Newbie here!

[Bubble]

Hello All and thank you for this wonderful forum found after many many hours on internet looking up all of my weird symptoms… I stumbled across this group and noticed that I could have ES even though I haven’t been diagnosed (yet).
To be honest, I really have no idea what is wrong with me and I think everyone thinks I am crazy!

2018 was a very stressful year for me… I went through an emotionally difficult time, family issues, which started to get better in August but that’s when my symptoms appeared. I went to my GP as I knew I had a severe iron deficiency and anemia (treated between August ‘18 to January this year, 8 iron infusions in all). In August, i started getting tonsil stones even though I had my tonsils out 30 years ago… these were only on my left tonsil area and i could get rid of them by pushing them out, but they would keep coming back, making my ear and throat very sore. My tongue was so sore and numb too, it felt as if I had burnt it with a hot beverage… it was driving me crazy. I went to an ENT, who told me after examination, that everything looked normal, that I should stop worrying (easy to say when you have a feeling that something is stuck in your throat 24/7…) and prescribed medication for acid reflux (which I didn’t take). I went back to my GP who checked me out again and also told me to stop thinking about it! So I went on mouth washing with bicarb, vinegar, mouthwash, poking at my tonsil area with a toothpick or ear bud without success… I couldn’t find the little bugger that was bothering me, at the back of my throat… I then started waking up in the morning with pain in my ear (pressure too like under water), jaw, neck and collar bone, only on the left side, that comes and goes throughout the day. My throat also burns as if I am going to have the flu. So I asked my physiotherapist to work on my neck to ease the pain, which actually never helped. I have seen my GP many times. He finally sent me for an ultrasound of my neck in December, which came back normal, thank goodness! I went back to see him to discuss the results and I begged him for a CT scan with contrast. I told him I thought I might have ES but he just looked at me, he didn’t even bother to read the documents I took with and the list of symptoms I had prepared. He ordered the CT scan a week after my ultrasound and told me it can’t be ES as it wouldn’t just appear out of the blue and for no reason. After the CT scan, I met with the radiologist to discuss my styloids and she said they were fine. I was so disappointed that I didn’t even think to ask her how long they were or if they are curved. She just told me I was fine and to stress less, start yoga and take painkillers when I am in pain. Great, thanks for your help! I felt like crying. I saw my GP again to discuss the results and he said I should try acupuncture/massages… I have done 3 sessions, which have only made me feel terrible. It feels like the symptoms get worse… I get dizzy when I look up and down, my ears have been ringing since August, I wake up with headaches in the morning which last all day, I feel like fainting when I do exercise and I can’t do anything like burpees otherwise I might collapse. My neck muscles are so very hard and the left muscle somehow gets stuck (like a cramp) and i must move my head around for it to pop back into place… last night I felt pins and needles on the left side of my head and my shoulder and arm are often weak or sore. Strangely these symptoms come and go, some days are better than others… but I have noticed that they increase when I am stressed.

I managed to get my CT scan on a CD and used 3D slicer to look at my bones myself. My styloids don’t seem very long or curved… I haven’t dared show my GP the pictures because he will most probably just think I am nuts for insisting. The doctor who is treating me for my iron deficiency said I should ask my GP for a MRI. Unfortunately he cannot ask for one as he is not my « official » doctor. He said the MRI would allow me to know if the nerves are being compressed.

I am posting a few pics that I created. Would you please be so kind to let me know what you think? I know you are not doctors but you sure all know a lot about this condition! How come it looks like the styloids are floating? Could my left styloid be pressing on the GPN? Another strange thing, is that my throat gets really itchy and I sneeze a lot, my nose gets stuffy (I have no allergies). Could it also be linked to all of this?

I don’t know where to turn anymore, I feel like I am not been taken seriously… I also checked out the ES doctors’ list, the closest ES specialist is in Germany. If I can’t get through to any doctor/specialist here, I could maybe contact him.

Thank you so much for taking time to read my story and for this site which is a gold mine of information!

Bubble

[Jules]

Firstly as we always say, we’re not doctors on here, so can only give an opinion based on personal experuence, not a medical one. I would think that the ‘floating’ pieces you can see are likely to be calcified sections of the stylo-hyoid ligaments, which could be causing inflammation. The styloids don’t look that long, but the angle can also cause problems, they look quite angled & pointy.
You certainly have symptoms of ES, but it’s going to be quite a fight for you to get a diagnosis I fear…you’ve already done what we suggest, reading up & printing off info to help your case. I can’t access the doctors list at the moment; have you had a look to see if there are any in your country? An MRI would rule out other problems and might show nerve compression, but aren’t always detailed enough .
Some members have had similar journeys, so keep fighting, coukd you go back to the GP or ENT & show them the images you have & ask them about the calcifications? Or see a different GP who might be more sympathetic?
I feel for you & hope that you get somewhere soon…by the way, your English is great!

[Brige]

Hi another journey where doctors and consultants are unsympathetic and not really listening. Very frustrating for you. It took me 3 years to get heard and lots of times being told it was in my head but the symptoms you describe are quite similar to mine and I do not have long styloids. I definitely think the sneezing blocked sinuses etc are related. I also have pulsatile tinnitus, sore tongue, get pins and needles in my head ( all on left side). They are very specific areas where I get symptoms and it helped to print out pictures of for instance the inside of a mouth and shade in the areas that tingle and burn. By doing this and talking to an ES consultant he thought there was a likelihood that I had ES and my GPN was causing me the pain etc and agreed to remove my left styloid to the skull base and ligament. My symptoms were so varied and with good days and bad days. I have just had surgery (1 week ago) and recovering. Feeling better and think moving in the right direction but still have lots of swelling from the operation so am being patient. You need to speak to the right people… someone who says “yes we’ve had many patients like you with very similar symptoms” that was so good to hear… to know I wasn’t crazy… that gave me hope. Keep focused and plot your next move… and change to a doctor who supports and believes you… that helps

[Isaiah_40_31]

Hi Bubble!

Jules & Brige covered the important info very well. I want to add that many ES patients have to travel to get to an experienced doctor/surgeon. I’m sending you a list of hospitals in Germany that have doctors w/ good ES experience as well as attaching the link for the ES Doctors’ List that’s appropriate for where you live. Unfortunately, I see no one in your country on that list. In the US most doctors will do a phone consult (for a fee) for people who from out of the area who are looking for diagnosis & surgical options. You may have that convenience as well in Europe.

I hope the following info is helpful for you. I agree w/ Jules, your English is amazing!
Uni-Klinik Bochum
Heidberg Klinik Hamburg
Uni-Klinik Bonn
Uni-Klinik Lübeck
Uni-Klinik Regensburg

OtherCountryEaglesSyndromeDoctors 2017.docx (22.5 KB)

[Bubble]

Many thanks for your replies and support! It really is great to discuss with people who actually understand what I am going through. I am really happy I found this site! And thanks for complimenting me on my English, it’s actually my mother tongue but tbh, my French is much better!

Jules, thank you for your opinion, very helpful. I had a look at the doctors’ list and the closest ES surgeon is in Germany. I live in Switzerland, we have excellent doctors/specialists over here. I am going to start phoning around next week to look for a new ENT who is familiar with ES, there has got to be somebody in my area. My husband is very supportive, he can see that I am suffering and that my GP is not doing enough to help. Health insurance in Switzerland is mandatory. In our case, our insurance requests we have a family doctor (our current GP) and he needs to refer us to specialists and without his approval, the health insurance won’t reimburse medical bills… If I change GP, my husband will need to, too. So I have started to look for someone who will listen to me and want to help me. I don’t want to go back to the ENT I saw last year, I am going to try and meet another one I heard of who is a head and neck surgeon, he might be able to help me with this.

Brige, thank you too for your kind words! I read your latest post-op message and I wish you a smooth and speedy recovery! 3 years… wow! I have only been suffering for a few months, I can’t imagine how difficult it must have been for you and for all the other people here who have been living with this for so long… it seems your symptoms were exactly like mine. Some days are better and I feel a bit silly trying to find out what’s wrong… we went skiing today, I didn’t feel like it but made an effort to go with my hubby and kids. I should have been more careful and taken it easy, I am in pain now, my tongue is like sand paper and strangely the right side of my neck is bothering me too… my face is boiling hot and painkillers are useless. It’s tiring and I wish I could just get this sorted out and get on with my life. I am sick and tired of seeing doctors all the time, it has cost us a fortune up until now for zero results. It’s so frustrating. I see you are in the UK, I could maybe also look at that option if I find no one here to help me out.

Thank you Isaiah for your help, really appreciate it! I will look around here and contact doctors in CH first and if I cannot find anyone, I will definitely start contacting specialists abroad! The thought of having surgery clearly scares me but if it’s the only way to live a normal life again, then I am willing to go through with it. I will get all my documents/cds/3D pics/reports/list of symptoms together and go hunting for THE doctor who will believe and support me.

