Hi all, it’s been a while. A couple of years ago after having constant poking/pain in the left side of my throat, horrible back of neck and head pain, clicking/crunching in my left jaw, pain in/behind left ear, trouble turning head from side to side, tingling in face and top of head, heart palpitations and (possibly related or unrelated) occasional anxiety, and a constant tenderness/pain under jawline under chin, I schedule surgery. I knew I had ES after a dentist discovered it years before and a CT scan confirmed that both styloids and ligaments were fully calcified and measured over 8cm long.
I had my left side (supposedly fully) removed, as that was the side where I was experiencing all of the issues. I did not have a post op CT, and did not get a very detailed explanation on how much was removed but went to a reputable doctor that has done hundreds of these surgeries. Recovery was slow, but after a few months ALL of my symptoms were gone. The only thing that remained was some grinding in my jaw on left side, but it did not cause too much pain. I had my life back! I could look down at books/my phone again without experiencing neck pain and head tingling and feeling like I was being choked.
Now, I am starting to feel many of the symptoms return on that side. I have scheduled an appointment with my ENT to get a new CT scan to see what might be going on. Has anyone else had their symptoms come back after a couple of years? I know it could possibly be caused by leaving the right side in, but since I have no symptoms on the right side I am afraid to have it removed if it might not fix it and possibly could cause other issues or make things worse.
My dentist made a fitted night guard for me which I have been wearing to try and relax all of the muscles and my jaw, but it doesn’t seem to do too much. Advil works the best to take some of the inflammation and pain away. I am wondering if I should consult with a TMJ specialist but I have not heard very promising things when it comes to this. I also am afraid they will want to perform procedures on me, but that the underlying cause could just be my styloids or calcification. I’m kind of at a loss. I see people talking about craniocervical instability, and it seems like a whole other set of specialists that work with people on that.
Any guidance or info would be appreciated. Kind of just needed to get this out and reach out to see if others are in a similar boat. I just want this to be resolved for good, and I feel like this is a step back.
Do you have the operative report from your surgery that indicates the length of the styloid and calcifications taken out on the left side?
I would suggest you get a new CT scan to see where you are at.
I went for the worst painful side first even though my right side was longer. I did regret that decision but did have the other side done about 6 months later. If your styloid on right is 8cm longer, that is hefty and I would consider surgery as the other side can kick up - mine did.
As much as any doc has a good reputation, dont take it 100% to the bank as some have had not so good outcomes with those stellar docs. get a 2nd opinion and 3rd.
I had neck instability (EDS) and TMJ before diagnosis of Eagles. I knew going into Eagles surgery it wasn’t going to be 100% fix. I had mine in 4 (left) and 12/2020 (right) almost 2 years ago. I was doing fine up until a year ago when an emergency tooth extraction put me (my jaw) off the deep end causing a cascade of problems. I had just spent $2200 on a mouth splint a month before. It is the 2nd one I have tried in my lifetime and both times, it only served to move teeth where they shouldn’t go and change my bite for the worse. I recently went to an oral/facial pain center at a major university setting and getting interesting trigger point injections with lidocaine - jury is out on this one also using muscle relaxers - they dont do much for me either. Its similar to dry needling. I get quarterly botox in my jaw, neck and temples. Somewhat helpful. I can’t take NSAIDs as they give me stomach bleeds.
My opinion…TMJ specialist private practice outside major university oral facial pain centers are part snake oil saleman/woman. Most insurance does not cover what they do. I think they take advantage of desperate people in pain. Not all are that way but Ive been to a few and urge you to use caution. A cone beam CT Scan to make sure your jaw is in good alignment is probably a good idea to make sure there is no structural issue.
You are right, neck instability is a whole other subset of specialists. Ive been down that road too (for decades) and still going down the road. I have found chiropractic, massage and cranial sacral therapy to be the most helpful although it is temporary. As for inflammation, some say cold laser therapy can be helpful although I have not tried it yet. Finding a good PT/OT and/or body worker is very helpful to guide you. Take a look at your weight, diet and posture.Work on your core strength.
