I’m new to this site. My symptoms started after my car accident in which I was t-boned. Within days I felt something stuck in my throat and with a contact battle with my GO I finally diagnosed with ES by CT scan 8 months later. It’s almost been 3 years since my MVA and have seen Dr Gupta (Hamilton) who advised me he would preform surgery but doesn’t know if it will help me. I’m still deciding as my life as been a nightmare ever since. I have the feeling of something stuff in my throat always, numb soft palette, tongue has odd sensations, heartburn all the time like I’m having heart attack. I cough constantly as the feeling in my throat triggers it and the episode involves my gagging, chocking and my heart races and feels like I can’t breathe. When it’s over i feel drained my diaphragm hurts from the coughing and can’t control my bladder with the coughing so I’m dealing with urinating leakage. I’ve just been diagnosed with a type of Ménière’s disease (inner ear damage) that started with tinnitus. I feel hopeless at this time and my depression & aniexty are always at a high level. I can’t not think about how I feel all the time with the symptoms that are present always. I have pain in my neck and left side of skull. My family doctor doesn’t understand makes me feel like it’s all in my head. I feel so discouraged and hopeless for a cure. Feels good to get my thoughts written and look forward to any response as I would appreciate any feedback.
I have all of those symptoms including the tinnitus, vertigo, fast heart rate, exhaustion etc … all eagles related. Waiting for surgery my styloids have touched every nerve in my neck. There are lots of more knowledgable people on here and you can search on symptoms xx
I really feel for you- many of us on here have been fobbed off by doctors & made to feel like we’re hypochondriacs, so we do understand.
There’s lots of info in the Newbies Guide section , have a look for the discussion ‘ES Info- common symptoms & what might cause them’, as there’s a good explanation of which nerves can be affected by styloids compressing them. Fir example the Vagus nerve can be affected, which can cause stomach problems, and heart arrythmias. Nerves in the throat can cause the feeling of something poking or stuck, & the facial & trigeminal nerves can cause pain in the face, jaw & teeth. Blood vessels in the neck can also be compressed which can cause dizziness, fainting, pain in the neck & even eye pain.
The good news is that you have been diagnosed- maybe you could print off some of the info about symptoms & show it to your GP if they don’t understand! But unfortunately there does seem to be a reluctance to operate by doctors in Canada. A skilled surgeon who removes as much of the styloid as possible can help to cure ES. No doctor will guarantee that all your symptoms will go with surgery, but there are usually good outcomes. Surgery is the only cure; steroid injections can help, but aren’t a permanent solution. In the Doctors Info section you can have a look for any Canadian doctors you can be referred to. If not you could try being referred to a Skull base surgeon/ Otolaryngologist as they operate in the same area as the styloids. Otherwise unfortunately some members have resorted to travelling to the US for surgery, I don’t know if thst’s an option?
Oh my goodness…words I could have written myself! You are among friends now and we all hear you AND believe you! You are on the right track and though it feels like forever, you will find peace with this at some point. PATIENCE is key now that you know what it is and that you will not die from it. Even though there are days when you just can’t stand it, find comfort in the fact that it isn’t terminal and you are NOT crazy! There are many here who will offer kind words of advice and reassurance. Welcome my friend…
Reading your replay brought tears to my eyes, I feel so happy I have found this site. I’ve pretty much lost all my friends, don’t want to talk about my health issues to my two son’s. The more doctors I see the worst diagnosis I get. The last neurologist said basically all my symptoms where from migraines. After reading all the positive messages I had the strength to call and book surgery. No turning back now.
Good for you, Ilovemysheepadoodle! Please make sure you know the approach Dr. Gupta will use & confirm that he will remove the styloid as close to your skull base as possible & smooth the tip of anything he leaves behind. Also make sure he will check your stylohyoid ligament for any calcification & remove it, too, if it even has a little spot that is calcified as that will potentially set it up for further calcification & later problems for you if it stays in place.
Doctors have differing opinions as to what constitutes ES - elongated styloid or calcified stylohyoid ligament or a combination of the two is the correct definition. Elongation of the styloids isn’t always a requirement for ES symptoms as styloids that are normal length but extra thick, twisted, pointed or angled can also cause problems. It’s irritation of the cranial nerves & vascular tissues in that area of the neck that cause ES symptoms & they can be far ranging & seemingly not connected as you have noticed.
Please ask questions & read as many posts here as you can. As Jules recommended, the Newbies Guide has tons of information that will be helpful for you.
Thanks for the great information, I will definitely ask questions.
Just remember the patience part I mentioned earlier…very important. Educate yourself and read as much as you can on this site. There are several very different approaches to surgery for this awful thing. I was also anxious to get on with things as soon as I finally got my diagnosis but there is much to know before jumping in so take some time and see what you can learn! Again…so happy for you that you know what it is and that you have found this life saving place to learn and share.