[Isaiah_40_31]

Hi Bubble,

I’m sorry your fun ski day ended in pain! You can try icing your neck for 15 min. on & at least 45 min off. If that exacerbates your pain then try heat. Ice is a must in the first week or two post op & often helps before surgery as well.

Seeing a head & neck doctor is ideal, & I’m glad you found one not too far from you. Many of the ENT doctors on the doctors’ lists are also skull-based surgeons. Some skull-based surgeons are familiar w/ ES but not all are. Should you venture out of your own country for surgery, Mr. Axon in the Cambridge area of the UK is likely the most experienced in the British Isles though there are other good surgeons in the UK who’ve done successful ES surgeries for our forum members.

Please let us know what you find out & how your appointment(s) go. It’s such a relief to find a doctor who supports you & is willing to do surgery for ES.

I’ll be praying you find someone close to home.

[Bubble]

Hi all!
I havent posted in a while as we all had the flu and finally getting back to normal. Thank you Isaiah for your kind words!
So i contacted the ENT (head and neck surgeon) my friend told me about, 3 weeks ago and saw him on monday morning. I was full of hope when i contacted them, his assistant had already heard about ES so i thought THIS IS IT!!! I went with all my docs, cds and 3D scans. I explained everything, all the pain and other strange symptoms i have since august last year and he really took note and seemed very interested in my case (compared to all the other docs i have seen up until now). After listening to me, re-examining my ears, nose and throat, he said i most probs have an inflamed salivary gland
I insisted on the calcified ligament and asked him to look at my CT scan, he did so and said the left side looked a little longer than the right. But that was it… he told me to put ice on my neck and to massage under my jaw and to see him again in 10 days as he wanted to take time to look at my scan better and contact another ENT to discuss…
So on Monday evening, i applied ice and massaged gently like he told me to. I am never ever ever doing that ever again, the pain is excruciating… i havent been able to sleep since monday night, its shoots down in to my shoulder and my whole upper back is blocked. The symptoms have never been so bad. I wake up so many times at night unable to move. I called the ENT this morning just to tell him that its making things worse and he wants to see me tomorrow.

Has anyone else experienced more pain when massaging around their neck/jaw? Another question i have, since the flu, my right side has been sore too. Not at all as bad as on the left but sore throat, ear, headache and eye twitch, is it possible that it might be bilateral?

I really hope the ent had time to look at my scans properly and will have more news for me tomorrow… i feel so unwell, i just feel like crying all the time
Sorry, this week has been bad…
thanks for reading me!

[Jules]

Bubble, so sorry that you’ve ended up in so much pain…sounds like icing could’ve set off nerve pain- I get trigeminal neuralgia & cold definitely makes it worse for me, I’ve never iced my neck like some others find helpful, it’s heat for me!
I’ve noticed, & it’s been mentionedby others in other discussions that symptoms get worse with any cold/ flu/ virus etc., so could be why your other side has flared up. I was getting worried recently that I was maybe getting regrowth as I was getting pain in my neck again, but came down with a lurgy instead, it’s settled now I’m better.
I hope that the ENT is more helpful tomorrow & that you feel better soon…big hug to you.

[Isaiah_40_31]

Hi Bubble,

I’m so sorry things are worse. First, I’m glad the ENT you saw is taking interest in your case & that he’s even willing to consult w/ another doctor. Two heads are often better than one.

Icing is sometimes very helpful in alleviating ES symptoms but as you noted some people find it exacerbates symptoms. Another option is to try heat as that has helped some people. I don’t think massage is a good idea as it will only “stir around” something in your neck that’s already causing irritation & make things worse as you noted. Should pain usually comes from an irritated accessory nerve. The upper back pain could come from your cervical spine or from your body trying to compensate for the shoulder pain. The upper cervical spinal nerves can also be irritated by ES depending, again on position & angle of styloids &/or calcified ligaments. If your pain continues to be so bad, you can ask the ENT for an Rx to try Gabapentin, Neurontin, Amitryptiline or some other nerve pain med. These sometimes help dull the pain & other symptoms.

There have been some people who noticed early symptoms of ES after having a cold or flu. Thus it is possible that you are having bilateral symptoms. Time will tell if the symptoms persist.

Please let us know how your appointment tomorrow goes.

[Bubble]

Good afternoon everyone!
Jules, Isaiah, you Ladies are real Angels, many thanks for your support and comforting words, it really makes me feel better! I hope you are feeling better Jules! I can bet you would be worried, i wouldn’t want to go through this all over again
I went to the ENT on friday and he totally ruled out the salivary gland idea… he checked my ears, throat and nose again (!) and looked at me quite puzzled. I told him the pain was bad and my left arm was weak and i had pins and needles in my fingers that morning. So he thinks i have a herniated disc and i am having a mri done tomorrow…
i really wonder if a herniated disc would create the foreign body sensation and ear/numb tongue/ear ringing? And if it would also make the right side ear/neck pain and eye twitch…
He didn’t prescribe any medication and just sent me off.
I am stressing about the mri tomorrow, i have never had one done. I honestly don’t know what to think. This will confirm or rule out the herniated disc but will it help to check for ES? I don’t think it will…
I might ask the doctors at the mri what they think about ES instead of the HD. But it seems that no one around here is actually aware of this condition…

[BrooklynGirl]

Hi Bubble,
My ENT sent me off for a neck MRI and low and behold I do have disc issues. So off the neuro surgeon I go. The good news is that he said that all of my neck, face, and teeth issues, etc, did not relate to the compressed discs. BUT, he said he could do surgery on my neck anyway. Haha, Thanks, but no thanks.

Jules,
I woke this morning with a head cold. Unfortunately it does make the ES symptoms worse. The poking feeling in my neck is acute. One step forward, two steps back.

Keep looking forward.
Best to all,
Teresa

[redbird773]

I have some moderate disc disease also. C5-6 and C6-7 I think. Also wondered which of the symptoms I was thinking were part of ES might actually be due to the disc thinning/squeezed nerves. I agree, I don’t think a lot of the symptoms can be caused by the disc issue. But I am more aware of my posture now (it’s always been pretty bad) and I ordered a different bed pillow that is a bit flatter for back sleeping so my head isn’t pushed forward so much. I assume I’ll have to do something about this someday, but hopefully not anytime soon. I have 2 ES surgeries to get out of the way first! I hear you on the colds…they do make the symptoms so much worse:( Hope you can kick it quickly!

[Jules]

MRI is noisy, but nothing to worry about- I think that sometimes you get given headphones, but I didn’t…I have a disc problem C5-C6 too; I had physio & exercises to do, which helped alot. I agree as Redbird says that posture doesn’t help. It also caused alot of muscle tension, which I think worsens ES, so in that sense treatment can help, but I don’t think it would change your ES symptoms.
Hope it goes okay tomorrow, nothing to worry about…

[Isaiah_40_31]

Hi Bubble,

In the US (CA, at least) we’re given earplugs to wear during an MRI because it is terribly loud. If they aren’t offered, ask for them. The best strategy for an MRI is to close your eyes as the table moves into the machine & just relax during the scan. The last one I had, I kept falling asleep & then would have a muscle twitch so they would have to re-do that part of the scan again. Pretty embarrassing!

The accessory nerve (one of the cranial nerves) also can become irritated by ES. It can produce pain in the shoulder & arm though I’m not sure of the quality of the pain i.e. achey, numbness, tingling/poking (as you’re feeling) or what. The “pins & needles” type pain you have is usually associated w/ nerve impingement in the Brachial Plexus which are nerves that come out of the cervical vertebrae. That said, your problems might not be related to the spine at all but to an irritated accessory nerve, in which case, getting your ES taken care of surgically should help alleviate the shoulder/arm symptoms. Getting a scan of your neck is a good idea though as you don’t want to fool around too long w/ nerve impingement in your neck if it’s there.

Depending on what part of your neck the MRI scans, your styloids & s-h ligaments could be visible. That said, if the MRI is really looking for disc disease in your cervical spine, the written report most likely won’t say anything about your styloids or s-h ligaments (if they’re calcified). Cervical disc issues can create pain (pins & needles) in the neck, shoulders, arms & hands & maybe upper back so the foreign body sensation, ear/numb tongue/ear ringing would go back to ES & the nerves being irritated by that.

[Bubble]

