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Eagle Syndrome - Online Support Group

Newbie here!


#1

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


#2

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!


#3

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


#4

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)


#5

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 :stuck_out_tongue_closed_eyes: 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… :confused: 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.


#6

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.

:blush: