with ES syndrome when no one else could after seeing multiple doctors But I can’t help but wonder could damage possibly have been done when he went in through my mouth because from understanding, they can’t see this route of surgery. He did tell me that he feels for the steroid and breaks them off. I really feel bad to even think that, But after that surgery is when I come out with all of this chest pain. I’m so sorry this has been such long post and I’m in so much pain that I feel like it’s hard to explain. Please does anyone have any ideas on all of this? I am strong and trying to push through. I have managed to work full-time through all of this and looking back. I only know it’s by the grace of God that I was able to do it But now that I have the added pain in my back on top of the chest pain that is horrible. If I don’t get answers I’m going to lose to this pain. I absolutely can’t keep working a job like this And I love to work I’m a nurse and love my job. We will lose everything with only my husband’s income. I have three kids, and a granddaughter that I want more than anything to be a part of their lives. I want to be able to go to church. I’m mostly just watch my church service from home on Facebook but I managed to go last Sunday, but it was so hard and I loved being there all of my children and my husband. It was such a blessing I want to be well I want to, serve God and just enjoy spending time with my family and I want so badly to be able to keep working. This is all just a nightmare. I take such good care of myself I eat very healthy And try to get plenty of exercise. I have never smoked cigarettes or used drugs or alcohol. My doctor just prescribed me Percocets for pain so far it’s not working but I have only taken half so maybe I need to increase it but I hate the way they make me feel they make me feel loopy, drowsy, and very nauseous. I take it with food and anti-nausea prescription med and it still makes me sick. This is also frustrating And I’m starting to let fear overcome my faith. Thank you to all have taken the time to read this very long post. I hope it has not been confusing.
I’m so sorry that despite surgery you are still in so much pain, it sounds awful…
If your doctor suspects glossopharyngeal neuralgia, I’m not sure that a CT would show it; the best scan from that I think would be a FIESTA MRI scan; this looks to see the nerves and whether there are any blood vessels compressing the nerve. The MVD surgery for this is quite tricky so I agree with you that it would be best if you could have more certainty about this being the cause before undergoing surgery…Some members have had nerve blocks which would be less invasive, that’s perhaps something you could ask a neurologist about? Ben’s friends also have a facial pain group, you could have a look at that as they may well have more specific info about the nerve pain you’re having, here’s a link:
Welcome Members! - Living with Facial Pain
If it is GPN, that could cause tongue and neck pain, but is unlikely to be the cause of your chest and back pain. I’m not sure what that could be; some members have had heart arrythmias when their vagus nerve has been irritated, and possibly if the carotid artery is being irritated as well, although I would’ve thought that it would have improved with the styloids having been shortened…
Scar tissue can cause symptoms to come back, but it sounds like yours never went away after surgery so it would be unlikely this would be the cause?
Have you tried nerve pain medications like Gabapentin or Amitriptyline? It might be worth a try if you haven’t already…
I’ll pray that you do find out what’s going on and that your pain eases, and that God strengthens you. Sending you a hug 
Thank you for replying back and sharing your knowledge with me. I don’t have any facial pain just the tongue it kind of feels like I have something in my throat again at times and feels like it goes down into my stomach at times I agree GPN could cause the neck and tongue pain but I don’t see what it has to do with my chest and that’s my biggest problem. I’m going to ask my doctor about a fiesta MRI. I tried gabapentin and I can’t tolerate it at all. Really bad side effects. I have a prescription of amitriptyline But honestly, I have never tried it because I’m so scared of medication. I don’t tolerate meds. I know I need to get up the courage to take it if I don’t do something I’m going to be confined to bed at home. Thank you for praying for me. I do believe in prayers.
I am so sorry you are going through this. I pray your pain goes away.
@Prather3000 - When you mentioned chronic chest pain but that cardio tests show your heart is fine, I immediately thought of the vagus nerve. It can cause miserable knife-like pain in the chest. I get it once in awhile & used to think I was having a heart attack but have come to the conclusion it’s my vagus nerve getting angry for some reason. It happens w/o palpitations or skipped heart beats & lasts from a few minutes to an hour or more. I have not been able to determine what causes it because it’s so intermittent.
Because the vagus nerve is so extensive in our bodies, it can cause throat pain, breathing issues/shortness of breath, & gastrointestinal problems to name a few of it’s areas of influence. I’m also guessing it’s potentially causing the pain in your back but as referred pain. Since your GPN is being compressed by an artery in your head, it’s also possible that the VN could be, too, but further down. Another option as @Jules mentioned could be scar tissue.
I agree w/ the neurosurgeon you spoke to that even when things look normal on a person’s scans, if there are symptoms of obvious nerve irritation/impingement, the cause may not be obvious until the surgeon can see it first hand during surgery. We’ve had a number of our members mention that when they had their styloidectomies, styloids were longer than expected, nerves were wrapped around the styloids, scar tissue or other soft tissues were compressing nerves or vascular tissues, etc. Though our current diagnostic scans are better than they’ve ever been, they still don’t show everything.
Please let us know what you learn from the second opinion neurosurgeon appt. you have coming up. It’s great that the surgeon who did your first styloidectomies AND Dr. Hackman both are still very interested in your case & in helping you. If you decide you want the MVD surgery with a more experienced surgeon, Dr. Hackman may be able to give you the name of someone who can help you. We’ve had several members who’ve had MVD surgery & you can search for their posts by clicking on the magnifying glass image in the upper right & typing in MVD surgery. @1speechpick is our most recent member to have had it.
I am truly sorry for the pain you have & will also be praying that you’ll get answers & relief soon!
@Prather3000 @Isaiah_40_31
I definitely have extensive experience with MVD surgery, cranial neuralgias, and other things. You’re welcome to message me if you have any questions.
I’m desperate for answers. Would it be too much to ask if we could talk over the phone? I’m terrible at messaging and there’s so much I want to describe. I completely understand if you’re not comfortable with doing that.
Thank you so much for praying for me.
Thank you for replying back. I feel alone at times with my family and friends around me because they can’t possibly understand what I’m going through so being able to talk to others about this helps me so much!!! Additionally the prayers are much appreciated and needed. My chest pain is constant and never goes away at all and has been this way since May of last year when I had my first ES surgery. It’s just about more than I can handle and it’s so frustrating to not know what is causing it. Dr. Suen did my first surgery and he is the one who ordered a CT scan where the radiologist said I had GPN. Dr. Suen recently told me he thinks my chest pain is possibly coming from the compression but I just have a hard time understanding how that can cause constant pain that is extremely painful. I was started having some chest pain in the end right before surgery but nothing compared the the level of pain that was after surgery. The day of surgery I was having something going on with my chest or something and it was horrible and really scary but I just can’t find a way to explain it. I just know ES was definitely causing something similar but then worse after surgery. I have a hard time telling this to Dr. Suen because he is a good doctor and wants to help me so much but I’m concerned that he doesn’t understand the seriousness of my ES. I was passing out and my blood pressure dropped so low and one of the times I passed out I was at work with other nurses and they said I was blue and stopped breathing. I also had a seizure like activity when I was at the doctors office. The doctor said it lasted three minutes and right before it happened I felt like I was going to pass out and I told the doctor I was going to pass out but this was not a seizure in my opinion though it looked like one but I could remember being under and my head shaking and I felt like I was dying then when I woke up I had full memory of everything leading up to it and I did not lose control of my bladder or anything. When I seen Dr. Suen for the first time after going through all of that he diagnosed me in five minutes and that was the first time I heard of ES and he made arrangements in his schedule to do surgery in two days and the day I come out of surgery I never passed out again or even felt like I was and my neck pain was so much better plus the feeling like I had something in my throat was completely gone. Then I come out with chest pain and still had tongue pain but my tongue pain has never been stabbing or sharp and it comes and goes. It’s just a uncomfortable sensation. I can’t imagine anything that it could be is something with my glosso nerve. I definitely had ES and definitely my terrible chest pain come after surgery. If I have GPN from the artery and this is rare and ES is rare then what’s the chances of me having two rare conditions? I just can’t understand any of this but I’m suffering so much and so scared that no one will figure this out.
