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!