I’ve been gone for some time. I’ve been struggling on a daily basis since these symptoms had started. I had been waiting on the NHS for over 6 months with still no date for the CT venogram and i’m deteriorating. So with the help from my family, I paid for the CT venogram privately. The scan showed that I have bilateral eagles with compression of my jugular veins on both sides by the C1 transverse process. The left side is worse than the right (and my symptoms are also worse on the left side).
It seems like surgery is my only option for resolving my symptoms
I’m a little nervous because some people say that removing their styloids did not help allowing the jugular to open up and function back to normal. Does Dr Axon make sure that the jugular veins open up once removing the styloid?
I’m worried also because taking the styloids out from the skull base seems risky because of all of the nerves in that area and I don’t want paralysis. I’m not sure how to avoid this though as my jugular compression is pretty high up near my skull base.
I also have cervical instability and i’m not sure how this will be affected by having my styloids out? I feel i don’t have a choice but to go ahead with surgery if my blood flow is being cut off…
Can anyone tell me what their experience with Dr Axon was like, pre-op and post op? Is there anything i need to ask about? Or need to know about?
These are my symptoms:
-Constant head pressure
-Spaced out/drunk feeling/dizziness
-Unsteady on my feet
-Brain fog. Can’t think properly or remember simple things.
-Feeling like i’m not myself. Dissociation.
-Extreme anxiety and panic attacks - I’m not naturally an anxious person at all.
-Base of skull/neck pain
-Clicking and snapping when turning my neck left and right
-Extreme muscle tightness in neck
-Strangulation feeling around throat
-Pressure in my throat/palette and behind nose
-Feeling like my esophagus is being pushed and prodded when turning my head. Accompanied with constant clicking noises that sound like it comes from inside my throat/ears?
-Burning tongue/sore throat
-Jaw pain and clenching my teeth during sleep/sensitive teeth
-Ear pain/fullness and ringing - hissing and high pitch noise
-Hurts to talk. Losing voice
-Constant body pain, shoulders, back, pelvis and legs
-Shaking and tremors
-Muscles all over body are tense and I can’t make them relax. (not sure if it’s my nervous system under constant pressure)
-Joint pain and clicking
-Heart racing wildly whilst resting, or just walking across the room. Leaves me short of breath. As does talking.
Extreme fatigue. Whole body feels like it’s been hit by a truck and I have no energy. Even laying down is tiring.
-Wild body temperature fluctuations. Feeling constantly cold but profusely sweating. Hands and feet are constantly freezing.
-Numbness and weakness in arms and legs. Numbness around face/jaw and neck.
-Burning sensations over body.
-Chills that come in constant waves over my body. I think this is triggered by head movements. Happens more so when i’m laying down.
-Restlessness.
-Feeling extremely unwell all the time.
-Hypersensitivity to sound.
-Blurry and watery eyes
I’m hoping a lot of these symptoms can be resolved with surgery.
I also would be grateful to know if anyone had severe pelvis/hips/leg pain with eagles which had resolved after surgery? I understand how shoulder and arm pain relates to eagles but my lower body is in constant pain - can eagles cause this?
I know this post was probably all over the place. I appreciate if anyone can help answer my questions and can give advice.
DONT GIVE UP! It is good you took the step to have the CT venogram privately and know have the benefit of knowing exactly what is going on. That is more than half the battle! Surgery is likely your only option to resolve some or all your symptoms.
Many of us have had this surgery and even though they go into delicate areas of nerves,etc IF you are in the hands of a highly competent ES surgeon, the likely hood of any paralysis is minimal. The benefits of surgery ie: change your life for the better far outweigh the risks.
I took have neck instability due to Ehlers Danlos Syndrome-hypermobility. I also have TMJ and jaw problems. I relate these all back to my EDS and neck hypermobility. I have had years of neck tightness. I also have very hyper-mobile hips. Earlier in my life, I was told I had fibromyalgia but it was ehlers danlos all along.
I can tell you after decades of dealing with this, I have found regular massage and warm water exercise to help with the body pain and the tightness in the neck. I also have found acupucture, chiropractic and cranial sacral therapy. Given your compression, chiropractic not a good idea.I more recently had to pay out of pocket to go a TMJ specialist and get a custom night guard and a CT scan in his office showed a jaw alignment problem which has contributed to my jaw pain. With all these things going on at once and they are connected to each other, it hard to figure out which direction to go first. I chose to get the Eagles surgery first, 9 mths apart. I now have moved on to deal with the TMJ.
Its hard to say if all your compression could give you all these symptoms. Your heart racing, tremors,etc etc sounds like some vagus nerve issues which is common with some Eagles patients. The nervous system can really go out of whack and affect your body temperatures, numbness,etc. I have a daughter who has what is called POTS (Postural Orthostatic Tachycardia Syndrome) and has many of the same symptoms you have. It could just be vagus nerve but I would suggest you have your doctor do a blood pressure and heart rate test on you. Its usually after 10 minutes laying, after 10 minutes sitting up and then most importantly 10 minutes standing. If your heart rate jumps more than 40 beats per minute while standing, it is worth taking a closer look. Often heart racing can be misdiagnosed as “anxiety”.
Try not to get too concerned about the risks of the surgery. others here can speak to Dr Axon’s experience and that you are in good hands with him. Ive had over 20 surgeries in my life and the Eagles surgery was a walk in the park. I hope some of that helps.
It’s so good to talk to someone with neck instability too. Did you find that removing your styloids made your instability worse at all? That’s my main concern. The styloids must have grown to compensate for the lack of stability to provide that support and i’m worried that removing them will make my instability worse. But since my styloids are compressing jugulars and most probably my vagus nerve too, i don’t feel like i have any choice but to have surgery.
I was completely fine and healthy before this started back in March this year. I was extremely active and danced up to 4 hours a day. Now i can barely walk across the room without feeling short of breath and having my heart race wildly. If this is POTS related, I believe POTS must be structurally caused. Because I had none of these issues before. And I’m not sure if its because of my neck instability or if it’s caused by my styloids… maybe both?
I plan on having PRP to repair and strengthen the ligaments in the hopes to resolve my neck instability. I didn’t know whether to do PRP first or to have styloid surgery first? I think it might be more risky to leave my styloids pressing on my veins though… so maybe i should have my styloids out first?
My questions for you are:
Did you find that removing your styloids made your instability worse at all?
Did the removal of your styloids bring relief and resolution of your symptoms??
I did not see any difference in my neck stability after ES surgery. Some of my symptoms have resolved but I have osteoarthritis in my jaw (from years of clenching) and still have the neck instability. I continue to deal with those issues and get regular injections in my jaw and neck of steroids, botox and nerve blocks. I did see a physical therapist between surgeries and did some neck strengthening exercises.
My question is why do you have neck instability? What is the cause?
Have you ever been evaluated for Ehlers-Danlos or told you are hypermobile? 50% of POTS patients (mostly female) have Ehlers Danlos - a connective tissue disorder. Given you are a dancer, I imagine you are pretty limber. I did alot of gymnastics myself when I was younger.
I first learned I was hypermobile in my 30’s when I was seeing some orthopedic doctors for my neck instability. I was getting injections of proliferen which is supposed to help stabilize the neck ligaments which were helpful at the time. Honestly, I dont think PRP would be of any value for ligament instability - I would search out what they call prolo-therapy. It was only years later when my daughter was diagnosed with POTS, did we see a geneticist and learned it was Ehlers Danlos all along causing the ligament instability. EDS is genetic. All my kids have some form of it. Almost all of us have had hand and wrist surgeries for torn ligaments and nerve compression from scar tissue. I think I tore a wrist ligament simply from doing down dogs in yoga. I do not over stretch my ligaments any more.
There is some evidence to suggest that POTS is triggered by a virus. Personally I think we have certain gene defects…in this case POTS and Ehlers Danlos. Something triggers the body to go haywire, in this case the nervous system goes out of whack. It could be any gene defect that gets triggered. They say that is the case with some cancers.
Given you have vein compression and blood flow issues to the brain, I would go for the styloid surgery first. That is only get repaired by surgery so it make sense to do that first.
I am only going to pitch in that I also had, as one of my ES symptoms, a problem with my heart racing during exercise. My blood pressure would drop which caused my heart to race & I would feel like I was going to pass out. I think this also happened a few times when I was doing basically nothing. I chalked it up to my vagus nerve & that symptom did go away after my styloids were removed.
We have several members who have tried PRP for ES & other problems. As far as I know, all have reported spending A LOT of money without significant improvement. It’s a therapy that sounds good in theory but doesn’t provide what is promised in the end.
Snapple is our resident authority on EDS, POTS & cervical instability. She has given you great information in those arenas.
I’m glad you’ve come back to chat some more, @Dontgiveup. We’re here to walk alongside you during this time.
I’m not sure what the cause of my instability is. I’ve had a few hits to the head. And my MRI’s show increased mobility in my neck from lax ligaments. But I’ve never injured my ligaments or had sprains or any dislocations growing up.
I think most people are hypermobile to a certain extent and maybe only in a few joints. Growing up, so many of my friends could over extend their elbows and touch their wrists with their thumbs. I couldn’t do that. My knees can extend slightly, but it’s not extreme by any measure. I can’t do most of the Beighton Score tests. But i’ve never been tested for a connective tissue disorder either.
I agree that something like a virus could trigger certain conditions. I haven’t been ill in some time and if i did get a virus, I didn’t have any symptoms. I have also heard of people whos’ POTS has gone into remission when correcting a structural issue. I have heard from people with EDS who have had benefit from prolotherapy and i’ve also heard from some people who have had their cervical instability improved with PRP, which has in turn helped their POTS.
It’s reassuring to know that having your styloids removed didn’t worsen your instability.
Thank you Isaiah It means a lot to have the support. It’s extremely daunting and when family and friends can’t understand it themselves, it makes you feel alone.
I’m glad to hear those symptoms went away after surgery. I hope the same occurs for me. Like I said, I was completely fine until one day i wasn’t. I’m hopeful that resolving this problem gives me my life back.
I don’t have any instability issues with my neck, but did have bilateral jugular compression, & had surgery with Mr Axon twice to remove each side. I made a massive difference to my vascular symptoms, the head & ear pressure, dizziness, off balance feelings, spaced out feeling & tiredness improved massively. There are risks with the surgery, but Mr Axon is extremely experienced, so you would be in very good hands. He is a skull base surgeon, so removing the whole length of the styloids is not a problem- mine were compressing the jugulars all the way up too. Mr Axon also works with a Mr Higgins (I think that’s his name) , a vascular surgeon quite often. I was looked after very well for both surgeries & felt very confident with Mr Axon.
The things I would ask about (as well as the cervical instability) are whether your stylo-hyoid ligaments are also calcified, & if so if they would be removed too. ( they would need to be removed if calcified as they could cause symptoms if left in. I’m not sure if Mr Axon does this, mine weren’t calcified so I didn’t need to worry) Also ask about whether he feels removing the styloids will be enough or whether the C1 processes would need to be shaved too- we have a couple of members in this situation seeing Mr Axon at the moment. Here’s a link to Aleabee’s discussion: First surgery scheduled Mr Axon - General - Living with Eagle
I would imagine that the flow through the veins would be looked at while you’re in surgery; I was told that if mine didn’t reopen fully they could do stenting later, although this can be painful & the stents can’t be removed. Luckily mine were fine, & I only get a bit of the head pressure back if I’m really stressed, very hot or when I flew.
I hope that this helps!
Re your symptoms, as Snapple & Isaiah have said, the vagus nerve can cause stress, tiredness, and heart arrhythmias & breathlessness. Burning tongue & sore throats have been noted by others, the first 5 symptoms are common with vascular ES, they’re symptoms of Intracranial Hypertension, as is ear pressure & tinnitus. The strangulation feeling & clicking could be calcified ligaments. Pain talking & vocal changes are also seen with ES. Cold hands & feet could be Raynauds- do they turn blue? It’s an autoimmune condition, not necessarily caused by ES but has been noticed by a few of us. The eye issues could be from the Trigeminal Nerve which innnervates the moisture glands in the eyes; I get very dry eyes instead!
Hypersensitivity to sound is common too.
TheDude did a really informative post about muscle tension & inflammation which you might find interesting, he did a 3-4 month update towards the end of this discussion: Made it to California - Surgery on Monday – and Follow up - General / Eagle Syndrome Stories - Living with Eagle
There’s more detailed info in the Newbies Guide Section: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Great to talk to you again! It’s been many months. Thank you for the links and the advice. Dr Axon did mention shaving some of my C1 transverse process. But i told him my worries about my cervical instability and the possibility of removing some bone worsening my instability. I didn’t really get much feedback on this, a part from his understanding of my concerns. I’ve since been told by someone else that as long as my ligaments remain untouched, i should be fine. I just don’t know though. There’s no absolute answer as everyone’s bodies are different.
My jugulars need to be freed though or the surgery is pointless. I’ll have to talk to Dr Axon about it some more.
Did you have body pains? I have them all over but my arms feel heavy, numb and weak. And I have extreme pain in my legs. I’m not sure if eagles can cause those symptoms? And if you didn’t have these symptoms, do you know of someone who did?
Did you also have any circulation issues? Can jugular compression cause this? - No. My feet and hands don’t go blue. Just have very cold extremities that feel numb and weak.
Hi Dontgiveup, pleased to meet you.
I am new on here but I also have a lot of different things going on. I hope you are coping OK, Its rotten having to been in pain and discomfort all the time, and constantly having to battle with the NHS to get anything done, especially when you have non pidgeon hole conditions like many of us have.
