Well because ive had on and off neck issues since my accident im not sure whats from that or possible early sings of styloids. All i know is after a very anxious month of tensing and stress and globus sensation it tuened into all the symtoms i have now. I have on and off ear aches like an infection but my ears have been checked over and over, sinus issues but no allergies im aware of, throat clearing and post nasal drip that no meds help, throat pressure and tightness in tonsil area, on and off tongue tingling and tightness in left side thats more constant lately, random mild headaches in temple region that resolve quickly, other wise no headaches, dizziness and vertigo randomly, pain under my ear if i tilt my head to the side like something is poking on the inside and like a crunching sound when i do it. I have medicaid since covid started cause im self employed so im not sure how insurance will work for me if surgery is an option. I have noticed the start of very mild and quick ear aches on my right side but thats it so far. I have heard that once one side is resolved a lot of times the ither side will start up too and my lengths are not far apart
I enjoyed reading your conversation & am so glad to see it on the forum! Thatâs what we lots of here! We love it when our members are able to encourage, validate & share information with each other!
Chill, you asked how long my styloids were & the answer is I have no idea. I keep meaning to go back to the radiology lab & ask for my report but Iâm not sure the radiologist measured them. (S)he may have just diagnosed me w/ elongated styloids. Dr. Samji never mentioned length & I didnât think to ask.
one_day, your right-sided facial pain is likely being caused by irritated trigeminal & facial nerves. You can Google images of the locations of these which will help you understand better why you have pain where you do, if they are the culprits. The eye twitching & droopy eyelid can also result from irritation to your facial nerve. On the doctor front, you can bill your insurance for your consult w/ Dr. Samji. Very often medical insurance will pay all or part of the cost of a video consult especially for a rare condition.
For both of you, the tongue issues are likely caused by an irritated glossopharyngeal nerve but could also be based in the hypoglossal nerve. Both can be irritated by ES. Swollen glands or the feeling theyâre swollen is also a fairly common ES symptoms. Blood pressure, heart palpitations, racing heart, dizziness & breathlessness (feeling winded when you havenât done anything to make you that way) can all come from vagus nerve dysfuntion (I had all of those symptoms w/o vascular compression).
Nerve symptoms are not always pain, they can be numbness, burning, tingling, pressure-like sensations, âlightning boltâ type shocks among other things. Symptoms of an irritated nerve can be constant or intermittent depending on how the nerve is being stimulated.
The question came up about stylohyoid ligaments vs elongated styloids. The styloids elongate as the stylohyoid ligament calcifies. It most often calcifies in a direction going toward the hyoid bone where it attaches on the other end. Sometimes it calcifies from the hyoid bone up toward the styloid instead. In that case, there is no styloid elongation, but the person still gets ES symptoms because the calcification irritates nerves & tethers the stylohyoid ligament so it can move as it needs to.
It is true that the remaining styloid is known to ramp up any symptoms itâs causing after the first styloid is removed. These symptoms can even cross over to the removed styloidâs side of the body. ES presents a real challenge for both the patient & the treating doctor.
I hope both of you are able to find the right doctor to help you ASAP. Iâve been where you are but not for nearly as long as either of you. Itâs a tough place to be, & Iâm sorry for what youâre going through. 
Thank you for your response! I very much enjiy discussing symptoms and others experience especially while trying to be patient for my own diagnosis. But it helps give me reassurance. I remember when i was completely normal as of may last year and I miss that person. I miss being carefree and my symptoms not consuming my life based on what ifs. I just want it to be over. I want to enjoy my kids, my husband and life again.
Chill,
Youâll be able to get back to where you once were. Having my styloids removed gave me my life back. It was about a 2 year journey for me but I have no regrets. I made some amazing friends along the way on & off of this forum. 
I definitely have learned so much about the himan body and this syndrome than i did before. Honestly doctors are impressed with my knowledge which makes it a bit easier to understand and them not talk to me like im dumb.
Thank you both! I have learned a lot today. I too just want my life back. Itâs been so long I donât even remember how it used to be but it was better than this lol. I have to rely on my family to help with almost everything because Iâm losing my independence. My 83 year old grandmother can do more than I can 
.
Your symptoms sound very familiar to me. Iâm trying not to get too excited at the prospect of feeling better in the near future. Do you have any fears about surgery? I wish I wasnât so apprehensive.
I think my only fear of having surgery other than ive never had a major surgery is possible nerve damage or it not helping.
Chill,
Those are legitimate fears, but most of our members who have gone to experienced ES surgeons have had good outcomes.
Yes i love reading the success stories!
