It seems there might be a lot going on with the structures in your neck. I’d suggest you to find an independent experienced radiologist and go through those potential findings with him/her trying to figure out the possible source(s) of the symptoms. I am obviously willing to share anything I find while investigating my own health issues, but that’s all I can do - I am not experienced in internal medicine or similar areas, and my knowledge beyond certain narrow field is very limited if not possibly misleading.
Also, one of the websites used by freelancer professionals (including radiologists) to get work is Fiverr:
You might want to look for some specialist there to properly discuss the whole big picture too.
As for enlarged IJV, I’d suggest you to look into the TOS - thoracic outlet syndrome, or other possible compressions of the veins going “down” to the heart.
One more observation is that it seems your thyroid cartilage has some growths/calcifications, maybe they are the structures irritating some nerves causing the pain?
@MandS! Of course you’re welcome back on our forum! I’m glad you came back & unloaded.
WOW! WOW! WOW! - you’ve done a lot of research & been through so much over the last many years with your symptoms, diagnoses, & surgeries, plus having continuous symptoms. I am also not great at being able to interpret the images you posted. I did a cursory look at the dicomlibrary images but am just learning how to read those so didn’t dig deep. The main thing I noticed is that you have a kyphotic curve to your neck instead of the normal lordotic curve i.e. your curve is the opposite of what it should be. I don’t know if that could be causing any of the symptoms you have but it certainly could be a contributor.
You noted early on you had a metallic taste in your mouth which (w/o looking back at your previous posts to see if this was suggested) can be a symptom of a CSF leak. There are several reasons those can occur but intracranial hypertension caused by jugular vein compression in the neck is one.
I’m also curious if you got more than one opinion about the hyoid bone syndrome diagnosis as that can cause the same types of symptoms that ES does. Might be worthwhile looking into that again.
The growths under your tongue & at the base of your tongue are interesting, & I’m a little surprised no doctor has pursued those as a possible cause for some of your tongue pain, but I think sometimes things that look scary to us don’t seem so bad to them because of the variety of things they see in their patients. That doesn’t mean it’s right to dismiss them though as something that’s not a problem for one patient could be causing huge problems for another.
I also have a nodular thyroid w/ a couple of calcified nodules that I get checked every 6 mos . I’ve had them biopsied several times, but thankfully the results always show them to be benign. This seems to be a hereditary problem in my family as all my siblings & one of my children has this same problem.
I wish I could be more help for you, but @vdm has give you some good suggestions. Please let us know if/when you get some answers. I’ll also be praying you’ll find the right doctor(s) to help you so you can begin a solid recovery from all the pain & other symptoms you’re dealing with.
Thank you so much!! I clicked the freelance service website searched for radiologist and yes there are some available that are willing to talk one on one! Something I’ve wanted for a long time.
I’ve read about the TOS in several blogs in this forum but didn’t soak it in so I’m going to re-read to get a better understanding. Throughout my life I’ve always had low blood pressure or around 90 as the top number now it’s around 120-140. Drs say it’s white coat syndrome if only they’d realize how many Ive seen, Im not nervous anymore plus Im checking at home. I check it when feel this can’t breathe, weak, heart racing sensation. Recently when bringing in groceries I stopped to wash my hands and for a second I felt this strange scary feeling that I was about to black out. I stood still and it went away. I’m going to ask my GP for a scan of my veins but not sure which I should get CTA or CTV. I’d like one that will help with the other issues as well. Although I sure do hate to get yet another scan. I feel like I’m glowing in the dark now. Haha but not. I’ve thought the same about the calcifications so I greatly appreciate your thoughts regarding same.
Later on today or tomorrow I’m going to post a couple of radiology pics, not rendering, of where the thyroid gland’s isthmus should connect and how mine appears to have an opening. A lot of information is online about this mostly with cadaver pics, don’t want to be one of those cadaver glamour shots posted. That’s one reason I posted so many dicoms to compare and be sure. I’ve got another ct from 2006 that’s good for comparison of then and now. I’d welcome any your thoughts. Again thank you for taking the time to read and view my lengthy and maybe TMI posts. I’ve learned a lot through your “favorite things”.
Thank you @Isaiah_40_31 ! I’m going to use the information you’ve given me, at an appointment with GP this morning. Gotta leave in a few minutes so I’ll comment more about all the good information you’ve given me later today. Again thank you for your opinions and attention.
Quite a few members have used Kjetil Larsen to review scans; here’s a link: Home - MSK Neurology
If you don’t get anywhere with the suggestion from @vdm …
I have noticed the curve in my neck also. Only thing that’s been said from drs is I have osteoarthritis in my neck which was first diagnosed in my 30’s. First MRI in 2004 mentioned something about the C1 or 2? Please don’t quote me on that gotta dig for the results. Since then nothing else has been said. I’m going to read up on this and look for my results. Thanks!!
