Hello! Thank you so much for adding me to this group. I'm here because I'm hunting down ES info for my sister. I'm also pre-med, and this subject is intriguing. I want to know WHY the styloid process undergoes elongation, and I'm not satisfied with the little bit of information available in the medical literature I've been reading.
I hope you'll bear with me, and perhaps take some time to answer a bunch of questions. Perhaps this will become my focus in medical research someday and I'll be able to give back...
One of the mysteries about my sister's presentation that has really grabbed my attention is that her symptoms wax and wane with her menstrual cycle. Do other women notice this, too?
Do any of you have any history of parathyroid disorders? Kidney problems? Osteoporosis/arthritis? Heel spurs/bone spurs? Plantar fasciitis? High or low calcium, phosphate, magnesium, Vit D?
I ask because I am trying to determine connections to any disruptions in calcium metabolism. The body doesn't just randomly stockpile calcium outside of the bone matrix without an underlying reason, and while surgery can reduce the risk of carotid artery compression/dissection and relieve pain, there needs to be some focus on correcting the original imbalance. For instance, a year and a half ago I had a nearly-debilitating heel spur that I was told would need surgery and would never heal on its own. When I asked what caused it I was told that these things just happen in some people. I began researching calcium metabolism then, and changed my diet, started strengthening exercises, and put my cane away within 2 months. When I "fall off the wagon" my heel aches... a bone spur ANYWHERE in the body is a sign of something out of balance.
I would really love to just collect comprehensive data and medical histories for everyone, just to be able to scan for common denominators. Perhaps I'll draft a survey...
Meanwhile, I would greatly appreciate any answers to the above questions, or any other information you'd care to share. :)
Welcome,and thanks for taking an interest in Eagles’s syndrome. Sorry your sister has been diagnosed with this. Hopefully this site will be helpful.
I am in the medical field, and have asked the question why several times. In the discussions on the site, there are several members with autoimmune issues of various kinds. Not sure of the relationship there with some types. I had Grave’s disease that I treated with radioactive iodine. I also fell about the time the doctor was trying to adjust my thyroid meds, and really hit my occipital portion of my head hard on a door jam on a wet floor. The left side is where I hit the hardest, and that side is longer than the right. I am otherwise pretty healthy with only allergies, mild asthma. I did have surgery on my sinuses, but I had felt the styloid process in my tonsilar fossa on the right before that surgery. I was a symptomatic at the time of surgery, so blew it off. This has been one of the most frustrating, and definitely painful things I have ever gone through. Fortunately, when I finally was referred to my ENT, he knew what the problem was, but wasn’t comfortable doing surgery. I am currently looking for someone that can do surgery, but probably will have to travel for it like many other on this site.
Thanks for your interest in us, and best wishes as you peruse your quest to become a physician!
Well, as far as menstrual cycle goes....I am post menopausal, but most other symptoms I have, did follow my cycle as I will explain.
I also have M.S. and my family has a history of autoimmune disorders (Scleroderma, Sojournes, Hashimotos to name a few). My M.S. symptoms would wax and wane with my cycle.
I had a very low D3 at one time that has since been corrected. I have no idea about my calcium levels. However I do supplement since menopause with a combo supplement with Calcium, Magnesium, D3 and K. I've been told these should be taken together for best results and taken with a bit of fat (I take them with toast and butter).
No bone spurs here, but I have within the last year gotten some ganglia on the tendons of the palm of the hand and one inside finger knuckle. I also have buritis in both hips.
I've been told I have cervical stenosis.
I have a thyroid nodule too, but normal thyroid function.
tonsillectomy when I was 4 years old (1962)
I was diagnosed with Eagle Syndrome in December of 2014 and am actively seeking doctors in Chicago for help (I live in Michigan and have found no help here).
Any research in this field would be greatly appreciated and I hope those of us here can help you.
Hi Jeanette
Fascinating reading your post, I’ve been ‘suffering’ with this thing for about 7 years, just on right side. I had external surgery in 2012 to remove right side, long story short, it didn’t help and things have got gradually worse lately, it’s truly driving me bonkers as we speak! Feel like I could cough out a spiky walnut at any moment!
