Current update from the newbie & my path

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First off, a kind Thank You to those who’ve offered such supportive kind words and who’ve shared a wealth of information either directly or indirectly just by sharing their story here.

I have a consult on 10/14 with vascular surgeon, Dr Omlie to discuss my CT. He does the neck incision type of surgery which I’m preferring if offered given experiences here. I also have an appt with ENT Dr Ondrey on 10/21 who as I understand does intraoral surgery for this. Not my first choice but he’ll make for a good 2nd opinion.

Trying to get radiology at my pain mgmt office to re-read my CT to actually MEASURE my styloids vs. just saying “they’re definitely longer than normal”. Measurements for me are critical and it feels like they’re being sloppy. What do they consider normal vs. what are my measurements.

I am on a steroid Demze-something (why don’t they use short, easy names for meds?) to try & ease pain & inflammation with the option of 1800mg of Gabapentin (this scares me).

Just to recap my timeline in case it helps anyone else:
*March/April 2020- began feeling pain behind jaw, very dull and annoying. One-sided sore throat that returned into throat burn. I now realize my pain is more like bad neck inflammation, I can feel my left styloid is very tender, ear fullness/pulling sensation and it’s primarily tongue burning.
*May-June 2020 -ENT/PCP/GI appts which ultimately diagnosed me with LPR reflux. Was told if meds didn’t help perhaps consider surgery. Pain was still in neck like tight muscles/full ear/throat burning after trying all kinds of meds. My vocal chords were only noted as “puffy, not angry” and my scope was pretty normal so it was pretty mild IMO.
*July 2020 had Nissen Fundoplication (reflux surgery). They performed a “loose 360” wrap so I can still carry on like any normal person would. All symptoms came back after pain meds wore off. Surgeon blamed it on intubation, nerves and ultimately anxiety. I had bad anxiety but it was pain induced anxiety. Surgery has a way of flaring up pre-existing pain I’ve learned. Not to mention while trying to find my triggers to make the pain go away eating chicken, rice and bananas for weeks then being on a restricted diet after surgery I went from 135lbs down to a frightening 117lbs in less than 2 mos. Even my family was fearful. I’ll never forget how my dad looked at me when he saw me. It was horrific. My mental health was a mess. What was happening to me? Angels on my side, outside of the pain, I’ve recovered fully am fat and mostly happy.
*August 2020 - had head neck CT with contrast and all was perfectly normal. ENT experience was horrific so I asked for a Mayo referral in Rochester
*November 2020- Mayo ENT did all the usual test and found nothing. GI suggested hypersensitivity and prescribed now my 3rd round of nerve modulators. I got about a week of relief before the pain came back. Up’d the dose and got about 2 days of relief before pain came back. So I tapered off - why take them if they aren’t helping. Same results from the Gabapentin my PCP prescribed, however I now believe the dose was too low at 300mg/day.
*Dec2020, Jan 2021- decided to just wait it out…maybe it was nerve damage that just needed to heal. Never got better.
*Feb-Current 2021 have been doing PT, craniosacral, fascial release, dry needling, deep tissue, Chiro care, TENS therapy at home, heat, cold you name it. Many PTs felt it was a muscle imbalance- strengthening only magnified the pain.
*Sept 2021- Pain mgmt appt - he believes it’s myofascial. Wants to try injections. PT I’d been seeing starts quizzing me on ES. I go back and look at the notes from Pain Mgmt doc and he notes that I’m having pain in styloid area. Prompts me to message him about more imaging to review size of styloids. He replies back that he did look at my CT prior but they looked normal however he’s in process of having radiology review my CT again.
*Sept 10, 2021: Pain Mgmt messages that radiology sees that my styloids are both longer than normal, right side is longer than left so unsure why my left is symptomatic. And here is where my ES journey begins.

I admit, when this rare thing became more of a reality, I spiraled. I’ve cried, I’ve felt scared, I’ve asked “why” and “how” so many times. And I’m certain this will continue for a bit until I become more educated, get an official diagnosis and uncover a plan. Then y’all can read about my new fears :blush:.

I have attached a photo of my CT scan from the disc I obtained. Would welcome feedback on the arrow part as to whether this looks like it could be my styloid. It’s the only image that looks like anything to me

Again, whomever was in charge of setting up this group, I’m eternally grateful. I’ve been learning so much and am beside myself over the support and encouragement found here. Even in times of hopelessness, folks here find was your lift each other up. For this my gratitude goes out to you.