I just read all this and want to thank the members here for the dialogue. I built a brilliant career in healthcare and public health from perseverance that I lost to what I can only describe as a maelstrom of every neurological and physical ailment at once. Despite working across over 30 specialties and being connected to healthcare around the northwest, I have been talked down to and blown off by dozens of doctors for six years now as Iâve barely held the scraps of my life I have remaining together. Reading this dialogue and the similarities to my story give me hope. Iâve been down the CSF, IIH, and other pathways, and likely have vascular ES. I recently found old imaging of mine and figured out how to 3D render it using radiology software, discovering extremely elongated right styloid that appears to directly traverse my external carotid and travel to my spine and nerves. I have some hope, and enjoy reading othersâ stories who do, too. I fear nothing after what I have survived and am now often waking after not breathing at night, apparently due to central apnea. It seems Iâm getting answers and finding this group perhaps at just the right time. I had scheduled an appointment to assess for craniocervical instability this month with a doctor who happens to also be familiar with ES, so crossing my fingers I can share good mojo back to group members here in the future. The slightest movement of my neck and spine sometimes rapidly change my condition, and Iâm now realizing it could be due more to styloid impingement. YayâŚ
Be well.
Hi kforssen,
Iâm so sorry for what youâve been through & how itâs impacted your career. Itâs terrible especially considering that youâve been involved w/ the medical community for so long. One would expect a bit more compassion & perhaps âthinking outside the boxâ for a fellow âteam memberâ. Itâs great news that youâve found someone who can check for craniocervical instability & is familiar w/ ES. I hope this doctor is able to either refer you to a good surgeon or is well-practiced w/ ES him/herself. Weâve had a number of members from your state whoâve ended up traveling out of state for ES surgery due to lack of experienced ES surgeons there. We would love the name(s) of some who are more local for you all.
Hello , Your symptoms are very similar to mine my friend and like you I have been through the ringer ! Ultimately I diagnosed myself went to a neurologist and he said he never heard of ES but after he researched he does feel I have it⌠Had no tongue issues till about two weeks ago left side top going numb intermittently. Finally going to Ent this month scared as hell to get surgery! What surgery procedure does your Dr perform .? How are you doing ? Hereâs the list Iâve been to 3 neurologist 2 orthopedic surgeons 1 neuro surgeon a Dental Tmj specialist 4 chiropractors 1 primary care
Etc. I was literally pointing at my styloid ligament telling them it hurts right here and when I touch it makes my symptoms go bonkers! Sorry for the rant,
Hi there! So I havent met with my Eagles specialist yet. My appt is this Tuesday morning June 8th. 
ive been dealing this for a year now and 4 ENTs missed. I actually have to drive to Utah for this ENT. I will update you after that appt. Not sure his surgery preferences but I personally want external. They want me to do an audiogram test because ive had on and off ear aches ehich are very infrequent now but ill do anything to get this over with. I find the left side of my tongue acts up the most when i tilt my head a certain way as it shoves the styloid into tissues and nerves im assuming which is reassuring cause when its constant it makes me think bad thoughts. My jugular is also being pinched between my styloid and c1 so im hoping its removed at base. Ill update soon! Dont be suprised if your ENT isnt educated. You need someone specifically educated on ES. 4 ents missed mine. I diagnosed myself after turning my CT into 3D after it was suggested by a member in a group i was in. Good luck to you though!
I had external by Dr. Samji. Iâm 4 weeks out and have more pain now than before but I think some of that is just the process of healing. The pain that caused me to do the surgery remains unchanged. I hate to say that, but I think I need to be honest.
Honesty is good. Itâs important for our members to know that not everyone gets immediate relief after ES surgery, & many of us whoâve had bilateral ES have actually felt worse pain after our first surgeries because symptoms caused by the remaining side ramped up.
We had one member several years ago who had significant pain still 3-4 months after surgery. She ultimately was Rxed Gabapentin by her surgeon. It took a month of working w/ her doctor to get the right dosage figured out, but once the dose was right, she posted here that her pain was gone. She was ecstatic!
Unfortunately, for some people, nerve pain does take a LONG TIME to go away & sometimes never does fully. You are also right in saying nerves can cause extra pain when theyâre healing. I had stabbing pain, mild electric shock pain, numbness, tingling, feelings like my skin was cold alternately w/ it feeling very warm as my nerves healed. The sensations werenât super intense, but it was odd & sometimes very annoying.
Healing is a journey. It took me about a year after each surgery to realize the full extent of nerve recovery, & now even beyond that, Iâm still noticing little improvements & positive changes in the remaining pain I have.
Trust your body, one_day. It will continue to work at healing. Itâs a very gradual process. If your pain lingers, & you decide not to have your other styloid removed, there are a variety of nerve pain meds you can try. They can take a few weeks to start working so it is a commitment, but they can make a big difference when youâre really uncomfy.