Hi Adele, so sorry to hear of your struggles, you are not alone and we all understand what you are going through. Hopefully someone on this forum in the UK can point you in the right direction. I am in Canada and am having the very same problem…getting a medical professional to listen. I finally have a referral into a Dr. (Otolaryngology Head and Neck Surgery) who has done surgeries for ES, sadly I have been told I need to wait 6-12 months for a consult. I chose to wean off all the meds, I found they did not give enough relief for all the side effects and damage they could do to kidneys/liver. We know your pain is real, as are all the other symptoms of this terrible disorder; keep the faith, hopefully you will be led in a direction for relief soon. Take care.
Adele, sorry that you’ve had such a frustrating experience, we’ve all been there so do know some of what you’re feeling.
We have a list of doctors familiar with ES in the Doctors Info section, & have one for Other Countries (as opposed to the US). If you joined a while ago you might not have seen the updated list- we have a few doctors in the UK who can help. Mr Axon at Addenbrooks in Cambridge is one of the most experienced doctors in the UK- he works on the NHS & also does private work through Spire if you’re able to pay for a private consultation. A couple of members have also had surgery with Dr Jonathan Hughes in London recently- I’m not sure if he does NHS work but he does private work. There’s several others on the list as well.
I hope that you’re able to get help from one of them- getting a diagnosis is a big part of the battle, but getting surgery is not easy either…hugs to you.
Adele, Seenie here from Admin/ModSupport. I’m not an ES patient, but I experienced something very similar after being undiagnosed with Psoriatic Arthritis for 15 years, despite my complaints. I’m still bitter about suffering through that and being seen as an OCD crazy lady. I’m sure that you and I have a form of PTSD from years of being told that nothing was wrong, and the self-doubt that it causes. I still feel betrayed by the doctors who didn’t accept my word that something was wrong.
We’re very lucky to have Jules here: she’s a great moderator, and in your case a fountain of local knowledge! I hope that being here will help you get over what’s happened and get you headed in the right direction, to a consultant who is experienced and current in dealing with ES.
All the best to you
Wow, if any of the doctors you have seen had those styloids in their own body and had your symptoms, they would get them removed instantly. Doctors need to walk in other people’s shoes a little sometimes.
A friend works within a private hospital here in the UK. She got me this advice today for free. “Eagles can be operated on but indications are mainly throat related so not sure it will help with her symptoms.” This particular ENT surgeon is happy to see me but I’m going to book with Mr Axon. My friends have raised some funds to help me.
The last few days have been sleepless and I’m angry. How could they not believe my pain for 14 years? Will this calcification continue to grow, will I be able to speak or swallow?
I’ve sought advice and hopefully should be referred to cardiology and/or neurology soon.
Would any of you be able to interpret what the ENT surgeon means exactly by “Eagles can be operated on but indications are mainly throat related so not sure it will help with her symptoms.” please.
I have so many questions and noone to ask. I need a copy of my CT and soon. I am now more convinced than ever that they have missed an autoimmune disease.
I see my GP on Monday, I hope she’s receptive to referring me without any delay waiting for the CT report.
Sorry for the ramblings. I’m so lost right now. I really did hope that CT would come back with nothing…
I am sorry you are so frustrated right now-rightly so. I just had surgery 2 weeks ago after dealing with many dentists, 5 ENT’s and medical staff. I had several opinions about my bilateral styloid elongations and 2 ENTS said I did not have it on the left side, which is where I just had a 5.5 cm one removed. I can feel your pain, anger and bitterness over how some of the medical staff treat us-mostly because they are uneducated about this rare syndrome and OBVIOUSLY because they don’t have it. I hope you are able to focus your energy on finding a knowledgable doctor in the UK who is able to lead you on your path to being ES free. Stay positive and best wishes!
Thank you Kay, I hope you are healing well x
Very glad that you’re able to see Mr Axon- he is very experienced, so his opinion can be trusted.
I’m not sure what the ENT means on the report- either that ES is usually indicated by throat symptoms & that these will be helped by surgery, or does he mean that you don’t have typical syptoms so surgery won’t help? From your previous post I would presume it’s that he doesn’t think surgery will help you, but actually having surgery for vascular symptoms can odten make a huge difference to health. I didn’t have all the typical symptoms, but had vascular ones, & surgery definitely helped me! It certainly sounds as if you have vascular ES; Mr Axon is well aware of this & does work with a vascular surgeon as well. The only thing I would warn you about is that he does like to get a CT with contrast, & usually wants this done his way at Addenbrooks, so this could be alot of travelling for you…& waiting times on the NHS are pretty long, as you’re probably aware.
I’m sorry that you’ve had all these symptoms & been disbelieved for so long, I hope that with time you can let some of this go as storing it up can cause stress & make inflammation worse…
Have you had blood tests to look for inflammation & an autoimmune condition? If it shows anything then you may be able to get a rheumatogy referral.
Sending you a hug, please ask if we can help you with any questions…
Hi Jules, you are right, I need to get over how angry this has made me as it’s making me very poorly right now. I have contacted PALS and they are going to find out what the next steps are from the ENT appointment. I’m hanging fire on booking the appointment with Mr Axon until I get that reply. There was talk of a referral to neurology and cardiology but I couldn’t remember if they said they would do it or if they wanted me to get the GP to do it. I’m calmer tonight. I think the lack of sleep hasn’t helped my mood. I’m off to sleep now. Thanks for being here to listen and advise xxx
Yep, the lack of sleep from pain definitely doesn’t help! Glad you’ve got Pals behind you. I’d chase up the referral with your GP if you can- leave it a week or 2 so they’ve got the report from your ENT , you could always just ring about it, or otherwise ring the ENT consultant’s secretary & ask, they can be quite helpful sometimes! I would’ve thought that the ENT should do the referral but given your experience so far it pays to double check! Hugs to you…
I think I am doing very well, thank you. A lot of my symptoms are gone or diminishing and I hope some will continue to diminish and disappear as the swelling goes down. It makes me sad to see you in a position I have been in the past but there is light at the end of the dark Eagles tunnel…it is just hooking up with the right physician fit for you and trusting in your gut instincts. I am glad that you have joined this group to share your thoughts and journey. Jules is an excellent resource in your part of the world! Eagles is both a physical, spiritual and emotional journey…I try to look for the positives in the journey and move on…praying for you! Rest well and have a peaceful day!
I’m late chiming in but felt the need to comment as well. Your styloids are VERY long & I believe having them removed will make a HUGE difference in how you’re feeling & in resolving many of the symptoms you have over time.
Many doctors are of the opinion that ES is a “throat thing” i.e. symptoms are mostly in the throat - pain, poking feeling, trouble swallowing, etc. They don’t have the knowledge or don’t think about the nerves & vascular tissues that exist in the neck in the area where elongated styloids/calcified s-h ligaments are poking around. Thus they dismiss the many symptoms we get that stem from irritated cranial nerves & vascular tissues that can get compressed (usually internal carotid arteries &/or jugular veins). It is frustrating at the very least & can even be a dangerous assumption. If you Google cranial nerves, especially the trigeminal, hypoglossal, glossopharyngeal, facial, vagus, & accessory & look at what functions they control in our bodies, I expect you’ll find the source of many of your symptoms.
Hoping & praying you get some more positive & proactive help soon!
[quote=“Adele, post:1, topic:5831, full:true”]
I had my ENT appointment today. They aren’t willing to state my various symptoms, daily headache/migraine, pain/difficulty on turning head and swallowing, dizziness/passing out, fast/slow heart rate etc is down to my now definitely confirmed Eagle Syndrome/Elongated Temporal Styloid bone/calcified styloid process ligaments. They called in a consultant who has apparently performed operations to remove these back in the 90s, who stated that the operations are not always successful, that the scar tissue can cause symptoms of their own and that they were not willing to operate on me.
They are referring me to neurology for more tests and pain clinic for more patronising.
So here I am, with my extra bits, on all these meds, still trying to get someone to listen. I now have to find £200 from my money tree to see a consultant here in the UK who does think that all these symptoms are caused by my extra bits.
I am angry and pretty upset.
This is the only photo I could quickly take whilst the room was empty. I have requested the file of my CT scan from the right department and expect to receive that in the next decade.
If I sound bitter it’s because I am. I have been trying to get someone to listen for 14 years since my tonsillectomy. I’ve been treated like a crazy woman for most of that time. My pain is real and I have had enough.
If there is anyone who knows ANYONE who can help
Hi everyone it’s been a while. As you can see from my scan from about 4 years ago my styloids and ligaments are huge! All my throat pain and symptoms and feeling of something stuck are still at bay. I’m still having the chest pain though. I’m wondering has anyone else been so bad with this that they couldn’t live with it anymore and then it all settled down? I think they must be doing some damage in there even though I’m not feeling the pain anymore. I do worry about vascular damage cause they are so big. So my surgeon is happy to leave it for now but I’m just waiting for the next flare up. I can’t believe how I’m not feeling any pain, maybe the nerves are dead? I was so bad before I couldn’t even talk or eat!
It is weird how the ES pain can suddenly flare up for no apparent reason, & then settle again, sometimes members have last it a while before surgery…I had classic ES, then I started to get vascular symptoms, I can only think that maybe because I had a prolapsed disc in my neck that it perhaps shifted the styloids enough to compress the veins, who knows!
So we can’t really answer why symptoms have gone quiet! But having surgery is a difficult decision; there are risks in surgery, & also leaving them in can cause risks too. There have been quite a few posts recently about Vagus nerve involvement; JustBreathe, Brooklyn Girl & Isaiah40:31 have given us lots of info about the symptoms it can cause if compressed, if you have a search you might find that helpful re your heart issues.
So would your surgeon be willing to do surgery if you want it, or are they refusing until if the symptoms come back?
Thanks Jules. No my surgeon won’t do anything until my pain is back but I’m ok with that. I was thinking of asking for a venous scan of neck?, if that’s the right name to see if there’s any compression.
The “venous scan” would be a CT w/ contrast. You would need to have your head in a position that causes vascular symptoms (i.e. a provocative position) to actually see which veins/arteries are being compressed as having your head in neutral may show nothing.
Looking at your CT I’m astounded the doctor would think removing all that calcification might not help you. I wouldn’t worry about scar tissue causing symptoms as much as, like you, I’d be concerned about more permanent damage the styloid & stylohyoid ligament calcification could be doing to nerves & blood vessels.
Your stylohyoid ligaments are “tethered” by calcificaton on both sides which means your hyoid bone can’t move normally when you swallow, speak, breathe, laugh, etc. That in itself usually causes a lot of pain & problems. You are very fortunate that your pain has subsided for the moment.
Hi Isaiah no my surgeon is willing to do the surgery whenever I’m ready, but now that my pain has subsided I’m waiting as I am very fearful of surgery. I have no real proof of vascular symptoms so I was just wondering if the venous scan would show anything.
How fortunate you are to have such extensive calcification of your styloids & s-h ligaments & not have vascular symptoms. That is truly amazing! You’ll know when the time is right to take care of this surgically. It would be awesome if you just stayed pain free for life, though! It’s something to hope & pray for!!
Mr Axon was wonderful. He’s writing to my GP and I will be helped for my Eagle Syndrome. I feel like I’m dreaming. It’s been such a long road but I’m finally being listened to. Thank you to this group I have got to see the right person. Thank you thank you thank you xxxx