We will fill in a history of what has happened, but a quick question - we have an appointment with a maxillo facial doctor as a new symptom of blue/ purple tongue; having just come across eagles syndrome in the last few days, my question is , is there a clear link between the tongue and what ever can cause problems, and the eagles syndrome - would a doctor looking at problems of the tongue easily consider the artery, vein and nerves that are a problem in eagles syndrome? We have got authorisation for private appointment , so
we are hoping that it is yes there is a clear link, and he can do the scans to show it, we can then go to Dr Axon
thank you very much for your help.
The hypoglossal nerve can be affected by ES, but is more concerned with the motor function of the tongue. It’s not a symptom that I’ve heard of before that I can remember, but it’s supplied via the external carotid & drained via the internal jugular vein which can be affected by an angled styloid process, so perhaps that’s a link?
Does your daughter have other vascular symptoms- dizziness, fainting, head pressure- I think you mentioned that & headaches on your profile page? Are there any problems with control of her tongue?
I don’t imagine that a doctor would consider ES as a diagnosis for this; unfortunately many doctors aren’t aware of ES, or if they know about it are ignorant about most symptoms!
I will add to Jules post that even doctors who do know about ES are often ignorant of the variety of symptoms it can cause because they lack the knowledge or understanding of the cranial nerves it can affect & that each of those when irriated can create a unique set of symptoms. Add to that vascular impingement & a true symptoms puzzle is created. Based on our experience here, we have the bigger picture & understand why ES symptoms are so varied & what causes that variety.
Thank you Jules and Isaiah, I will send a history today for your full picture - would be grateful if you can advise whether the stylohyoid ( ligament?) would be seen on an upright MRI for’ craniovertebral junction’ we have just received the letter from our neurololgist that he wants to look at this in some detail - we came across Eagles syndrome after speaking with him last week, he was discounting POTS as our daughter can not lie flat at all, it it the opposite, she has to be upright, and he mentioned could be some issue with draining/ veins of the head, which is when I looked in google ’ headache, vein congested, can’t lie down’ and your site came up. Just wonder if the ligament will be seen? think the mri comes from the side as well to look at the neck in flex and extend. He will be ordering the mri, so wondering whether we need to contact him and ask specifically for this ligament to be also looked at, or whether enough information will be there to address it after wards? Very tricky, as we had already suggested Nutcracker Syndrome a few weeks ago, as a member on our headache NDPH forum is the first person to have her NDPH completely go ( after 7 years) once the nutcracker of her ‘Compression of the duodenum and left renal vein between the aorta and superior mesenteric artery’ was treated, she had a paper written on her last march 2020 Nutcracker mimicking New Daily Persisting Headache. The symptoms so fitted our daughter, but when they looked at the renal vein it was alright, the neurologist has now said we need to look carefully at her symptoms, as one can make many conditions ’ fit’ and we need to be systematic So am afraid now to suggest eagles, hope it can be seen on the MRI? Thankyou very much.
Normally you will see the styloids on a CT scan the best. Others can help you with loading of the scans and help to see the areas you need. Dont forget to remove any patient names and personal info for your privacy.
Since my daughter has POTS, your post caught my attention. She as well as myself and other family members also have EDS (Ehlers Danlos Syndrome) - a connective tissue disorder - usually shows as hypermobility of joints. There is heart related issues with vascular forms of EDS. I have had numerous surgeries for nerve compressions from scar tissue formations of unknown origin. Did the neurologist check your daughters blood pressure and heart rate laying, down, sitting and then standing for 10 minutes? If not, I would not rule out POTS or some sort of dysautonomia.
The other thing I can suggest is to get what they call a neurogram which is a very specialized MRI that reads nerves. It can read compression of nerves by ligaments. Keep exploring all your options. It took me 7 years to get my daughter diagnosed. It took me years of pain in my neck and jaw and then at its worst 5 years from there to get ES diagnosis. The docs kept telling me nothing wrong with my daughter, and I kept pushing and never gave up. As mothers, we know when something is wrong. The diagnostics have to be done to rule out all possible options. I kept going to specialists until I hit the right ones who recognized the symptoms and tests done to confirm.
To upload scans into a post, you need to click on the underlined up arrow at the top of the box where you type your post. From there you must choose a file from your computer then hit “upload” & the image will be uploaded into your post. It’s pretty simple. We do best w/ 3D images but can sometimes figure out bits of CT slices.
There are a number of pictures where the styloids are visible in the link you sent, however, none where the stylohyoid ligaments can be seen. They are invisible in a CT scan unless they have calcification on them. I am not very techy & was able to place a blue line to the styloid in the upper left in Fig. 3. The line is not labeled. You can also see the other styloid on the opposite side but my computer wouldn’t let me add another line (see what I mean about my lack of tech skills?! ). I also added a picture from the internet but the hyoid bone is not visible.
With ES, either the internal jugular vein or the internal carotid artery can become compressed, often between C-1 or C-2 & the styloid process. The compression usually isn’t constant but occurs w/ the head in certain positions which can vary from patient to patient. A CT w/ contrast is necessary to see vascular compression & the head must be in the provacative position when the scan is taken (i.e. the position that causes the symptoms to become worse). Your daughter’s symptoms are definitely among those seen in ES patients who have vascular compression.
An MRI does not do a good job of showing the styloids as the focus of MRIs is soft tissue. It is the area from the skull base to the hyoid bone that needs to be viewed in order to see the styloids & stylohyoid ligaments thus the MRI being ordered for your doctor may or may not be helpful in identifying if she has ES.
Hello Jules and Isaiah
I m uploading some existing scans would be grateful if you can have a look and see anything. Does the angle of the styloids give any clues, even if it is not the ligament? so really the MRI upright is not going to be any use for the ES, will need a ct scan? ( would you say with dye straight away, or do they do no dye and then dye?) thanks both very much
Thanks very much Snapple for your thoughts. When you say about POTS or some sort of dysautonomia, what do you mean? He is going to rule out POTS but he doesnt think it is because of this strange symptom of not being able to lie flat - because of more head pain, but he said to be sure, will do the tilt test ( though he knows she may not be able to go through with it). She has been having more and more an ’ energy draining away’ really just completely going for a few minutes, we are doing a chart now to see if there is a pattern when it happens - not so far, I am wondering if it could be something to do with the vagus nerve maybe being squashed? Just want to get this looked at, very worrying to say mildly, Looks like we will do an MRI upright, I will mention ES to the neurologist before and then will need to look at that separately. The neurogram sounds very good, our neurologist is very kind and does think outside the box, so hope he comes to that if needed. Much appreciated your thoughts, thankyou.
Hello Peony, and welcome to this lively community! We are here for social and emotional support, not medical advice. Of course peoples’ social and emotional experiences can’t be separated from the medical, so although medical discussions do take place, they are not the main function of this community. I’m just butting in here to make sure that your expectations of livingwitheagle.org are realistic.
We’re not doctors here, and although the moderators and many other members are very knowledgeable, they have no medical training. (And even if they did, a site that can be read by anyone who has a computer with internet access, isn’t the place for medical consults.)
Please keep this in mind as you get to know the others here. And please do get to know the others: listen, learn, share and support each other. This community is a part of a larger and very special network, BensFriends.org, where our motto is “To get support, give support”.
We’re glad you’re here, Peony, and wish you and your daughter all the best.
I suspect your daughter’s inability to lie down because of head pain is the result of vascular compression of some sort either by the styloids or possibly an upper cervical vertebra. This compression can cause intracranial hypertension (high blood pressure inside the skull) which puts pressure on the brain & can cause severe headaches. I completely understand what your daughter is going through as I had a head injury a few years ago from a cycling accident. When I was in the ER at the hospital, they had me lying flat while I awaited a CT scan of my head. In that position, I felt like my brain was going to explode. