Hello Everyone. @jules, @isaiah_40_31, @vdm, @kooldude and everyone , Will you “Please Forgive Me” for suddenly leaving after your valued attention, care and time to read and review several scan pics, sharing your thoughts and opinions on my styloids and other areas, clearly marking areas in question, suggesting what and how to ask drs. I can’t Thank You enough! When it sunk in that my styloids may not be the problem, that dang uneasy feeling, the one when you walk in drs office feeling upbeat positive then walk out with tail tucked head down low, like a nut trying to show drs your scan pics and they look at you with that “me dr you dummy” look. I was embarrassed to be on this forum because my styloids weren’t like the usual Eagles Syndrome. I wanted so badly to had finally got the answer…Whew…It’s just so hard sometimes … …
I asked everything you suggested, I’ll explain further down in this post. Since my last post in February 2022, Ive consistently read and learned from this incredibly informative, inspiring, interesting and helpful forum. It never ceases to amaze me the struggles people go through while relentlessly working to find answers and help. Technology is available to fly man to the moon, see lights and explosions of new planets and galaxies light years away and detect small objects in the deepest depths of the seas but can’t figure out what’s causing pain my mouth. Go figure.
I understand you’re not drs or radiologists but your hard earned knowledge is of abundance! Through reading and studying medical and radiology articles and videos etc for personal reference and experiences, you know a great deal about muscles tendons bones veins and much more from brain to neck and then some. Ive learned from this forum also; symptoms, treatments, viewing shared scans, reading suggested articles like @vdm ‘s Favorite Lists of Research/Educational Resources, how to prepare and ask Dr questions, seeking an advocate, etc….short is “Thank you all for sharing!!”you have helped so many! Which leads me to ask will you please accept me back? I’m still struggling… …I need help with understanding my anatomy, why I’m seeing things, what it could be or why I’m not seeing things, my anatomy looks different somehow.
I’m not sure if my bio/story is still available so for now I will try to be brief in summing up 20 years. My pain started in August of 2003 with a metallic taste in my mouth and felt swollen in the oral cavity it then escalated to throbbing, burning, stabbing tongue, teeth, jaw, face and neck pain with majority of pain being right sided. Right front side of neck would turn a red in between the thyroid gland and the sternocleidomastoid muscle and inch size inflamed red on my 1st right rib below collar bone next to middle, that’s still swollen not red, drs said it was costochondritis. Months prior to symptoms began I had a partial hysterectomy for fibroid tumors months. Have seen several chiropractors, dentists( had teeth pulled, root canals etc. TMJ appliances and injections etc. ) and ENT’s galore and more. (Symptoms exactly as a styloid surgeon told @warrick in a recent post about eagles syndrome “he categorizes very strictly as some with a stabbing pain under the tongue and in the tonsil area, made worse by swallowing, and a stabbing pain in the back of the jaw up into the ear”; except my pain is also in the tongue and neck. Pain so intense it feels like an ice pick stabbing in my throat at hyoid/carotid area, and like if I opened my mouth fire would blow out. Throughout the years I’ve struggled trying to find the answer, feel like Ive seen every dr in NC. I have a cyst that’s enlarging on right thyroid gland, then years later another on left, that’s being watched and biopsied, thyroid described as multinodular goiter, taken thyroid medication and all sorts of pain meds from opioids anti inflammatory nerve pain muscle relaxers anxiety and periodically used antibiotics for an odor drainage stomach curling infection of sorts coming from somewhere in my mouth. (One particular year 2012 I had fevers of 102, extreme vertigo, nauseous, body aches, smelling odor thought from inside nose which I had sinus surgery for deviated septum and turbinent reduction. Right after surgery my symptoms escalated with strange loss of control in my arms or legs, unsteady gait, feeling of pressure on my brain, several ER trips which they checked my