It might be a far reaching question, but is there anybody here who has no lower back/SI joint pain with full mobility, and symptomatic elongated styloids, and perhaps military neck (aka loss of cervical lordosis/straight neck)?
I think I might have found something, but need more “data”.
I’ve only had the occasional lower back issue, & that’s just been muscular, mobility as good as I’ll get at my age! I don’t have military neck as far as I’m aware! Obvs not got my styloids now though
Hp[e that you get somewhere with your theory.
Thanks @Jules! One datapoint in my theory
I have low back pain! Way low, like sacral. Had it for a couple of years now. Also symptomatic Eagle, surgery scheduled for next week.
I don’t really have lower back pain, only if I stand for long periods of time. I have vascular ES. Don’t think I have military neck.
I do not have a diagnosis of ES, but I have been diagnosed with a straight neck, “military neck” Andy do suffer from lower back pain with leg issues as well. I also have what is called a Dowager’s hump. I am almost one year parathyroid adenoma postop. My styloids measure within normal range, but I have so many symptoms, and no one to help!!
I’m glad you posted & you’re recovered from the parathyroid adenoma surgery. That must have been a shocking diagnosis!
Have you had more than one opinion regarding the length of your styloids? Different doctors often come up w/ measurements that don’t match what other doctors find, & that includes radiologists. Where one may say they’re normal, another may say they’re elongated. It may be that yours are borderline, but remember, styloids, if they’re extra thick, curved, pointed or twisted, can cause ES symptoms even when not elongated. Many doctors don’t pay attention to the other physical features of the styloids & only look at length. This is a mistake. Also, a small person can have symtpoms w/ more normal length styloids because the space in the neck is smaller so average styloids may actually be elongated for a small person.
Dowager’s humps are often the result of osteoporosis, but if you’re in the earlier stages of hump development, even that can be corrected to some degree, just as a military neck can be. Working w/ a PT on postural correction is the best route. Have you seen anyone for that problem?
Thank you! I have been busy overseeing the building of our new house and just trying to cope with everything that involves during a pandemic. I know the parathyroid surgery has helped with my hypercalcemia and all that extreme blood calcium affects. As I’ve noticed most who have an ES diagnosis and those of us with so many of the symptoms, I have been trying to work through this process.
I have had two opinions, but I’m not giving up there. One opinion was from a radiologist and one from a physician in Cleveland, an otolaryngologist at CC. Both gave me the same measure of 2.5. The one physical exam that I had, the styloid couldn’t be felt and the images, he said were not of the best quality. I posted those when I originally joined this wonderful group!! It was a panoramic dental X-ray. Mine look very pointy, and one even angled/maybe hooked as well.
I do have some “pre-indicators” for ES, as I have had a partial thyroidectomy 23 years ago and the parathyroid gland surgery in August ‘21. I do suffer from osteopenia.
In hopes to get some answers, I went to Cleveland Clinic. I’ve seen a neurologist, gastroenterologist, pulmonologist, endocrinologist and an otolaryngologist (he’s the only one I discussed a possibility of ES with). I also saw an ENT 4 years ago for ringing in my ears, and again last year about feeling as if something being stuck in my throat. He did a laryngoscop…found nothing. He’s the one that ordered a sestamibi scan based on my blood test results I shared with him. That’s when we found the parathyroid adenoma. I hadn’t done much research about ES at that point. I feel like I’m being treated as if I have fibromyalgia, although I have never been given that specific diagnosis. I’m just so discouraged because I don’t really know where to go from here.
My Dowager’s hump is minimal. I have been going to PT for some time now, once medical practices reopened from COVID shutdown. We also do exercises and stretches for my military neck. My pain is predominately one sided (right side). My apologies for the long winded response.
So sorry that you’ve been through all that, no wonder the ES has had to take a back seat, but glad you’re not giving up! Have you had a CT? you mention just the panoramic X-ray- if you’ve not had an up to date one that might be worth trying, especially if your x-ray images are not so good, & maybe a little while ago? The feeling of a lump in the throat is a classic ES symptom…If you do have or get a CT, some of the doctors do phone consults so maybe you could send the images to someone else? Thinking of you
No worries about making a long post. We’re here for the long ones, medium & short ones!
Jules made good points. You will need a CT scan of the area between your hyoid bone & skull base on both sides of your neck to get an official ES diagnosis. The doctor closes to you who does video consults is Dr. Cognetti in Philadelphia. He’s done many ES surgeries & has helped a lot of our members.
•Dr Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html . Dr. Lamarre & Dr. Burkey, & Dr. Lorenz are all doctors on our lists who work at Cleveland Clinic though they may not all be at the same campus.
It’s great to know you’re going to PT. I hope that makes a BIG difference for you over time. One sided pain from ES is also somewhat common.
Your house project sounds fun but also challenging & stressful. I’m glad you have a diversion for the moment but hope it finishes up soon so you can revisit the ES situation.
Thank you Jules! You all are so very supportive and informative in all your posts and responses! I have had a CT of my neck. The radiologist measured them as 2.5. Then with my visit at Cleveland Clinic, one of the specialists I saw was Dr.Lammare, he measured my styloids from the same CT, with me in the room - 2.5 also. During the physical oral exam in his office, the doctor that did it, said she didn’t feel anything. What I’m noticing even more now is a pain/pressure in the top back of my pallet on the afflicted side. I have so many more symptoms too. The neurologist that I saw while at CC. is treating me for musculoskeletal tension based on all that I have going on in my life. The Neurontin IMO is somewhat masking symptoms (but not) because I still have pain, it’s just on a less grander scale. Once I feel that I have the building a home stressor behind me, I’m pursuing better answers. I’ve played this particular trust level out about as thin as I can. I have to listen to my body and be more persistent because I know what’s not working. As Isaiah mentions the scans, I’m thinking I haven’t gotten the right scans. I also feel like I need to try consulting Dr. Cognetti. I sure appreciate both of you for all your help. Hope to be back here with a more secured diagnosis of some kind. I am so tired of the constant daily pain. It rules how my days go, and that’s not been who I am my entire life. Normally I have been able to preserve through pain…not this level and widespread! Thank you both!!
I hope you know just how wonderful you are!! Your caring support and knowledge has been a strong blessing for me. I am having so many symptoms that have me concerned if it could be something else. This leg, all the way to my feet pain is concerning also. I just hadn’t seen much asked or answered about pain associated with this. So through searching here and found vdm’s post, I had to add that I too have those issues. Thank all of you again! SO-OO very helpful and thought provoking. Helps me more than you all know!!
@annie4 - Food for thought - we’ve recently had a few people w/ crooked &/or elongated hyoid bones on here, that is an angle that might be worth looking at as well depending on your symptoms. Hyoid Bone Syndrome can have symptoms that are very similar to ES. Put this in the back of your mind to save until your house is done.