When you have your appointment w/ the second neurologist, please ask if you can be referred for a FIESTA MRI to look for compression of your vagus (chest pain), trigeminal (tongue/mouth pain), glossopharyngeal (tongue pain), hypoglossal (tongue pain) & accessory (neck & pain between shoulder blades) nerves.
I just looked up which nerves could cause back AND chest pain, & this link came up which suggested intercostal neuralgia caused by the intercostal nerves. If these nerves are involved with your current pain, I don’t have an explanation as to what could have caused them to become irritated:
Intercostal Neuralgia: Triggers, Symptoms, and Treatment.
These could have been symptoms from your internal carotid artery(ies) being compressed or irritated by your elongated styloids, & it makes sense that those symptoms would be gone now that your styloids are short & no longer in contact w/ the ICAs. There is something called a Dystonic Storm that ES can cause. It’s pretty rare but mimics a seizure but w/o loss of consciousness. It’s possible that’s what you experienced. This problem seems to stop once the styloids are shortened. This video link shows the dystonic storm experienced by an ES patient of Dr. Osborne’s. The visual of a dystonic storm starts just past the 5 minute mark on the video: https://www.youtube.com/watch?v=Ik2GonNOahw&t=25s
We have quite a number of members who have several rare conditions & as a result of this have begun concluding that ES is often just one layer of several in a series of more complex health issues a person may have. I’m really sorry you may be in that category. I will be praying that God will lead you to doctors who can help accurately diagnose what the cause(s) of your symptoms are so they can be dealt with & you can have full recovery.
If my story and experience can help someone, Im all for it. Ive been in a place where i never thought things would get better, so i know what it’s like. Shoot me a message.
@Prather3000 - In case you don’t know how to start a private message to @1speechpick, just click on her screen name as it appears above one of her posts & that will take you to a page where you can start a private conversation with her.
Thank you, I did not know that I could send a private message.
Thank you for always being so helpful. Dr. Suen yesterday checked my chest for tenderness and there wasn’t any. My CT of chest was normal so this has to be nerve. I’m still In so much agony and don’t know how much more I can handle
I’m glad your CT was normal & the exam Dr. Suen gave you didn’t turn anything up for you, but that still leaves you w/o an answer. It sure sounds like a nerve problem to me, too.
I’m sorry if you’ve already answered this, but I don’t have time to read back through the whole thread - Have you tried taking a nerve pain medication? The ones most commonly mentioned here are Gabapentin, Amitriptyline, & Carbamazepine. There are many others as well. These are usually started at a somewhat low dose & gradually increased until the effective level is found. The gradual increase helps reduce side effects. The most common one is feeling tired or sleepy, but there are others. It can take several weeks for the medication to build up enough in your body to be helpful so it’s not a quick fix like taking Tylenol or Advil. You’d need to be committed to try it for a month unless the side effects are too bad then a different one might work better.
I’m praying for you to find the answer to the cause so you can start treating it & feeling better.
So sorry that you’re no further forward, it must be awful for you, praying that you get some answers & sending you a hug
Hi, a couple of thoughts on nerve pain.
We feel all pain through our brain, so changing our brain state can help us better manage pain signals. This can range from simple things like meditation (eg Headspace et Al) or medical devices that help to block pain signals. So alpha Stim device can put your brainwaves in Alpha waves state (it can be worn all day if needed on lower settings) and it has probes etc to target specific pain areas. I use NuCalm to control my brainwave state when I need to and it helps rebalance CNS. Pain stresses the body so calming everything down can help. There are other devices I know but I have not tried them myself. I have found photobiomodulation to be very effective for me with reducing nerve pain. I normally use near infrared settings on my home device (Helios/Joovv). I have seen Thor practitioners for red light therapy on specific areas & Novothor (like a sun bed) to lie in. It reduces my nerve pain levels. Hope of some help. Take care. D
That’s very helpful @PatientD , thank you for the info! Glad that you’ve found techniques to help you manage nerve pain
Hi @Prather3000, I was looking through some recent posts and I couldn’t help but wonder how you’re doing.