I’ve had back trouble many years ago and there was mention of a bone spur. I’ve been having terrible shoulder pain recently and only last week was sent for xray and ultrasound, et voila, calcified shoulder. … So over the weekend I’ve been trying to find out why this calcification is going on.
I’ve had full set of blood tests which I go for results this week. I’m going to show your message to my GP to see what she says.
I’ve been going through the mill with different ent consultants, sadly I feel that as long as you don’t have cancer then it’s not that important to them?
I wish you luck with your studies and best wishes to your sister, I’ll let you know what the GP says and if they suggest supplements, I read about taking magnesium to help absorb calcium but not sure of implications. Is body holding on to calcium as it’s lacking in diet, or being over absorbed as too much around, perhaps none of the above?!
Sorry, I did not totally answer you specific questions…ca, mg, and phosphate ok. Never had vit d checked, but I took live in MI so assume mine is low and take some with calcium supplement. I did not notice symptoms with menses, but a lot of my increased symptoms have come about since I have gone through menopause. Arthritis only in my cervical neck following a MVA on the mid 80’. My xd came in Aug of 2014 after seeing multiple providers, dental extraction that probably did not need to be done. Sinus surgery April, 2013
Thank you, Kay! How long ago was your thyroid treatment? I would keep a close eye on parathyroids after radioactive iodine tx...my 26yo niece had a thyroidectomy in 2006, and I am alarmed at the moment because her blood pressure is going up and her doc isn't monitoring her PTH frequently...grrrr...
Kay said:
Welcome,and thanks for taking an interest in Eagles's syndrome. Sorry your sister has been diagnosed with this. Hopefully this site will be helpful.
I am in the medical field, and have asked the question why several times. In the discussions on the site, there are several members with autoimmune issues of various kinds. Not sure of the relationship there with some types. I had Grave's disease that I treated with radioactive iodine. I also fell about the time the doctor was trying to adjust my thyroid meds, and really hit my occipital portion of my head hard on a door jam on a wet floor. The left side is where I hit the hardest, and that side is longer than the right. I am otherwise pretty healthy with only allergies, mild asthma. I did have surgery on my sinuses, but I had felt the styloid process in my tonsilar fossa on the right before that surgery. I was a symptomatic at the time of surgery, so blew it off. This has been one of the most frustrating, and definitely painful things I have ever gone through. Fortunately, when I finally was referred to my ENT, he knew what the problem was, but wasn't comfortable doing surgery. I am currently looking for someone that can do surgery, but probably will have to travel for it like many other on this site.
Thanks for your interest in us, and best wishes as you peruse your quest to become a physician!
Thanks for taking the time to get back to me, Ivy! Your scleroderma seems to me like a strong clue...I'm adding it to my "learn more ASAP" list!!!
Ivy said:
Well, as far as menstrual cycle goes....I am post menopausal, but most other symptoms I have, did follow my cycle as I will explain.
I also have M.S. and my family has a history of autoimmune disorders (Scleroderma, Sojournes, Hashimotos to name a few). My M.S. symptoms would wax and wane with my cycle.
I had a very low D3 at one time that has since been corrected. I have no idea about my calcium levels. However I do supplement since menopause with a combo supplement with Calcium, Magnesium, D3 and K. I've been told these should be taken together for best results and taken with a bit of fat (I take them with toast and butter).
No bone spurs here, but I have within the last year gotten some ganglia on the tendons of the palm of the hand and one inside finger knuckle. I also have buritis in both hips.
I've been told I have cervical stenosis.
I have a thyroid nodule too, but normal thyroid function.
tonsillectomy when I was 4 years old (1962)
I was diagnosed with Eagle Syndrome in December of 2014 and am actively seeking doctors in Chicago for help (I live in Michigan and have found no help here).
Any research in this field would be greatly appreciated and I hope those of us here can help you.
Thanks for that, Sue! I would ask to have your parathyroid hormone levels checked (do you have kidney stones, BTW?) The parathyroid is what signals to the osteoclasts in bone to release calcium into the bloodstream for use elsewhere. A calcium deficiency can overstimulate the parathyroid, which can then go into overdrive and prevent the calcium from being stored in the bone...more soon, my sister is at the door. :)
Sue said:
Hi Jeanette Fascinating reading your post,,,,, I've been 'suffering' with this thing for about 7 years, just on right side. I had external surgery in 2012 to remove right side,,,,,, long story short,,,, it didn't help and things have got gradually worse lately, it's truly driving me bonkers as we speak! Feel like I could cough out a spiky walnut at any moment!
I've had back trouble many years ago and there was mention of a bone spur. I've been having terrible shoulder pain recently and only last week was sent for xray and ultrasound, et voila, calcified shoulder. ...... So over the weekend I've been trying to find out why this calcification is going on.
I've had full set of blood tests which I go for results this week. I'm going to show your message to my GP to see what she says.
I've been going through the mill with different ent consultants, sadly I feel that as long as you don't have cancer then it's not that important to them?
I wish you luck with your studies and best wishes to your sister,,, I'll let you know what the GP says and if they suggest supplements, I read about taking magnesium to help absorb calcium but not sure of implications. Is body holding on to calcium as it's lacking in diet, or being over absorbed as too much around,,,, perhaps none of the above?!
Appreciate your professional interest in ES and hope your efforts can find relief for your sister as well as those of us with the diagnosis. Like a former responder, I had tonsillectomy at age 5. I am now 65 and had my first joint replacement (left hip) at the age of 48. Diagnosis was osteoarthritis. Since then I have had the other hip replaced, both shoulders and left knee. I have been diagnosed with BPV (benign positional vertigo). Literature on ES suggests vertigo is a symptom. Have also suffered from migraine headaches since age 7. Only in the past couple years have the incidences and degree of severity decreased. My ES symptoms are strange… I have an excruciating stabbing pain on the left side of my head by the inner ear every time I introduce something into my mouth. It could be water, toothpaste or food. The severe pain lasts for about 10 seconds, then it goes away and I can resume my activity, drinking, eating or brushing my teeth without any further discomfort… Until the next oral activity begins, which could be in about 15 mins or 2 hours. The pain is localized to just the left side, jaw/inner ear area. ES diagnosis was from ENT in October 2014. Hope my history has added to your research.
JJ: I was incorrectly with Hashimoto’s I believe in early 2009. It was correctly dx with Graves in 2010, and my RAI was in December of 2010. Thanks for tip regarding PTH…I wondered about that…thanks for your concern!
I know that I am deficient in both magnesium and vitamin D but only recently began to consider the link to ES…I would be happy to complete a survey should you post one.
I hope you are able to help your sister find some relief!
I recently had a thyroidectomy (cancerous but it was encapsulated), had a kidney stone maybe two yrs. ago, few sinus surgeries, severe tmj problems (working on it). Thanks for writing in.
Thank you for your interest in ES and your sister's condition. I have been diagnosed with ES and have underwent surgery a couple of months ago. While the surgery did relieve some pain from my neck to my ear, it seems that the pain in my lower neck and back as intensified. I have been doing a lot of research to try to determine what is going on . . . as the doctor says not too worry, I just have bone spurs and stenosis of the spine--normal arthritis stuff. I am 46 and very active, eat a mostly vegetarian diet. Some of the activities I do are trail running, mountain biking, yoga, kayaking, etc. I also do frequent massages and chiropractor adjustments. By all accounts, I should not be having the pain that I am. My research leads me to believe that I must be having issues with calcium and/or magnesium absorption--even though my tests a couple of years ago were fine. I have done a complete study of the vitamins, minerals, protein, carbs and fats that my diet provides . . . according to the USDA I should be really healthy. Of interest in your research, I also have hypothyroidism, raynauds, gall bladder removed several years ago, and what I believe is ongoing IBS. I take supplements for IBS (colon health), and even though the ENT says I don't have acid reflux, have been taking Prilosec, Prevacid and Omneoproxyl for years because without it I can't function due to extreme stomach discomfort. I am not menstruating, since I had an ablasion a few years ago. Probably the only "at risk" thing I take or do is live in a cold environment (which seems to aggravate my pain), sit at a computer all day at work and chew Nicorette to keep from smoking. Recently I was in Central America for a month and the pain that was excrutiating when I flew down there left completely after 3 days. It returned after a few days back to the cold office. I am really worried at the level of pain that I'm feeling and concerned that the only thing my doctor seems to think is reasonable at this point is to send me to pain management. Granted, I want pain relief, but if there is an underlying issue that I should be correcting . . . masking the pain means I'll never get to the source of it.
Thanks for replying, Charmion...how long ago did you begin to have symptoms of ES? Before or after you started using Prilosec/Prevacid?? You are the second person so far to mention antacid use, and I'd be curious to know about others. Antacids cause calcium depletion.
Definitely going to put together a survey tonight. Just from a dozen replies, I'm seeing parallels...lots of thyroid issues, in particular. I'm going into Nancy Drew mode! :)
Charmion Harris said:
JJ,
Thank you for your interest in ES and your sister's condition. I have been diagnosed with ES and have underwent surgery a couple of months ago. While the surgery did relieve some pain from my neck to my ear, it seems that the pain in my lower neck and back as intensified. I have been doing a lot of research to try to determine what is going on . . . as the doctor says not too worry, I just have bone spurs and stenosis of the spine--normal arthritis stuff. I am 46 and very active, eat a mostly vegetarian diet. Some of the activities I do are trail running, mountain biking, yoga, kayaking, etc. I also do frequent massages and chiropractor adjustments. By all accounts, I should not be having the pain that I am. My research leads me to believe that I must be having issues with calcium and/or magnesium absorption--even though my tests a couple of years ago were fine. I have done a complete study of the vitamins, minerals, protein, carbs and fats that my diet provides . . . according to the USDA I should be really healthy. Of interest in your research, I also have hypothyroidism, raynauds, gall bladder removed several years ago, and what I believe is ongoing IBS. I take supplements for IBS (colon health), and even though the ENT says I don't have acid reflux, have been taking Prilosec, Prevacid and Omneoproxyl for years because without it I can't function due to extreme stomach discomfort. I am not menstruating, since I had an ablasion a few years ago. Probably the only "at risk" thing I take or do is live in a cold environment (which seems to aggravate my pain), sit at a computer all day at work and chew Nicorette to keep from smoking. Recently I was in Central America for a month and the pain that was excrutiating when I flew down there left completely after 3 days. It returned after a few days back to the cold office. I am really worried at the level of pain that I'm feeling and concerned that the only thing my doctor seems to think is reasonable at this point is to send me to pain management. Granted, I want pain relief, but if there is an underlying issue that I should be correcting . . . masking the pain means I'll never get to the source of it.
Thank you, Winterinmn...seeing lots of thyroid issues. I'm eager now to post a thorough questionnaire! I've got to figure out how to link one onto the forum...any IT geeks here to help a computer illiterate nerd out? lol :)
Winterinmn said:
I recently had a thyroidectomy (cancerous but it was encapsulated), had a kidney stone maybe two yrs. ago, few sinus surgeries, severe tmj problems (working on it). Thanks for writing in.
I started with ES symptoms 3 years ago, with what felt like a strained sternocleidomastoid muscle and ear pain. It progressed last year to feeling like a rubber band pulling from my ear to my throat and steel wool stuck in between it all. My gall bladder issues were 10 years ago–I’ve been on acid blockers ever since. I did have my gall bladder removed . . But apparently it looked healthy. I was diagnosed with raynauds a couple years after that. Hypothyroidism was 2 years ago, though I’m quite sure that has been an issue for many years.
Hi! It's great that you're helping your sister and looking into this. As well as the already researched link to tonsillectomies, and the thyroid/ calcium link others have mentioned, there was a discussion previously about 'Diffuse idiopathic skeletal hyperostosis (DISH)', which is calcification or a bony hardening of ligaments in areas where they attach to your spine. As several people have bone spurs like you mentioned, on here it was discussed as a possible cause for elongation/ calcification. There has also been a recent discussion about this being hereditary. Also in previous discussions we've talked about an injury- head or neck- perhaps being to blame with then maybe the body's repair of that going overboard and causing calcification. I had quite a bad whiplash injury 20 years ago and have had neck trouble since then, others have had the same....
Good luck with your research, and hope that your sister gets treated well.
My wife [Cindy Lou] & I are very excited by your interest in getting to the bottom of 'Why ES?' My wife has been struggling with ES symptoms for 5 years+/-, & also struggling with the medical system's response to her plight. For the most part, little interest has been demonstrated, by many of the practitioners she has seen, to grapple with the unknowns of her condition. On occasion, writing her symptoms off as "psychological" was a fall-back...hear that often enough, added to the persistent & agonizing pain, & one tends to develop "psychological" symptoms - depression, hopelessness,.... This experience seems similar to that described by many others in this community.
We do hope you are able to post a survey - my wife is very keen to respond.
Meanwhile, best wishes in your efforts to help your sister with ES
Hello, David! Sorry I haven't responded sooner. I have been busy drafting a survey and trying to figure out the best way to get it out there. I might set it up via a dedicated Facebook page, not sure yet. I'm also studying for exams, so I'm trying to make sure I don't get so enthusiastic about this project that I flunk out of school, LOL!!!
The most discouraging common denominator I'm seeing here is the lack of appropriate care from the medical professionals...I can't grasp how any doctor could just brush this off and not be so intrigued that they would TRY to learn more about it. I know a few docs who are so disgusted by the current standard in medical practice (like being so overloaded that they can only spend an average of ten minutes per patient) that they have left the mainstream to set up small private practices wherein they can be the doctors they dreamed of being...I personally am going the naturopathic route, because I refuse to become a slave to Big Pharma, and want to HEAL people, not suppress their outward symptoms.
I have spent hours digging through this discussion board, and my heart hurts for all of you! I even spend every night DREAMING about this, and wake up thinking I've found the answer, only to realize it was a dream. :( SOMEDAY!!!
David said:
Hi Jeannette
My wife [Cindy Lou] & I are very excited by your interest in getting to the bottom of 'Why ES?' My wife has been struggling with ES symptoms for 5 years+/-, & also struggling with the medical system's response to her plight. For the most part, little interest has been demonstrated, by many of the practitioners she has seen, to grapple with the unknowns of her condition. On occasion, writing her symptoms off as "psychological" was a fall-back...hear that often enough, added to the persistent & agonizing pain, & one tends to develop "psychological" symptoms - depression, hopelessness,.... This experience seems similar to that described by many others in this community.
We do hope you are able to post a survey - my wife is very keen to respond.
Meanwhile, best wishes in your efforts to help your sister with ES
Hello, Shayna, sorry I overlooked your reply! Wow, you've really been through the mill. :( How are your kidneys? Any nutrient deficiencies, or has your physician even looked for any? I hope there's something I can do sometime soon to make a difference for everyone here who has to live through so much pain...makes me so much more determined to finish my schooling ASAP!!!
Shayna said:
Appreciate your professional interest in ES and hope your efforts can find relief for your sister as well as those of us with the diagnosis. Like a former responder, I had tonsillectomy at age 5. I am now 65 and had my first joint replacement (left hip) at the age of 48. Diagnosis was osteoarthritis. Since then I have had the other hip replaced, both shoulders and left knee. I have been diagnosed with BPV (benign positional vertigo). Literature on ES suggests vertigo is a symptom. Have also suffered from migraine headaches since age 7. Only in the past couple years have the incidences and degree of severity decreased. My ES symptoms are strange... I have an excruciating stabbing pain on the left side of my head by the inner ear every time I introduce something into my mouth. It could be water, toothpaste or food. The severe pain lasts for about 10 seconds, then it goes away and I can resume my activity, drinking, eating or brushing my teeth without any further discomfort..... Until the next oral activity begins, which could be in about 15 mins or 2 hours. The pain is localized to just the left side, jaw/inner ear area. ES diagnosis was from ENT in October 2014. Hope my history has added to your research.