2 years out from ES surgery and Im having all sorts of symptoms - I was fine for about 1 year. With the help of another patient here, we did discover what appears to be pieces of calcifications on my right side next to carotid. Not sure if they were left from ES surgery or not? I suspect so. I have found certain neck positions are causing vertigo and dizziness which suggests positional compression. I know some of this is nerve related. Im heading in for dynamic vertebral and carotid angiograms next week and just had a neurogram of my chest and neck that indicates venous thoracic outlet syndrome (VTOS) with moderate to severe compression. I had EMG testing that had already indicated neurogenic TOS (NTOS). I likely have both. I was referred for NTOS evaluation in 2018 which led me to a referral out and a diagnosis of Eagles as I was in so much pain. Now I am back where I started. Specialist to specialist but think I finally got a documented reason at least for part of my symptoms.
I feel like someone is choking all the time (below jaw line) which I didn’t have before ES surgery and only developed past 6 months. I now have issues looking up and down especially reading. The same tingling feeling you describe. MRI’s dont show much that would cause these symptoms.
I can’t say that Eagles surgery hurt me or made things worse. It has been a process of elimination and I chose that route first. If I had 8cm calcification, I would go for taking it out as that is pretty darn long…longer than most. Just dont expect it to be the cure all if you already have TMJ and/or neck instability. One foot in front of the other. Stick around here and many can help you walk this journey.
On tmj topic I agree you can spend a fortune and end up no better off as a result. I spent years with jaw & bite specialists & they all had differing opinions to each other. Overall I think a Tanner type guard that fits over bottom teeth seems to be less risky but proceed with caution in this area. D
So frustrating for you @Be_kind! I think you’re taking the right steps to try to figure out what’s going on. I also think you’ve been wise to leave your asymptomatic styloid alone so far, but please consider that a remaining styloid can cause crossover symptoms once one has been removed. It’s possible that’s because a sort of structural imbalance is created when one styloid is gone, & one elongated styloid remains.
We do have members who’ve had styloids regrow & have had to have revision surgery. That’s definitely not something any of us hope for.
I’m also going to jump on the band wagon abt TMJ therapy. I think the best thing is to get PT. I’ve worn a night guard (splint) on my lower teeth for decades. It may have helped slow the progression of my jaw problems but it hasn’t stopped them.
Please keep us in the loop as you look for an answer to your symptoms’ return. We’re always here for you.
So sorry that you’re having symptoms again, so miserable for you I agree with the others that a CT would be a good starting point, so good you’re already going down that route…we have had a few members who have come back with recurring symptoms & regrowth- even when the styloid was cut right back- so if you have time you could use the search function to have a look, you’re not alone, unfortunately! Wait & see what the CT shows before you think about what to do with the asymptomatic side. Thinking of you, sending you a hug
I’m in the same boat as you with vtos. I have both vtos and bilateral venous eagles. My styloids are extremely thick and over 3 inches. Mine was an accidental finding as well. The clinic that I reached out to for tos that discovered the eagles mentioned the symptoms can overlap. In 4 yrs I’ve gotten tos to let go twice from minutes to days and instantly could breathe, had no head pressure and no more pots symptoms. I’ve seen 5 ent doctors that all say venous eagles is a none issue and only a problem if there’s pain. Not sure where I go from here but if you can address your vtos maybe that would really alleviate some issues
Have you heard of Kjetil Larsens work relating to VTOS?? As his work sounds right up your street.
@11bravo - The doctors you’ve seen for ES have no idea what they’re talking about regarding VES. Your VTOS is a symptom that has been linked to ES & is solid evidence your styloids need to be removed. Dr. Hackman in NC or Dr. Hepworth in CO, are both experienced w/ VES & would be resources for you but would require that you travel to see them.
I have. I do neck exercises he gave me that seem beneficial but the shoulder exercises unfortunately make my tos worse. He’s the one who diagnosed my eagles.
What is the link between venous eagles and venous tos. Venous tos is compression of the subclavian vein not the IJV. One doctor I had an appointment with in Clearwater which was a physician recommended through here literally laughed in my face when I mentioned venous eagles. He’s just another doctor saying venous ijv occlusion is negligible and doesn’t cause symptoms. The most recent ent was the ent physician for every astronaut that ever went into space in the 80s and 90s and said unless you have pain it’s not an issue. My insurance doesn’t go out of state so unfortunately Hackman at this time isn’t an option. Dr Bunnel is next.
Very interesting to see, thanks for sharing. All I can say regarding the ENT’s you’ve seen so far is they’re insert Michael Jackson voice IGnorant!
Do you have any 3D close ups of your IJV? It seems pretty likely that the C1, Styloid or both are compressing the IJV further in rotation. Or your styloids are irritating nerves within the carotid sheath.
There are numerous research papers in that section about jugular compression if you want to print any out & take with you to an appointment, hopefully Dr Bunnel will be more helpful!
Ya I hope dr Bunnel is more helpful. I’ve definitely brought literature with pictures and personal images to correlate with what I’m at their office for. They either acknowledge the occlusion and say that the occlusion doesn’t matter or just say eagles syndrome is a syndrome of pain only. I do have a bad neck injury as well so the documented symptoms from both overlap which is definitely a pain to address as well. I do have images of ijv occlusion that predates my symptoms by 7 years. Cervical vertigo from ligament and nerve damage in the upper cervical area is kinda the route they continue to look at. I think it’s both.
Thanks for the info everyone . Certainly some additional things I can think about doing and look into while I wait for an appointment with my ENT.
Dr. Bunnell has received excellent reviews from our members who’ve seen him for consult & surgery. I believe he’s helped a few who had VES. As far as the connection between VES & VTOS, it’s not a vascular connection but a nerve connection. The cranial nerves affected by ES include the accessory nerve which innervates some of the neck, shoulder & arm muscles. When this nerve is irritated by ES it gives TOS type symptoms. Add to that your neck injury (which may have been the cause of your ES) & other nerves/muscles that were likely damaged & voíla, you’ve ended up w/ two really unpleasant syndromes. In our experience here, some of the members who had TOS symptoms found they disappeared or diminished significantly after ES surgery. I can’t promise that w/ VTOS, but you may find that it does help. Remember that ES surgery isn’t an instant cure, & it can take up to a year post op to get the big picture of what’s recovered & what hasn’t. Usually by 6 mos post op, you’ll have a pretty good idea though.
Isaiah gave a good explanation below. I am personally just learning more about the TOS. Its hogwash about the venous Eagles what these docs are saying - find a new doc. I really do believe its a matter of the doctor’s beliefs and their level of expertise. I would work on getting health insurance that allows you to travel out of state given open enrollment coming up.
Back in 2015, I began experiencing shooting nerve pain up my neck into ear. It was pretty painful. Only thing to knock it down was dexamethasone. MRI’s never explained my symptoms. Went thru a few years of injections, PT, arm symptoms, and referred out for suspected TOS. Eventually severe pain finally led me to a neurologist who suggested the Eagles diagnosis in late 2019.IN 2020 I had 2 Eagles surgery. Ive read TOS can also be connected to TMJ. Had a custom lower bite appliance and it moved my lower front teeth within 4 months - likely from the EDS. Ideally I now need orthodontics because of it.
I just returned from another state after having cerebral angiogram to see if I was getting compression or occlusions in neck. It came up clean. My neurosurgeon spoke with vascular TOS guy there (who I consulted with) and even though scans show moderate to severe compression of my subclavian vein, the vascular surgeon doesn’t feel it warrants surgery or does it explain my symptoms My chest feels like an elephant on it, my arm is going numb and they dont think this explains my symptoms. He explained that the subclavian vein can reroute itself and find other ways to transfer the blood. Im getting 2nd & 3rd opinions on that as everything I have read doesn’t jive with it.
The minute I abduct my arms to do anything (raise arms), my neck goes numb. Although my MRI’s of neck don’t show alot (mild bulging - some mild bone spurring), he is now re-focusing back to my C5-C6 area for diagnostic nerve blocks. I have no doubt there is nerve involvement and a combo of muscle/ ligament dysfunction.It started out as severe nerve pain in my neck ie: scalenes. Removing the styloid on that side has helped some (but not all of it) I asked neurosurgeon if C5-C6 could cause all the chest and arm symptoms Im having and it was a weak yes.
Nerve irritation can wreak havoc in our bodies.Especially in the neck and jaw. A 2nd neurosurgeon I consulted gave me RX (which I havent started yet) for dexamethasone to calm down my nerve irritation.He said if I get a significant benefit, then he would suggest a 2nd round of it to knock it down 100% and it could be curative? I have my doubts about this but I will give it a try. I do believe most of us Eagles patients have some sort of chronic inflammatory process in our bodies.
Sounds like you definitely have some form of neurogenic and venous tos. MSK neurology and Dr James Stoxen from my research seem to be the leaders in non surgical intervention in regards to tos. It’s funny you mention rerouting veins as the first ent I met with that said venous occlusion was a non issue was because those IJVs will reroute and figure a way to drain. I’d rather my stuff just work like it’s supposed to lol. I’m trying to get the VA to get me out to where I need to go out of state but that’s a long shot. I definitely need to research more about insurance going out of state. I thought I had the best insurance you could get since it’s $ 647.00 a month. I’m kinda throwing all my eggs in the Dr Bunnel basket for now. I did reach out to a vascular neurosurgeon in California who was “the guy” for vascular eagles and he acknowledged the occlusion and said it can cause the Nuero symptoms I’m having but recommended a physician in Philadelphia as he doesn’t know much about styloid surgery. I couldn’t help but laugh since he was touted as the guy.
Eve though I have been on here for a couple years, I still can’t remember how to take things private rather than insert into someone else’s thread. We should probably do that.
who you looking at in CA? Im on west coast. I generally had heard Hepworth in Denver the vascular Eagles guy.
I have my doubts about the veins rerouting (Collateral veins) 100% and will be doing my research as well. Ive been doing PT on and off for many years. Although I find its value helpful more recently it makes everything worse. To make matters worse, I just found out I have some ligament tears in my shoulder…the same shoulder I had rotator cuff surgery on 10 years ago. The elbow has severe osteoarthritis to boot. Im a mess.
I poked around on the MSK site. Have not seen Dr. Stoxen’s stuff yet but will look into it. I have a long history of laying down scar tissue that causes compressions. PT does not fix that.
So do you have employer based insurance AND VA? Or do get insurance thru the healthcare exchange? If so, its a matter of choosing a plan
(Look at summary statements) that allows for out of state travel. Regence/Blue Cross BS usually has some. As for going out of state w VA, there is a way. My Dad is an expert in that one. I can ask him if you give me more details.
@11bravo, I am aware of several members from this forum who are covered by VA insurance who have traveled from out of state for ES surgery. The difference in their surgeries was that it had to be done in a hospital with a one night stay as opposed to a surgery center & being released to leave post op. You should be able to go out of state for surgery if you choose.
I still maintain that Dr. Bunnell is a fine surgeon, & you’re likely to get good results if he does your surgery. You do need to talk to him about your vascular compression & make sure you feel satisfied that his surgical approach will help resolve that before committing to surgery with him.
I’m curious who you were in contact with in California who is a vascular ES specialist. The only doctor on our list who really has that reputation is Dr. Hepworth in Denver, CO.