Sewmomma,
I know she is a relatively new practitioner. Dr. Baugh of Cleveland, TN. I don’t believe she is a specialist, but I’m having some lymph node involvement. So I’d like to rule out anything else. Perhaps being a newer practitioner, she may remember studying about this “rare” 
syndrome. If not, there are two senior practitioners there that may assist. Gah. These tests are so so costly! If they’d listened to us in the first place…
Thank you, Gods_blessing! I hope, hope, hope it’s nothing other than your styloid or some irritation caused by that.
Godsblessing,
It is so frustrating when doctors don’t want to listen. There is also a real problem in healthcare today, with doctors of both genders scoffing at women patients and dismissing their symptoms. I tend to have stomach issues as well, so I understand your pain. Some of it may be related to a medical condition, for sure. Some may just be due to stress and the difficulty of having ES. Which is actually a nice thought because it would go away once the ES is eliminated! I wish you well on your journey.
Hi there. I hope this finds you well. I lived in Tampa when I was going through the worst of ES. Totally misdiagnosed and eventually referred to a psychiatrist. Nice. Right? I was in pain. Headaches. Soar throat. Unbearable ear pain. At one point I wad having stroke like symptoms. I finally had a 3D ct scan which caught the elongated styloids. I researched ES and found a surgeon in Palo Alto CA. He said I needed the left one removed because it was so think and long that was causing my symptoms. He was a great surgeon. However. My symptoms on the other side persisted. Dr Cognetti in PA was my life savior. He finally called me after reviewing my CT scan and said he did not understand why the surgeon did not remove the right one first. Although the right one was smaller and seemingly less intrusive Dr cognetti could see that the stylus was curves and wrapping around my spinal cord. 10 specialist surgeons looked at the same ct. including three in Tampa. No one caught it. I flew to PA. Had surgery and I have never felt better. That man is kind. Nice. Smart as all get out and is a lead researcher and surgeon in this area. He sees the whole picture where it may be compressing what area. Please consult with him. I would have regretted it if I had one of those wack jobs in Tampa touch me They made me feel crazy then
When I was finally diagnosed they said that I really shouldn’t be in as much pain as I was and surgery probably wouldn’t help. The “ most experienced “ surgeon in ES has done
Less than 5 surgeries for this. Cognetti is my savior
I know Cleveland right up I-75!
Young doctors (not to generalize too much here) are typically eager learners and still in that curious/research mindset. I have found over the years with a medically fragile child that sometimes I get the feeling from older docs that you can’t teach them anything new. But there are great older doctors too out there.
Keep us posted!!!
The area of the neck where elongated styloids/calcified s-h ligaments exist is very vascular & contains some of our cranial nerves as well as other nerves that innervate our neck, shoulder & arm muscles. It’s entirely possible that your styloids or calcified ligaments (sorry I’ve forgotten which you have) are irritating or compressing nerves that affected the muscles that spasmed last night. That episode sounds very painful & unsettling. I get periodic “Charlie” horses" in the muscles on the left front half of my neck so I sympathize. I thought it was a consequence of ES surgery, but in retrospect, I think it’s from a diuretic I’m taking to help control the symptoms of Meniere’s Disease. I also had odd inflammation from ES though mine was in my mouth not external.
Your final thought is good. It’s possible the precursor to your episode last night was fatigue from a long day which started the chain of events you experienced. I hope it was a one time event & that you’re able to get your ES taken care of soon.
I hated when I had to wait SO long to get more information. I felt like I was walking through a dessert waiting for the next water station/doctor’s appointment to come around 
Meg44,
I am sorry to hear about your troubles! I was secretly hoping to find a good doctor there so I could be in Florida. Love the weather and miss it horribly! Thank you for sharing your information with me. I’m glad your journey had a happy ending. Take care.
Brooklyngirl,
Here’s to hoping that painful incident doesn’t repeat itself. Best wishes on your search for a second opinion.
Sewmomma,
You got it, girl! I-75 is my main line home to Florida. Let’s hope my ENT is informed and interested enough to assist me. I’m looking forward to hearing what she has to say. After her, if it doesn’t go well, I’m going straight to a specialist. Take care.
Hi BrooklynGirl,
Is the surgeon you mentioned the person in Queens who did a recent ES surgery for another member on this forum? It’s important, no matter who you choose to do your surgery, that you know what their philosophy is for styloid/ligament removal i.e. Do they use the intraoral or external approach? Do they “snip the tip off” i.e. simply shorten the calcified ligament or styloid or try to remove it completely? Do they do bilateral surgery in one fell swoop or require 2 separate surgeries? If doing the external approach, do they use appropriate instruments to monitor nerves during surgery so as to protect them as well as possible? If surgery is external will the incision be made in a neck crease so it’s less visible when it heals? (Sometimes this isn’t possible, but most surgeons will try to make the most discreet incision they can.) You get the idea. You need to be as comfortable as possible about your surgeon’s approach to the surgery as well as level of experience.
You can always get a second opinion from one of the more experienced ES Doctors by scheduling a phone consult. There is a fee for that and it’s been mentioned on here that insurance will often help pay even for a phone consult. Your 3 best options would be Dr. Samji in CA, Dr. Cognetti in PA, or Dr. Milligan in AZ.
Isaiah hit the bullseye with those excellent points about a surgeon. I walked away from a surgeon who said “I’ll do it but I don’t think it will help resolve the click you are experiencing.” That’s a hard pass on someone who wants to cut me open with little to no faith that it will go well. Don’t ever feel “stuck” with a surgeon. Although maybe some people are really limited geographically and that’s got to be tough.
Isaiah, I cant thank you enough for the list of questions and considerations. I have a call into Dr. Cognetti in Philly for a consult. I looked him up. He has a small publication of a study he did. I am looking forward to the consult.
A side note - I am have some dental work done. My dentist did not know of ES but after he researched it he believes that much of my pain could be attributed to ES. There is some decay in a tooth so it does need repair but the tooth may need a root canal - my dentist said, “lets wait on the root canal until the ES gets resolved.” He understands!
Thank you again for your help. It is very much appreciated
Gods blessing, I am sorry that you are having trouble with your stomach. I had similar issues a few years back and did the scope procedure. He didn’t find much - some acid reflux . I am not sure if it was related to ES. He did say that I was a mouth breather (sleeping on back propped up will do that) and that alone can increase the stomach symptoms. I also worked with a nutritionist and did the elimination diet to see what foods may have been causing problems. Some things that helped my stomach: drinking aloe vera gel (it takes getting used to), coconut water and apple cider vinegar (with the “mother”) mixed with water.
When I started the process of “what is wrong with my neck” over 9 months ago I was shuffled around from specialist to specialist. It wasn’t the flu or sinus infection, though it was treated as such. When the treatment didn’t work they sent me to an infectious disease doc - she took 10 vials of blood. She scared me beyond scared when she said that I needed to see a head neck surgeon because “if its lymphoma” it needs to be treated right away. So scared that I needed anti anxiety meds to sleep.
A CT with contrast showed the ES and was written as such by the doctor reviewing the scan - that was back in October. The my ENT ordered an MRI. It found two bulging discs and sent me to a neuro surgeon for consult. The neuro surgeon said that he could fix my discs with surgery but the neck pain was not related. (Thank you, next)
I went back to my ENT and I dared to complain about nerve pain in my face - so now I am waiting for my appointment with the neurologist. Crazy!!!
This could go on forever this way. Back and forth, but thanks to this site I am now in the process of getting a consult/second opinion from a prominent ES surgeon in Philly.
I am so grateful to this site and the support received.
All the best,
Teresa
Good choice, BrooklynGirl! I hope you get the anticipated support & confirmation regarding the need for surgery from Dr. Cognetti. I’m sure you’ve read on here that many people travel some distance to have surgery w/ a more experienced surgeon. If you don’t find anyone in your area that you’re comfortable with & can afford the trip to PA, the peace of mind that comes from truly trusting your surgeon will do a good job is invaluable.
I hope the consult with Dr Cognetti goes well! Your dentist was sensible to wait to see what might be down to ES or not…it’s been a long & testing journey for you, but hopefully you’re getting there!