Good evening everyone!
Many thanks for all your messages Redbird, thinking of you for your surgery, all the best!!!
I had my MRI last week wednesday. It went really well, i was very proud of myself for not panicking and managed to stay still and not move an inch during the whole exam. I had headphones with music, that i couldn’t hear as that machine is terribly noisy! I was very pleased too as they didnt need to use the contrast product, big plus! I had to ask to see the radiologist after the mri as they were just going to send me home without even telling me if everything was ok. The radiologist had a look and said i do have a herniated disc (C6-7, if i remember correctly) but that wasn’t at all what was causing my symptoms and pain! I could have told him that before going through that machine… i asked him about my styloid ligaments and what he thinks about the calcification. I had printed out my 3D slicer pics above. He asked me if I at least knew where the styloids are. I had to show him I know for him to take me seriously. I asked are they calcified, he said yes, like in every person on earth i asked him to measure the left side: calcification 1,9cm and total length 3cm. He said its normal, nothing to worry about. Ok… so, back to my ENT the following monday, i think he is really having a good challenge with my case! The radiologist noted the herniated disc and styloid measurement on his report. My ENT said it can’t be ES and if he did open my neck up and take out what needed to be taken out, it wouldn’t help as ES surgery isn’t successful. He said he is going to get hold of the radiologist to discuss. I know, a lot of talking going on
So he did and called me back a few days later. They want me to go back for another MRI, of the brain this time, next week. He didn’t seem worried, he just wants to rule out as much as possible.
I am trying not to stress out, i have noticed that when I stress, my pain and symptoms worsen. But this ES is really “funny”. Every day i have new and different symptoms that come and go. One of my bottom teeth has been sore for 2 days, this morning I tapped on the tooth and my whole neck down to my collar bone went wild, the muscle jumps around, its hilarious (not)! Maybe the trigeminal nerve?

When one has calcified ligaments, can they be felt under the tongue? If i put my finger right at the back under my tongue, can you feel them? I can feel something hard on each side, which is quite painful. Is that even possible?

I went through the updated doctors list again and saw there is a doctor Schubert in Bern, Switzerland who is on there. I cannot find any other info on here about him, do you know how he made it on the list? Has he helped someone to get an ES diagnosis or has he done ES surgery?

These last 2 days, pain has been easier to deal with, i am taking it real easy and trying to avoid stress so that i dont need to take medication. The ENT gave me some painkillers with codeine (didnt work) and told me to try tramadol (havent yet as that stuff is really strong and somehow i know it wont help…). I have small kiddos, i don’t want to try meds and have to deal with any bad side effects
Sorry for any mistakes, as i am writing from my phone and thanks for taking time to read my exciting adventure

[Isaiah_40_31]

WOW, Bubble, you’ve been on quite the journey these last few weeks. I must say, I appreciate your sense of humor & the ability to laugh at the lack of support on your doctor’s part. I also applaud you for being willing to look further. In my opinion, any calcification on the stylo-hyoid ligaments is worthy of note because it doesn’t belong there, EVER, & will impact the function of those ligaments by tethering them so they’re somewhat/fully immobilized. That is part of what causes ES symptoms. Your doctor seems to have been dismissive of the fact or did not notice that you have calcification on your ligaments at the hyoid bone end. He only seemed to note what’s at the styloid end which in his mind is insignificant. Obviously you know he’s mistaken about ES surgery not being successful.

By the way, a brain scan seems like overkill unless there is some symptom you’re having that seems suspicious to your doctor. I’d question what his motive is for wanting that before just going & getting another MRI.

When a doctor has made it on to our doctors’ lists it’s most often because he/she has done ES surgery for someone on the forum. There may be a couple who are there because they diagnosed ES & are familiar with it. There have been others from Switzerland on here in past years, but I don’t know who gave us Dr.Schubert’s name. You can try searching older posts (using the magnifying glass). Start by using “Switzerland” as your search word & see what comes up.

AHA! You’ve learned the “magic” of ES! Another day, another new symptom. Symptoms come & go & change. They get better & worse. A great, nearly symptom- free day will be followed by a totally debilitating day. There is no rhyme or reason to ES symptoms.

Tooth pain can be a symptom of ES. The mandibular nerve which innervates the lower teeth is one branch of the Trigeminal nerve. The Trigeminal nerve is often irritated by calcified s-h ligaments or elongated styloids. Also, I (not a doctor) believe that you can feel calcified ligaments or elongated styloids back by the base of your tongue. I could feel my left elongated styloid back there before I had surgery. It did hurt when I poked it.

I’m glad your last couple of days have been more tolerable. I second your intuition about Tramadol. It’s a powerful drug that might not work, & will likely knock you out - a condition you don’t want to find yourself in w/ small kiddos at home.

I did enjoy reading your exciting adventure & hope your future adventures are more productive from a diagnostic standpoint. I’ll be praying for that.

[Jules]

So sorry that you’re being messed about, & having these extra tests! And so frustrating that these doctors keep saying ES surgery doesn’t work- it does when the surgeon is competent!!
I get toothache regularly from Trigeminal Neuralgia- usually a couple of molars, but sometimes it moves about! I think we all get days where symptoms are worse, or new ones appear, I agree that your sense of humour is great!!
Someone has obviously mentioned Dr Schubert, but I can’t find who! Nothing comes up on the site search, I’ll keep trying to find out for you, sorry!
Big hug to you, & your kiddies…