I had one GP who labelled me as a Hypochondriac because I have so many unsolved ailments. I left him after that. I can well understand why your name is Dontgiveup.
Its comforting sometimes knowing that you are not alone in your suffering and that others are in a similar boat. The pain I am in, is now all consuming and apart from trying constantly to improve my health, I do very little else. I even had to finish work early. I had no choice. We are all stuck with what we have got and we have to keep soldiering on as best we can, we mustn’t give up. Miracles can and do happen, but only if we dont give up.
This is my list of Conditions.
Eagle Syndrome.
Onset in 2014 following stomach surgery. DX in 2020. ES symptoms: Constant Ear pain and ear fullness, Constant headache, uncomfortable swallowing sensation in throat. The strange thing is, I cant feel anything sharp to do with boney things sticking in me. My pain doesent feel like its coming from my styloids. I had intraoral surgery in May 2021 to remove my styloids but they had to abort because of the risks. It now seems my surgeon has give up so I dont know where I go from here.
Chronic Fatigue Syndrome and Fibromyalgia (ME). DX in 2013.
Ischial Tuberosity pain Syndrome. onset 2013. I am in a lot of pain when I sit or walk very far.
As far as ES is concerned, I am very open to the fact that further surgery might not work or is not the cause of my pain. My ENT surgeon is not much help to me, he doesn’t want to do any more surgery, he doesn’t seem sure about anything. Reading about Dr Axon I am wandering if I should be seing him hopefully on the NHS or even private , Trouble is, is Cambridge is along way for me. I live in Wolverhampton.
Do you have far to travel to see Dr Axon and are you NHS or paying privately. I hope you dont mind me asking.
If I don’t here from you, I wish you all the best with your OP and hope you have a quick and comfortable recovery.
I’m so sorry to hear how much you are suffering too. It is a comfort to know that you’re not alone, but at the same time it hurts to know that others are suffering so deeply too. I understand too well with GP’s. The amount of doctors i’ve seen is ridiculous. I’ve had anti-anxiety medication thrown at me multiple times too. You know your body best and sometimes these doctors and even friends and family can convince you that it is all in your head because they don’t understand it themselves. I’m pretty much housebound at this point, I can’t work, let alone make it through the day sometimes.
Getting referred to Dr Axon was so difficult. I’m pretty sure doctors just want to make life difficult and prolong the suffering
With Eagles, I don’t have the sharp sensation present either. I’ve only had it a handful of times where it randomly happens and when i coughed once. Mostly it feels like a a pressure around my throat like i’m being strangled. Sometimes it feels like i have swollen glands right under my jaw and they press on my throat. I have the ear pain/fullness, constant pressure headaches. If i remember rightly, I don’t think Jules had the stabbing feeling the the throat either.
And funnily enough, eating and chewing relieves my symptoms for a little while. I have a theory that the movement of my jaw is alleviating pressure on the nerves or jugular vein. But I can’t prove that.
I’m sorry that your intraoral surgery was aborted, but that may have been a good thing?.. depending on who was going to be doing surgery. If your surgeon wasn’t confident, it’s a good thing he aborted. It would have been awful if he continued and ended up making things worse.
I wonder if your chronic fatigue and fibromyalgia is actually caused by the onset of eagles syndrome? I was absolutely fine last year, had energy to burn but as soon as i started to have eagle syndrome symptoms, i deteriorated fast. I have constant pain all over my body and fatigue so bad that a short walk knocks me out. I refuse to believe that the body just feels like crap for no reason. There must always be a root cause, or maybe a few causes.
I do have to travel far to see Dr Axon. I live just outside London. It takes 1.5/2 hours to drive to Cambridge. Luckily my family are able to drive me there and back. I was waiting on the NHS for 6 months for my CTv scan, heard nothing, and was getting worse, so with the help from my family, I paid privately for the scan to get things moving. Turns out that the styloids are compressing my jugulars. I imagine they’re compressing my nerves too. Surgery wait time on the NHS is over a year. I told him i’d probably be dead before then.
I’ve heard great things about Dr Axon. He’s meant to be one of the best and most experiened and if it wasn’t for this site I wouldn’t have known. If you can, I would get a consult with him and explain your symptoms. I’m pretty sure he’d be able to do the surgery if that’s what you need. With such a surgery like a styloidectomy, you want to be in the right hands. I hope you can get the help you need from him.
I have to remind myself not to give up everyday. Hopefully there’s a light at the end of this tunnel.
I want to remind you to please not use your real names at all on the forum as it is a public place. We want to protect your privacy as best we can. You are welcome to conservatively share personal info in a private message (just click on the icon of the person you wish to PM & a page will come up where you can email privately).
