I am going to see a doctor in March but wanted to ask here first. I was diagnosed with ES in November of 19. I’ve had the pain in the left jaw for about a year. My arm and leg went numb one day after carrying my kids through a store. I had an MRI done of the spine and Everything looked fine. When I lay on my left side to sleep (arm up under my pillow) my arm and leg go numb. So I only sleep on my right side now. But the numbness is pretty much constant when moving or holding things. I’m going to speak to my neurologist again but he doesn’t have a clue about ES. When I told him I had it he was very skeptical and looked at me like I had two heads. Has anyone experienced this symptom before or is it completely unrelated? Thanks!!
Arm numbness /or weakness can be down to pressure on the accessory nerve by the styloids. Anatomically, it wouldn’t seem possible that ES could cause leg numbness as the nerves from the spinal cord to the legs come out much further down the spine, but quite a few members have complained of this too.
Unfortunately if your neurologist doesn’t know much about ES then they wouldn’t understand the wackier symptoms it can cause!
1 Like
Thank you for this reply! It has been a stressful three months trying to figure out the numbness. Maybe they are separate issues? Hopefully my surgeon can answer questions when I meet with him!
mdbnov,
I’m in Jules’ camp. The accessory nerve is often irritated by ES (along w/ several other cranial nerves) & can cause the numbness you have in your arm, but the nerves to the leg come from the area of your lumbar spine (down by your pelvis) so pretty far away from your neck. There is a tiny possibility that the angle of your styloids has somehow caused them to push on or misaligning your cervical spine & this is creating misalignment throughout your spine which in turn has caused pressure on the nerves in your lumbar plexis (where the leg nerves exit the spinal column & head down into the legs). This theory is a huge reach but is not impossible. I guess it’s a wait & see proposition i.e. if you have ES surgery, see which symptoms improve & which remain.
1 Like
I’m going to add that since the spinal cord obviously runs the full length of the spine, if there is impingement at the top end, the lower end nerves can be affected as well. This goes hand in hand w/ what I mentioned about the possible impact of an elongated styloid process on the upper cervical spine.
I had completely numb left arm that was always blamed on my neck. Neurosurgeon says neck is fine. Last week I had the left styloid removal and my arm numbness has been gone since I woke up from surgery!!!
3 Likes
Thank you for sharing your experience DeniseD. This is very helpful & has held true for several of our members.
Do you mind sharing the name of your ES surgeon?
my ENT surgeon was Dr. Annino at Brigham and Women’s Hospital in Boston, MA
My list of symptoms that were gone after surgery…
since my surgery on Tuesday morning 2/18/2020:
No more ear pain
No more choking in the night
No more feeling of something stuck in my throat
No more breast pain
No more pain that was thought to be costochondritis
No more occipital neuralgia
No more blurry/double vision
No more pins and needles or pain in my left arm
No more headache
No more pain in left shoulder
No more whooshing sound from the compression of the jugular and carotid.
No more tingling feeling over my head.
No more gravelly voice.
1 Like
DeniseD
WOW! 
That is a comprehensive list! I’m so glad all those symptoms left w/ your styloid(s)! We hope & pray for that kind of result for all of our forum members.
Glad you’ve had good results from surgery! Thanks for sharing, & best wishes for a quick recovery! 
Great news on your surgery! Can you explain the symptoms of breast pains and costochondritis? Was it in the center? Sharp or squeezing? I get chest pains and I think it’s my heart but it all started with eagles.
I had shingles last August. After which I had post herpatic neuralgia. When I started with the pain in my chest I attributed it to the post herpatic neuralgia. It was then directly on my sternum and like you I wondered if it was my heart. I went to the doctor and he diagnosed me with costochondritis. A few weeks later I was getting horrible pain in my left breast. Like a hot poker. I made an appointment and saw my gynecologist who examined me and sent me to a breast surgeon to possibly biopsy it thinking I had Paget’s Breast Cancer! After a diagnostic Mamogram and ultrasound they decided to wait on the biopsy as nothing showed up. Then I had my surgery with Dr. Annino and all of those pains are gone!!! It was a roller coaster ride of emotions and it’s just crazy how many symptoms Eagles Syndrome can cause.
4 Likes
Hi DeniseD,
This is a very impressive list of symptoms that remitted after surgery! A great reminder that those who limit their conceptualization of ES to throat pain are missing the mark. So glad you are better!
This is wonderful! I have been having some chest pain for about a week and I have shoulder, neck pain and a slight headache for the past week. I had both styloids removed in April 2004. I suffered with ES for 17 years and it was miserable. Just like a lot of us, doctors just didn’t have a clue about ES. I had the first symptoms on December 24th and 17 years later, I moved to OKC and that’s where I finally got diagnosed by Dr. Greg Krempl at University of Oklahoma (Otorhinolaryngology Clinic).
I have set-up and appointment with him because I am now having upper shoulder pain in both shoulders (it feels like I am carrying 2- 50 pound bags of sand and my neck feels stretched and I am having headaches. When I had my surgery, I asked my surgeon would this ever come back and he said, it could…That would kill me!
I have Diabetes and now I have Hypertension so, along with Diabetes, I have severe neuropathy in both hands and my two feet so, I am in constant pain. I do not sleep well and I do not want to go through the ES pain ever again. That is “Hell on Earth”…Dr. Krempl is booked till July 14, 2020 and that is with me being a patient of his.
Life is miserable for me right now. I just take it one day at a time. I am grateful that at least I now have this website to get encouraged and get information. We’ll see what Dr. Krempl decides to do? If you ask me…Coronavirus is a piece of cake compared to ES. I need encouragement and prayers.
Have you asked Dr. Krempl’s office to be put on their cancellation list? Most doctors’ offices keep one but they don’t offer it, you have to ask to be put on it. Often, having your name on the list enables you to get an appointment much sooner than scheduled.
It sounds like your vagus, accessory & maybe trigeminal nerves are irritated. Headaches, depending on where they are in your head & what they’re like can be caused by nerves or vascular compression (which elongated styloids can cause). Look up Two Minute Neuroscience on youtube & watch the videos for the three nerves I mentioned. The videos will give you good information.
I did tell them to put me on the cancellation list. Biggest problem for me is…it feels like I have had my arms above my head for weeks and when I eat and chew, I get exhausted from chewing…I am tired and I have had a headache from it.
I’m sorry you’re back to suffering. I hope the symptoms subside a bit as ES symptoms are prone to do occasionally. I’ll be praying for that.
So sorry that you’re struggling at the moment; I hope that it’s not ES again & that you can find an answer…I have the tiredness/ weakness in my arms, especially if I have to raise them, I think it’s nerve damage following the whiplash injury I had years ago, not related to ES at all.
Thinking of you & hope that yiu can get an earlier appt.