I have asked about a possible CFS leak several times answered with “no signs of leak”. I still wonder…Thanks!
Hyoid Bone Syndrome diagnosis- Ive been diagnosed once in 2021. I’ve only seen Dr Hackman since that diagnosis. I can’t recall his comments on my hyoid but I agree I should get another opinion for that in particular. Thx!
I agree totally!!! It’s my understanding the tonsils don’t grow back. Whatever this is keeps coming and looks bigger on left than ever before. I don’t understand why these things shown on scans that’s an obvious difference on right than left, aren’t mentioned in results since this is where I’ve been complaining for so long! And to look a mess like it did. Geewiz. No wonder my breath stunk. This is something I’m definitely questioning. Thx!
nodular thyroid— yep it’s hereditary in my family also. Although I had an uncle on my mom’s side who had thyroid cancer. Different endocrinologist and ENT’s say different things. I REALLY think this is all thyroid related especially since the very recent swelling and redness. Hoping to get to the bottom of this soon too! Thx! @Isaiah_40_31 you are a tremendous help as well as @vdm and others here on this forum. I Really Really appreciate it!!!
@Jules thank you!! I clicked on the link read a little for now. I need to reach out to them to see if they review or view for thyroid related issues along with vascular, artery and veins and of course the throat. I’ve paid for online opinions for some of my scans in the past but all said the same and wouldn’t let you talk with them or show specific questions and pictures. That’s what I would like is a one on one to ask what it is and not the answer of “it’s normal”. Again thanks!
I’m curious if taking selenium helps with your iodine intake issue?
My understanding is that selenium is needed to “take out the trash” (remove the by product) from the thyroid’s use of iodine.
I could imagine that if someone couldn’t handle the by product of using iodine it could look like an iodine issue when it was really low selenium? Just a thought.
I had left eagles surgery and they found calcified ligaments, scar tissue around the hyoid and thyroid and the left jugular vein blocked in 3 places. I just mention that since maybe Eagles is still part of the problem.
I had a thyroid goiter in high school and I wonder if the scar tissue found (40+ years later) was from that stretching out of the thyroid all those years ago.
Dr. Hepworth is good at looking for other things (not just Eagles). I’m not sure how easy it is to get in or if you want to (his office is as bad as ever, lots of dropped balls, etc…).
You mentioned your right jugular vein was large. I think most people have the right one larger than the left. I can imagine it could be even larger if it is trying to make up for a blockage somewhere (like the left jugular vein being compressed, as mine was from Eagles).
Thx! @vdm now I understand if it is tonsils growing back that they get larger with infection which could be the reason for drainage of sorts into my stomach that makes my stomach curl and rumble with each swallow. If it is tonsils I’d surely like to know why they continue to grow.
@juliezuber thank you! I’ve not read about the selenium until now. I’ve read that I can have my iodine checked now wondering about selenium. Interestingly right before I went on the low iodine diet and stopping the synthroid medication, my TSH was 0.9 , now it’s 2.44. I had stopped the thyroid medication for a year a few years back and my TSH was high at 4.9. Around 6 months before going on the diet the endocrinologist raised my thyroid medication from 25 mg to 50 mg. She also wanted me to start taken a multivitamin like Centrum. I did. Well while on diet I learned a lot about products and foods with iodine with vitamins being one that contains high levels especially if you’re consuming iodine already. Point being I think endocrinologist should check these minerals before prescribing medications for thyroid. If indeed it’s the iodine wreaking havoc then upping meds and adding vitamin was lowering my thyroid levels to hyperthyroidism.
I salute everyone here that’s had their styloids removed!! It’s a tough surgery. I’m so glad I saw that thing in my tongue before having the surgery and hoping I won’t need to have it. I’d be surprised if my ligaments weren’t calcified with as much pain as Ive had for all these years
I have a copy of my first thyroid ultrasound in 2006 and you wouldn’t believe the change in it, wider and taller and the arteries appear differently in newer ones, like thinner. I don’t have a good understanding of ultrasounds.
I’ve read your story but gonna go back and read again. Thank you for this information.
@juliezuber Oh and thanks a bunch for recommending Dr Hepworth!! I’m waiting to hear from BCBSNC Health Support wanting and needing an advocate. During this time I’d appreciate any drs recommendations! Especially since I’ve used up most of NC’s resources. Going to read about him again to see if he’d use my scans from 22, 21, 20, 19… and recent ultrasounds. I asked my GP for a scan either CTA or CTV to check the extra (?) veins or arteries and jugular vein. He said he’d have his nurse to ask a radiologist which would be better. My GP has been good to me supplying meds bloodwork and listening but after 20 years I think he’s getting bored with it. Another reason I need advocate. Thx again!
I have gone to MSK Neurology and can attest to his knowledge set. The nice thing with him is you get to meet with him over video chat and he will review your images with you live. There is no screening process, you pay for the visit, and you get the video call. I can’t say if he has a wealth of experience with your specific issue but can say he will do what he can to give you a full assessment.
@north No Way!!! Oh my goodness this is exactly what I’ve been looking for!! A radiologist to explain what’s there. I am definitely going to contact them to see if they could help me! Thank you!!
@Isaiah_40_31 [quote=“Isaiah_40_31, post:22, topic:15598”]
The main thing I noticed is that you have a kyphotic curve to your neck instead of the normal lordotic curve i.e. your curve is the opposite of what it should be
[/quote]
I’m working on posts in between chores. But I thought about what you said, can’t locate the written result at this time, mentioning my neck having flattening at C something in my spine, when I thought about my barium fluoroscopy swallow test. Notice the way my throat pushes in on my spine. Is this the area you’re talking about? My test looks different from the normal’s online. Of course There’s more dye left behind and objects of sorts. One thing Ive noticed on several of my scans and X-rays are this thing in front of my neck upwards to throat. Anyway the results from this was mild dysphagia and mucus on right side of throat.
For what it’s worth…
I have hypothyroid and find I feel best on desiccated thyroid (Armour, NP,…) and when my TSH is 1 (or slightly lower) with the free T3 and free T4 in the upper part of the normal range.
Desiccated is from animal source (usually pig) and has the full range of hormones the thyroid would be producing (Calcitonin, T1, T2, T3, T4). Synthroid is synthetic and just has T4 with the thought that your body will convert it to T3 as needed.
Some people feel better on one or the other.
The hard part for those of us with other chronic conditions is that the adrenals get messed up and that plays into the thyroid getting messed up.
IMHO…I feel like it becomes a lift all boats scenario, backing off things as the boat steadies.
There are supplements out there to help thyroid, they usually have tyrosine (the thyroid gland combines tyrosine and iodine to make thyroid hormone) and selenium in them as well.
If you try taking selenium, I would be curious in knowing if you think it helps with being able to tolerate iodine.
Best wishes.
Hepworth ordered a Jugular ultra sound to see if there was vein compression. He trained the imaging company to do the ultra sound per his specifications (not sure what the details are). He looks for the hour glass type flow numbers…blood pools above and below the constriction.
@CoHDa mentioned getting scans reviewed at Borg & Ide Imaging by a Dr Cole, they sounded very thorough; here’s the discussion about it: Question About C1 Shave - General - Living with Eagle
I don’t know whether you might be able to get your imaging looked at by them?
@MandS - When I mentioned your neck curve is opposite of what it should be, i wasn’t looking at a specific area but at the cervical spine in general. What you’ve pointed out in your swallow test images could be due to the reversed curve of your neck. As you can see in the images below, a reversed (kyphotic) neck curve isn’t always extreme but it could potentially result in throat malfunction as it would cause your head to be held in more of a forward, chin-tucked position.
The leftmost image is a textbook “perfect” cervical spine. It has a c-shape curvature and is considered to be healthy. In the middle, we have a straight neck or sometimes also referred to as military neck. Radiologists often report this as “loss of cervical lordosis” in their x-ray reports. The rightmost image shows a kyphosis or a reversal of the c-shape.
Here is the image of your neck that shows your reverse cervical spine curve. You can compare it to the 3 images above & see that your kyphotic curve is pretty pronounced:
@Isaiah_40_31 Oh yeah I see that. I was only looking at the bones in the spine sticking outwards but you’ve given a clearer picture. Going to add this to my list of questions that need to be addressed. Thx again!
That’s one reason I posted so many dicoms to compare and be sure. I’ve got another ct from 2006 that’s good for comparison of then and now. I’d welcome any your thoughts. Again thank you for taking the time to read and view my lengthy and maybe TMI posts. I’ve learned a lot through your “favorite things”. 
and recent ultrasounds. I asked my GP for a scan either CTA or CTV to check the extra (?) veins or arteries and jugular vein. He said he’d have his nurse to ask a radiologist which would be better. My GP has been good to me supplying meds bloodwork and listening but after 20 years I think he’s getting bored with it. Another reason I need advocate. Thx again!
There’s more dye left behind and objects of sorts. One thing Ive noticed on several of my scans and X-rays are this thing in front of my neck upwards to throat. Anyway the results from this was mild dysphagia and mucus on right side of throat.
