Hello, my name is Eric. I am starting this thread in hopes that others will be able to relate to what I’m going through. I am also hoping to talk with others for support. No one I know seems to understand what I’m going through and to be honest, I’m scared. Anyway, here is my story.
I have been having a lot of strange pains for a couple of years now. Since the start of 2019, I have been to the emergency room 5 times. Each time none of the doctors knew what to tell me. Some suggested TMJ while others suggested trigeminal neuralgia. They would give me steroids and advise me to see a dentist. When I finally got a primary doctor, he said all the same things.
Two days ago I went to the dentist. After waiting over an hour the dentist comes in. She seemed so excited to show me what she found on my X-ray. She was acting like a little child opening presents during the holidays. She showed me that I have two calcified stylohyoid ligaments. One on each side. She made comments about how rare it was and seemed really happy about it. I wasn’t amused. After I left I showed my doctor the X-ray and he confirmed it. He is referring me to an ear, nose, and throat doctor for surgery.
The pain that I am having is mostly on my right side. I have severe pain from my forehead down to my neck. I have shoulder pain, pain in my collar bone, and my right arm goes numb. The pain is so severe that I don’t know what to do. If I get too hot, my face swells. If I get too cold, the muscles in my face and jaw tense up. Either way I get shooting pains. I can only sit one way, and I have to sleep in the same position to prevent pain.To make matters worse, I’m worried that the issue is progressing. It continues to worsen by the day.
I am currently taking nerve medicine and waiting for the ear, nose, and throat doctor to call me. It would be nice to talk with others who are going through the same thing.
Hi Eric. Sorry to hear that you’re having such a difficult time. Being to the ER five times this year is pretty severe. Symptoms vary a lot with ES, but I can certainly relate to being in a lot of pain that doesn’t really end, having weird symptoms, being scared, having people not understand, and dealing with clueless doctors. Honestly though, being diagnosed correctly is one of the more difficult parts of ES. Things should start getting better for you soon if you are moving towards having surgery. Good luck and keep us posted.
I am sorry for all you have been through, but happy for you that you appear to have a diagnosis. Truly understand - some Dr’s dismissive and another excited. I experienced that as well.
Here is my story, so you know you’re not alone (details Dr. appts as well as one telling me I need therapy, because it was in my head):
A suggestion for you that could make your journey “easier”, there is a Dr’s list on this site (can’t find at moment, or would share) - but try to get an appt with someone who on it that has experience with Eagles. Not all Dr.'s believe in the diagnosis. If you can’t find a Dr. in your area, consider traveling or seeing a Skull Based ENT who specializes in that area of the body (Neck cancers, etc).
Best of luck! Stay strong - you are getting there!
Your misery is so relatable to all of us here in one way or another, I am very sorry for your pain and suffering. Going to the ER once is stressful enough but 5 times with no answer is incredibly challenging. Your strength and fortitude is inspiring and has now paid off!
I too was presented with incredible joy and excitement by a doctor who diagnosed me (incorrectly) with a terrible disease called Lambert Eaten Myesthenia Syndrome (similar to ALS but with cancer, a 3-5 year life expectancy). He was beaming with the news as if he just hit the lottery, i was slack jawed. I thank God every day that he was wrong and now 4 years later here I am awaiting my vascular ES surgery in late August with great hope for a full recovery once the air clears with some other complications that will be addressed after I heal from the ES surgery.
I agree that you should see a surgeon very familiar with ES. Your symptoms sound like they may involve some of the other nerves that supply the neck/shoulder/arm etc and blood vessels (can affect temperature etc) neighboring the styloid which is not uncommon and very managble in educated hands. My surgeon specializes in skull base surgery and has called in a vascular surgeon to help with the compounding internal jugular vein compression.
Sleep…we rarely appreciate it until it is gone! I too have to block my head so not to turn or let my ear fall to my shoulder otherwise I wake up with a horrific headache, pressure in my eye and deep aching/numbness in my arms. Sleeping elevated (30-40 degrees) with a pillow like the one used when you fly (horse shoe shaped) worn infront of my neck or rolling up a hand towel and putting it in the pillow case on either side can be helpful…the survival tricks we try can be hilarious
Know that you are not alone and many here will offer great advise and support. Keep fighting the good fight, let us know how things progress. Thinking of you and your family in this time
Thank you for your comments. At the time I posted this I was really upset. I’m amazed this was even discovered at all. The only reason it was discovered is because the dentist office I went to had a promotion that included an X-rays. None of the doctors offered to do them.
That was ‘lucky’! As others have said, getting a diagnosis is a major battle for lots of members, so at least you have the diagnosis.
The doctors list is in the Doctors Info section, the 2019 one. If you can be referred to someone on the list that would be helpful- just because you’ve been diagnosed doesn’t mean that an ENT will be able to help you, it’s quite a specialised surgey. Just to save wasting your time!
Hope that you get somewhere soon, & that you feel a bit less alone!
Well maybe they will start recommending them to many more having learned from you! Who knows how many other people will be helped now from your experience - thank you in advance from all of those unknown souls . I like to think of these events as little surprises to keep us going, support that lets us know we are being watched over and cared for even when we feel the exact opposite. Hope you are resting in a better place as you move forward…keep a look out for the next surprise!