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Hi @Tjmhawk01, just wanted to comment on the picture… To me (I’m not a doctor) it looks like a part of the hyoid, but it’s difficult to say for sure without other pictures. If you have a chance to create a 3d model from your pics (instructions are somewhere on this forum), it would give you a definite answer.

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I’m glad that you’re finding the site helpful & supportive! I do agree, it’s not normally where we’d see the styloid process, , whether there’s some calcified ligament, not sure! It’s certainly something to ask Dr Omlie about…it is difficult to get an accurate measurement of the styloids, because of the way the imaging is done, so don’t get too stressed about that. Even if they’re not elongated the angle & width can still cause symptoms.
Sorry I can’t be more helpful with the CT…

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I appreciate your time :blush:. My curiosity is on high alert and admittedly, I’m not the most patient person.

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I’ve got to say, I agree with Jules. It looks like it could be a section Bl of calcified stylohyoid ligament. It also looks pretty thick to me. It’s definitely worth asking Dr. Omlie about it.

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Well, as fearful as I may be of the opinions, here’s what I was able to pull together. They look thick compared to other photos here and I wish I could estimate length. They say the right is longer but the left is where I feel every ounce of pain and it’s becoming increasingly painful. It’s going to be a very long wait for my 10/14 appt. But if this is indeed the source of my pain, then get these talons out!

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my right side was longer than my left and I was having significant pain on my left side, which lead Dr Hackman to question if my issues were actually ES related, it wasn’t until he saw the positioning of my styloid that he agreed to do surgery on my right side and he believes my left is asymptomatic. there was so much swelling in my neck and back of my head that it seemed to be manifesting itself on the left side. now, I’m only five weeks post op so really don’t know how much of my issues have been resolved, but I can tell you I do not currently have left side pain and haven’t since surgery. my right was abutting my carotid, so a lot of the dizziness and cranial pressure is gone right now. my neck is still sore and popping, but I have light swelling still and a wild jaw, so I don’t know if it will go away or not yet. so I am definitely an example of left side pain as a result of swelling from the right side

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They’re both wide & angled, and looks like there could be quite a sharp point on the left one, so definitely potential there to cause pain…there are some mentions in the research papers which say that the angle of the styloids can cause ES symptoms, it’s not always due to the length. If you’re concerned that you might be turned away because the styloids aren’t super long, it could be worth mentioning this & taking a printed off research paper with you to show the doctor. There should be links to papers in the Newbies Guide Section.

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We have had some members who’ve had cross-over pain, so it’s really interesting that surgery might have helped your more symptomatic side. I hope that all the swelling goes down soon & you keep healing.

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Jules,
Thank you for sharing your observation - I trust you’ve seen many scans here and have far more of an opinion than I could ever offer. I just got a memo from my pain mgmt doc that Radiology had a hard time getting length because of the CT slice but estimated at 2.8cm. My referral and CT was sent to Dr Omlie and I suspect that he wouldn’t have offered a consultation if he didn’t think there was something going on here.

Many thanks for taking time to reply.

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It is hard for them to accurately judge the length, especially when the styloids are angled. I don’t know if the doctors have noticed this like we have, but we’ve found often after surgery when the styloids are removed, they’re longer than were measured!
As you say, hopefully it’s positive that Dr Omelie wants to see you.

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I have only been going thru this since April of this year. First treated for ear infection and sinus infection. Only thing that helped was finally steroids. Then sent to ENT. Said it was tmj. Went to oral surgeon. Xray showed tmj plus possible ES. Have had ct of neck showed nothing followed by maxofacial MRI with and without contrast showed nothing. Head and neck Dr. Wants to see more then a dental xray before seeing me. In the mean time my symptoms have gotten way worse. Finally went back to oral surgeon last week just to get tmj relief. He did 50 units of botox in both jaws and it has helped with pain and swelling. The pain from the bone still flares up. This will only help temporarily. In the next week back on the Dr. Find. Best of luck to you and I so feel your frustration!

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@Cuddles1959 - I’m so sorry :purple_heart:. This is just a miserable, scary process. And one Ive now dedicated as a huge priority. I think I have my path laid out with appts with the two known specialists in my area and am continuing to work with my pain mgmt doc. I’m also continuing with fascia release PT just to keep things in check (not that it helps but maybe it will prevent things from getting uglier). I hope you get answers soon. Like you, Im no stranger to surgery but this for some reason scares me to pieces if it becomes my path. Uhhg! I just want it over. :cry:

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@tp12 - thank you far sharing. I hope your healing continues on and you can get back to 100% soon! I had a great convo with my PT today and she suggested that if surgery is in my future to do some myofascial release both before and when safe, after surgery. She said it makes a big difference in her patients healing. Perhaps something you may want to consider?

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Hi @Tjmhawk01
A quick observation about the 3d model (things are visible much better now).
Styloids are possibly ramming into the C1 vertebrae when you look down, and it looks you have slight kyphosis in your neck (loss of natural C curve with tendency to go into “reversed” C curve).
Have you ever tried to wear a soft collar for a few hours/day to prevent your neck from over flexing? In my case (I have a straight neck too) it helps.
Also I guess you’d want to chat about it with your doc and get referral to a good neck physiotherapist and maybe an orthopedic specialist.
A while ago I started suspecting that thick and long styloids somehow develop to prevent the head from being over flexed, and might actually be a signal of underlying muscular/ligament problems/imbalances in the neck.
(Not a doctor here)

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@vdm - Interesting observation. I have been told that there’s some mobility issues in my cervical spine but the jury is out as to where….some say C1, while others say C3/C4. I’ve tried doing strengthening exercises but never get past chin tucks because anything more causes things to get ugly painful and flared up. I have not tried a soft collar either.

I’m unclear about how a neck Physio or orthopedic doc could help. Can you clarify your thought process to help me better understand? Are you suggesting that styloids might not be the root cause?

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My alleged line of thought is that styloid anomalies might have developed to prevent the head from bending down (“nodding”) too much at the occipital/C1 level, in case there is something wrong with the occipital muscles (Suboccipital triangle - Wikipedia) and/or any other ligaments/muscles that are supposed to act as “stoppers”.
Straight neck (aka military neck, loss or neck lordosis, neck kyphosis, flat neck Military Neck: Causes, Symptoms, Treatment) might be result of many factors, including reversible ones (poor posture, weak muscles and so on).
What I’ve been also suspecting, that some physios/doctors don’t take into account that the straight neck perhaps indicates imbalance problems with muscles in the neck (some are too long, some are too short, some are too strong, some are too weak), and when they give exercises like “chin-tucks”, they ignore that the strongest muscles will likely take majority of the action in that movement, and just get stronger, while the weak muscles/stuck vertebrae will remain weak/stuck.
In my humble opinion, a good neck/spine physio/kinesitherapist might help to gently and slowly restore the neck curve over the time, which might move the styloids away from the C1. I wish I had a flexible skeleton model to show what I mean, but I guess you can imagine.
By the way, neck collars are cheap these days, so it might be worth trying. Cervical Collar - Physiopedia

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@vdm - that is a really interesting thought and validates a similar train of thought I had with regards to strengthening. I had thought about canceling my next PT appt with my orthopedic group this week but I think I’ll keep it and inquire with my PT on this thought. Perhaps he can recommend a good Orthopedic dr for me to get a referral to - if nothing else, it will count as another opinion and set of eyes. Thank you for sharing your perspective and clarifying for me :purple_heart:

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A small observation from my own experience with physiotherapists over the last 10 years or so… one of the common exercises was to bend the neck sideways as of trying to reach the shoulder without lifting the shoulder up. And nobody had told me that the whole neck should curve sideways (Visible Body | The Scalenes in Lateral Flexion of the Neck - YouTube). So I would overstretch the first few vertebrae joints (I guess C1-C3) without any real long-term result, thinking I was doing the exercise “properly”. Only later I learned that actually the whole neck should curve while doing the exercise. That is not very obvious to a bystander watching the movement, as the neck muscles practically hide how the spine moves when doing the exercise. This and other similar small findings really changed my understanding about the body and how I should do one or another exercise. For example, when doing the chin-tucks, I used to do them exclusively at C0-C1-C2 level thinking that it’s the proper way. Actually that helps (in my case) only to activate some occipital muscles, but nothing else in the neck. Then I changed the routine and started to gently imobilize that top region of the neck with a towel or fingers and let the rest of the neck engage. Now my chin-tucks start at about T2 level and involve all the remaining vertebral joints up to the skull base. Slow, repetitive, time-consuming and sometimes uncomfortable process that took me about 2 months to achieve the result, but I feel my neck much more flexible and mobile than over the last 12 months, while trying to follow previous therapist’s instructions. Does that help with Eagle’s? Not yet (it seems I might have some real IJV compression), but at least my neck feels stronger and gives me quite clear signal when it gets tired, instead of starting to hurt like crazy…

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