I’ve had discomforts of varying level in my chest as well, and have had instances, twice on a plane, where I would be able to inhale and exhale air, but still feel out of breath. In those instances, it would sort of start spontaneously and get worse and worse over just a few seconds…
I don’t have a verified answer for what cause them to this day.
If your Eagle Syndrome was involving your internal jugular vein (and based just on your earlier mention of blurry vision I’m thinking this could be the case), the veins may be thrombosed, ie they may be damaged internally and have blood clotting along the vessel walls to whatever degree. If those clots break off and go down through your heart and get stuck in your lungs, it’s called a pulmonary embolism. I would think that the chest CT was able to rule this out, but I don’t know that your doctors ruled out jugular vein thrombosis, which is apparently a rare condition, and not generally known to be associated with Eagle Syndrome.
There should be some simple blood tests—D-Dimer and WBC/Leukocyte counts—that can rule it out. I’d ask your primary care if they considered it.
Maybe print out this 1-page article from 2020 to show them:
Here’s the essential excerpt:
It is well known that prolonged venous compression can lead to
the development of deep venous thrombosis (DVT). DVT is much
more frequent in the lower limbs, but it may occur in any section
of the venous system, including arms, abdominal, and also the
jugular veins. For instance, thrombosis of the subclavian vein at
the costoclavicular junctions, also known as Paget-Schroetter
syndrome, is caused by intermittent venous compression due to
muscular stretch in the thoracic outlet and may potentially result in
pulmonary embolism initially classified as of unknown origin.Similarly, it has already been demonstrated that compression
of the jugular vein caused by an elongated SP may result in
jugular thrombosis, thus configuring the case of “Eagle jugular
syndrome.” In such a scenario, clinical manifestations may vary
from migraine to cerebral venous thrombosis.In light of such evidence, it is reasonable to hypothesize that
jugular vein thrombosis may also lead to pulmonary embolism. It
has been reported that in approximately 20% of cases of pulmo-
nary embolism, the source of emboli cannot be identified,
representing the so-called “isolated pulmonary embolism,” which
is frequently caused by unusual forms of venous thrombosis and
thrombophilia. It could be speculated that jugular vein throm-
bosis in Eagle syndrome may be responsible for some of these
cases of pulmonary embolism, given that this eventuality has
been poorly investigated.
Back in May of last year, I went to ER after I had two such episodes of breathing difficulty. I had a white blood cell count (WBC aka Leukocyte count) that was near the upper threshold that has since gone down. They didn’t do a D-Dimer test. My very rough understanding is that D-Dimer is a by-product of your body trying to dissolve the blood clotting after it tries to heal the vessel wall damage. If it’s elevated, then your body’s doing a lot of work trying to break down blood clots, and could mean that the styloid process that was removed did so much damage to the internal jugular vein that it’s having trouble healing.
If they’ve already ruled this out then yeah, my thinking goes to the vagus nerve as well…
I hope things have stabilized.
(sorry to over-explain to a nurse btw! 
)
(I should maybe also mention the breathing difficulty and chest discomfort episodes I get do not go away on their own. They require manual intervention…in the form of ‘body-oriented meditation’, something I started doing before I had any symptoms of Eagle Syndrome and was generally healthy… I haven’t ever let the episodes just continue without intervention…because they’re very scary.)
This is a very insightful post & something I don’t recall having seen on our forum. We’re learning that more & more complex problems can result from ES including additional complications from the vascular forms as you noted. You may have already commented on this but it seems that ES is often a co-morbidity which is often diagnosed prior to the others involved, & once treated & as symptoms resolve, can help define what else is going on in one’s body. However, @vdm pointed out that sometimes treating ES first isn’t the best course as it can create complications which make identification &/or treatment of other co-morbidities more difficult.