stomach not my head and neck, resulting no answer. I could hear liquid moving from one side to other with movement like rolling over in bed, thought it was behind my nose somewhere, when 2-3 weeks later I heard and felt a pop and poof I felt better, tell drs this and I get that hmmm me-dr-u-dum-e look. Every scan Ive had resulted normal except cysts in thyroid and scattered bilateral thyroid nodules and small nodes right infraparotid 5mm on margin of parotid, and 6mm right jugular/digastric and scattered cervical lymph nodes and mild pharyngeal stage dysphagia with mucus accumulation on right (which I think were clues). Had another sinus surgery and 3 tonsillectomy’s in hopes of resolution. In 2020 had biopsy/removal of a yellow roundish lesion on right mid side tongue that resulted “Reactive squamous mucosa and submucosa with focal benign neuroma, consistent with traumatic neuroma” rad said most likely from biting my tongue, I wasn’t and don’t. Diagnosed with hypoglossal neuralgia, facial neuralgia, tonsillitis, burning mouth syndrome, geographical tongue, Sjrogrens syndrome, tmj, Eustachian tubes disfunction, allergies, stress anything and everything but the cause. Years prior to 2003, I suffered with chronic sore throat, laryngitis, sinusitis or upper respiratory infections throughout my life. Least is, this has been the most frustrating, heart breaking, totally baffling, painful thing that’s taken up 1/4 of my life. . In 2021 an ENT said I had Hyoid Syndrome, suggested injections in my hyoid. I was afraid to have the injections because I felt something else was wrong in my tongue and thyroid. This ENT referred me to Dr. Hackman per my request for him look at my styloids which leads to where I left off in this forum.
My last post was right before an appointment with Dr. Hackman in April of 22. I agreed with your thoughts on my styloids not likely being the problem but after 18+ years, (now 20+) I was grasping hoping for answers and resolution. We talked about my styloids not looking like others with Eagles but he thought they were oddly shaped (thickness and L curvature) and could be the cause of the years and years of “ice pick in throat pain” and referred pain. He showed compassion when he asked again how many years Ive suffered, nearly 19 at that time. He felt inside my mouth, said my tonsils were huge on both sides and felt what could be a big tonsil stone on right side of throat. I told him I had a tonsillectomy in 2008ish for this same pain, he said the tonsillectomy was the right idea but the job wasn’t completed, I had remnants of tonsils he wanted to remove along with bilateral styloids. He didn’t think the ptyergoid process was an issue nor the thyroid cartilage or gland, he did biopsy the cysts in my thyroid during the tonsillectomy. I was scheduled for bilateral styloidectomy and tonsillectomy in June 2022. Two weeks before surgery I was having incredible pain in my tongue. I used a endoscopy type camera to look at my tongue sticking my tongue out as far as I could when I found something white like a small cyst at the base of my tongue base behind epiglottis. I sent to Dr Hackman he saw me to scope, he saw it also. He said that it could be a stone from my tonsils and suggested for the time being only have tonsillectomy and address styloids if pain continues afterwards. I agreed. I had the tonsillectomy in June of 2022. The pain continued afterwards. In September 2022 he did another tonsillectomy this time robotic for lingual tonsils and more remnants on side of throat. It was truly the most painful experience feeling felt like someone had nailed my tongue to the floor that subsided in weeks prior. I continued to suffer with tongue pain especially on the right side of my tongue radiated into jaw with pressure in my neck around the thyroid area, that feels like someone tightening a shoe string around my neck, choking sensation that stung. During all this time I was have pain and pressure in my top right back tooth and jaw with palate, tongue and adjacent teeth on upper right burning pain. In dental scans I could see a root from that tooth going to my sinuses which I thought could have been contributing to sinus infections. In September 2023, After a series of steroid injections and finally convincing oral surgeon I got that tooth pulled. I diligently rinsed my mouth with warm salt water for healing which oddly felt better after starting a low iodine diet. I’d been using iodized salt to rinse until the diet switch. The other pains etc was still going strong. I had been seeing an endocrinologist for my thyroid gland. Early 2023 they increased my thyroid medication to help with the pressure/choking sensations and extreme fatigue (another symptom) Biopsies of the cysts in thyroid resulted follicular, colloid or normal tissue. Coincidentally my tonsil biopsy came back as follicular hyperplasia and lymphatic hyperplasia. I thought it was odd follicular hyperplasia was in my thyroid and throat. Continued having issues with my thyroid so after asking the endocrinologist for a thyroid uptake scan which she didn’t know what it was, I saw another endocrinologist I’d seen in years prior whom has said he thought I had a thyroglossal duct cyst the size of a pea on the right side of tongue but didn’t know for sure. He ordered the scan. In meantime, he did an ultrasound of my thyroid and the base of my tongue. He saw growths on both sides of tongue base, larger on left than right said it could be ectopic thyroid tissue. The thyroid scan consists of going on a low iodine diet. November 19th 2023 I started the diet. You wouldn’t believe the foods that have iodine. I had to be on the diet for 3 weeks and off thyroid medication before the scan. During this time at oral surgeon follow up appt, I told him that somehow the low iodine diet has made a difference in how I felt. My flu like body aches (another symptom) I felt for years was better. I couldn’t believe it.
Had thyroid uptake scan mid December 2023 that resulted normal which I question, I’ll explain below. The endocrinologist said I should see an ENT about the growths on my tongue but wouldn’t send anyone notes, thoughts or copies of the tongue part of ultrasound, nor give me a copy. He said his ultrasound machine wasn’t good enough to give any diagnosis or recommendations for the tongue though I saw what he saw in the ultrasound, it was pretty clear. I had a dental ct scan in May 2023, stating “Left base of the tongue is mildly enlarged relative to the right side This is most likely due to the lingual tonsil removal”. Both ultrasound and dental ct shows something enlarged on left. I told the endocrinologist that my body felt better on the low iodine diet, he said to stay off the Synthroid thyroid medication and stay on diet for 3 months then check levels. I had stopped the thyroid medication for nearly a year few years ago it didn’t make a difference like the low iodine is doing. I’ve always been a good for ya eater, did several different diets not to lose weight but to make me feel better, none reacted like the low iodine. Amazing. I’m still on the diet still better as far as body aches. One thing I noticed on the diet was the color of my tongue, it always had a white coating that cleared after starting the diet. I used to wonder why certain foods made things hurt worse now thinking it was Iodine. The tongue burning pain became much better with occasional horrific ice pick pain, though it’s slowly getting worse, tongue and throat feeling swollen and my throat is chronically sore all around to back wall, along with the pressure in my throat /neck a choking stinging sensation. Also something stuck in my throat sensation on right side. I can almost pinpoint where the burning and stuck sensations start in my tongue. I’ll send pic. I am adding little more iodine in my diet to prevent deficiency. Outwardly you can see swelling under my chin and redness in my neck, like a horizontal ligament on left coming from thyroid area, and a bright red spot at top of thyroid that stings when I apply ice. My tongue is oddly shaped, you can see the swelling type difference on the right and a lump on the left. Ive had lumps bumps red areas on the tongue and on the bottom right of my tongue at sublingual gland that stays red and swollen and also looks like an xtra layer or tract growing into right side from tongue base to tip with little yellow round lumps and veiny, lumps are like the larger one that was biopsied as neuroma in 2020. Recent 2022 dental scans didn’t state anything but to me shows something like cysts or calcification in the hyoid, epiglottis, tongue area on the right that’s growing upwards in a line, it doesn’t look like the stylohyoid ligament area. It’s where I feel something stuck sensation.
The thyroid uptake scan resulted normal. But it also mentions right thyroid gland has a cold nodule nothing else. After reading about uptake scans, I see a smaller cold nodule on the left. A side view of the right thyroid appears to have 2 lobes, all the side views of the left shows an upward and downward shadow which to the best of my knowledge could be a pyramidal thyroid gland. In CT scans I see a something growing from right back bottom thyroid that could be the double lobe appearance in thyroid scan or maybe it’s the extra vein? In CT’s I see what could be pyramidal lobe on left, a growth on inside middle, and a nodule under the left thyroid that could be a parathyroid adenoma. My thyroid appears to not have an isthmus or closure where normal isthmus should be and the veins are different from others, having more veins. The size of the isthmus in prior reports say isthmus is 0.1 cm in width which is very thin (not 1cm). When looking at ultrasounds the place measured for isthmus looks like it could be a trachea ring and if you keep scrolling it doesn’t connect. The first ultrasound I had says isthmus is unremarkable wasn’t measured. The superior thyroid artery and veins appear to be different from others, run up and down along sides of thyroid and trachea but not connecting in middle and looks like I have 2 middle veins? Superior vein and middle vein on right have an unusual pattern that appears to connect on right side of throat at hyoid bone, an area I have a lot of pain and it looks like they attach together at a crossroad at hyoid(?) The right middle vein has changed in appearance since 2008, was clear or little there now it’s thicker and highlighted. I have 2 veins that’s going up to tip of chin, one each side that looks different from others? And possible swollen lymph nodes at chin especially on left? My thyroid doesn’t appear to connect on my ct scans or MRI’s like the trachea has an open space from my throat to below the thyroid as nothing may be covering the trachea. (Could this openness be the cause of the feeling like I can’t breathe sensation, another symptom) Looks like I have a thin connection at the top back sides of the thyroid like at parathyroid and near tongue base? (FYI my mother had a retrosternal goiter that had grown down into chest so far surgeon couldn’t get it all without cutting her chest, something she couldn’t do because she was unwell, she was all of 90 pounds soak in wet and a goiter had not been seen in her neck until too late and her thyroid levels were always normal until goiter was found after she complained and complained till finally someone listened, sadly she is deceased but I would love to have a copy of her scan, she went with me to a lot my drs visits as my advocate, sure do miss her).
As mentioned, since on the iodine diet, my tongue mouth pain is better, like the burning pain isn’t as intense, although it’s getting worse as time goes on. The swelling pressure stabbing pain is still there. Looking at my tongue and throat in scans I see lesions/ cysts/ growths of sorts and an empty area all of which looks the oral view of lumps bumps tracts described. Since there’s something growing again, I don’t think these are just tonsils but possibly a thyroglossal duct cyst or something similar. Ive searched for a duct leading to the tongue because of symptoms coming from the thyroid upwards but it’s difficult to figure out.
I’ll send pics of what I’m talking about and also use the dicom library to download scans.
I’m going to ask my GP to order a new head neck scan but I would like for it to determine veins from ligaments, like a CTA or CTV, I have never had either. What type scan should I get that would show these differences? I also have a huge right jugular vein, is this normal?
PLEASE help me with this, to the best to your knowledge, to understand what I’m seeing in my anatomy. What Ive described isn’t directly related to eagles but I’m hoping with my symptoms similar to hyoid, earnest and eagles syndrome, this will help others, if only I could help one person. (BTW, I’m very interested and concerned about everyone in this forum but there’s one who stands out with me, @Kerri. Her son had issues with his tongue and foods. He had surgery the end of December 2023 and she hasn’t posted since Christmas. I have been anxiously waiting for her to post again, praying his surgery went well, has anyone heard from her?) You may not have a great deal of knowledge regarding the thyroid but because of your knowledge on veins and arteries, ligaments, keen eyes and interests in anatomy and volume rendering I’m hoping you will help me cipher this out because this pea brain is fried trying to do alone. I also need help from an advocate to assist with communicating with drs. I read positive posts on this forum about BCBS Advocates, who is my insurer, as soon as I can get a clearer understanding of what I’m seeing, I’m reaching out to them because I can’t do this by myself anymore.
Respectfully
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2024030914171815.595631348959575502046
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20240310171418812.69575460810839714499
here’s more
more