I didn’t have pain in my legs at all- there doesn’t seem to be a scientific reason for it but others have definitely had leg pain too…whether it’s muscle tension from pain leading to inflammation, or muscle tension trapping nerves maybe? Arm weakness and pain can be caused by irritation of the accessory nerve, quite a few members have had this. I have Raynaud’s so do get blue hands, my hands & feet are always cold. That’s an autoimmune condition, it started about the same time as my ES symptoms got bad so I think there’s a link.
You mentioned about the ligaments being untouched- they have to be detached though during surgery as they’re attached to the styloid process. Mr Axon usually detaches them from the styloid, and leaves them in, but they’d only be anchored on the hyoid end.
I don’t know much about the cervical instability; @Snapple2020 has good knowledge but hasn’t noticed hers any worse after surgery I believe.
It’s so frustrating when doctors label you as a hypochondriac, or suggest that you see a psychologist which quite a few members have experienced. Having more than one rare condition doesn’t help!
It is worth the extra travelling though to see a doctor who does know about ES- some of the US members have to fly across the country to get seen!
Hi Jules,
Ordinarily, having to travel a long way would not be a problem for me if it meant I could sort out my ES, trouble is I now struggle with driving and sitting because of my Pelvis problem. If I have to though, I will find a way. It seems the surgeon who attempted to remove my Styloids last time, now seems to have given up on me. When I spoke to him last, I asked about a Glossopharangeal nerve block but he just referred me to the pain clinic and the pain clinic don’t do it. I think hes going to discharge me but I will see what they propose next. Probably nothing because he now has doubts about whether ES is causing my symptoms.
When I first got diagnosed with ES, I thought I was well on the way to getting sorted. How little did I know. At least I have now found this site, so that’s a big bonus.
Jules, I take it you have had your Styloids removed by Mr Axom, intraoral or neck, and how long ago ? How are your symtoms now compared to how they were before ?.
Many Thanks, All the Best, Sparky
That’s tough that you have a pelvis problem too, I hope that you can find a way to travel easier…
I had the first surgery in 2015, second in 2016, both external. The vascular symptoms improved massively fairly soon after surgery- I had been feeling quite ill before it so that was a big relief. I also had facial pain which was partly controlled with Amitriptyline, but this had got worse before surgery & I was getting numbness & tingling in my face as well, it hasn’t gone completely with surgery but has improved. The other side did get a bit worse then- it does seem to be quite common after one surgery that the other side ramps up a bit- so I decided to get that done too.
The surgeries weren’t as bad as I expected- Mr Axon has a technique where he operates mainly behind your ear, & doesn’t cut any muscles. He also uses a drain so you’re kept in one night which helps with swelling. So recovery wasn’t too bad…overall I’m loads better than I was, very glad that I found out about Mr Axon from this site, & extremely glad that I could get the surgery!
I have most of the symptoms you have except the throat ones since my styloid is not long but thick and compressing my dominant jugular vein. I have noticed you listed a number of muscle related symptoms and pelvis and lower legs pain. I am not a doctor but according to a youtube video regarding jugular vein compression around C1, it is hypothesized that it could be due to congestion of venous drainage of spinal code caused by the compressed jugular vein which could potential affect the blood flow to the spinal code causing weakness and muscle stiffness. According to this youtube video (Venous Compression Syndromes: From Diagnosis to Treatment - YouTube), at 13;30 min mark, talks about a 17 year old lady with right jugular vein compression between the styloid and C1 who had all four limb weaknesses and could not walk but after stenting, she was able to walk and run. So yeah you could have lower body pain and numbness if you have compressed jugular vein.
-Muscles all over body are tense and I can’t make them relax. (not sure if it’s my nervous system under constant pressure)
-Numbness and weakness in arms and legs. Numbness around face/jaw and neck.
I really appreciate your reply. Thank you for including that link. Its exhausting to have people tell you that your symptoms can’t possibly be related since they’re in different areas of the body. - though the body is completely interconnected, so it’s not exactly that far fetched.
I’ve talked to someone whose leg pains/restlessness was cured with a styloidectomy, once the pressure was relieved from the jugulars. So there may still be hope for me.
Unfortunately I’ve got to have a catheter angiogram before I can be scheduled for surgery. So the process is yet even more prolonged. Im suffering greatly and to be honest, I’d rather just die than continue. Im beyond exhausted and there is no let up. Doctors have no urgency. I really hope there’s a light at the end of the tunnel. My whole body is under pressure and relief can’t come soon enough.
on second thoughts you can keep it