I’m jumping in on this discussion a bit late but wanted to say I had a similar experience when diagnosed w/ ES. I was very blessed to be diagnosed by the first ENT I saw. He was practically dancing he was so excited. Without a CT scan he could only speculate but when my scans were in his hands, what a glorious day that was! He discovered I had not ONE but TWO elongated styloids & partially calcified ligaments. It was like birthday & 4th of July & Christmas all wrapped into one. Sad to say, I abandoned him & went to a more experienced ES surgeon to have my surgery but he was sure rarin’ & ready to do it.
So your facial pain is probably from the trigeminal nerve, your neck/shoulder pain can be caused by an irritated accessory nerve. Your arm numbness to your thumb could be caused by irritation of your C-6 spinal nerve i.e. this nerve comes out of your neck & down your arm. Because ES causes internal inflammation that could be putting pressure on your C-6 nerve thus the numbness & tingling in arm & thumb. JustBreathe gave an interesting explanation for your different reactions to heat & cold. ES does progress w/ time but not usually at a lightning pace. It’s a gradual process. Noticing more or worsening of symptoms is pretty normal.
There is one doctor listed from your state on our ES Doc’s list -
•Dr Mark Williams, Southern Hills, Nashville 615- 832- 2200 http://entson.net/contact-us/
I can’t find any posts where someone has mentioned him, but he must have seen & done surgery on a past forum member for his name to be listed. That doesn’t necessarily mean he’s super experienced w/ ES, but it does indicate he might be a good person to contact.
It’s strange how excited these people get over it. I’m not happy about it at all and they are doing back flips. I would gladly trade places with any of them. They can have it.
I did finally get an appointment for an ENT. I had to go to the emergency room again but at least I got it. My appointment is in July.
Well that’s good news, eric! Glad you have an appointment. I hope the doctor you see doesn’t dismiss ES or you. Nothing more discouraging than that when you’re looking for help!! If you can, find some published articles about ES that mention the types of symptoms you have. There are many links to articles in our Newbies Guide or you can use the magnifying glass icon above to search for other people’s posts which might also be helpful to you. Print off articles, highlight the parts that align with your situation & have them ready for the doctor if necessary. This can be helpful, as it shows you’ve done your homework, & you aren’t just speculating about your situation.
Hi Eric, I am in the same position as you, in the UK. I have had symptoms for 6 months and I have lost count of the number of times I have been to see a doctor. Even ENT and neurologist are lost as to how to treat this other than with nerve medicine. I have appointments scheduled with two consultants on this forum’s list, in the next two weeks, paying privately, to try and get surgery moving along. I believe I have vascular ES and it’s the scariest time of my life. I hope you can stay well and safe until you see the ENT.
I am so sorry to hear that. I hope you are able to get surgery done soon. For me, this has been a terrible weekend. The nerve pills the doctor gave me made me hallucinate. I think I scared my daughter. I don’t understand why doctors do not take this more seriously. This is a nightmare. I thought having kidney stones was bad. I was wrong. I hope you are able to get the help that you need.
Have to agree that it is a horrible condition. I try to keep positive, thinking that surgery will relieve symptoms, but then surgery fills me with dread as well. I am ok on amitriptyline, it is masking a lot of the pain but the mechanical and vascular pain is real and scary. it took 6 weeks to get past the side effects and psychological effects of amitriptyline. I now don’t know how I will ever get off it. I pray for you that you get surgery and relief
Out of curiosity, what nerve medicine did you react to? I only ask in that I had awful time getting off neurontin and was told most people tolerate taking it and do not experience withdrawal.
My advise when the time comes (months after your surgery) for “getting off” amitriptyline is to ween off very slowly. With neurontin I got liquid form and went down 25 mg every 3 weeks. I was a long a painful journey, but when I reduced quicker than that the pain and other side effects just compounded the ES.
Thank you, I guessed I would have to try coming off slowly. I am not normally a pessimistic person but this condition is bringing out the worst in me! I am a long way off being able to stop these tablets for the time being, just grateful for the small amount of relief they are bringing, that and some skin coloured foam ear plugs which help counteract the referred ear pain!
Yes, mg. My Dr. didn’t even know it was available in a liquid. The pharmacist suggested it as the weening was so bad.
My neurologist said to go down a hundred every couple days. The pharmacist suggested 100 a week, felt safer so I tried. Started at 1200mg. By the time I got to 700mg I was a mess and it took several months for me to be brave enough to go down again. So 700mg/25mg = 28! Yep I went down 25mg every 3 weeks 28 times. Still wasn’t pain free, but it was doable.
Thank you for the clarification & great advice. Weaning off meds of any type can be unpredictably hard. You’ve suggested a simple path for someone who’s struggling w/ this.
. I like to think of these events as little surprises to keep us going, support that lets us know we are being watched over and cared for even when we feel the exact opposite. Hope you are resting in a better place as you move forward…keep a look out for the next surprise!
Sad to say, I abandoned him & went to a more experienced ES surgeon to have my surgery but he was sure rarin’ & ready to do it.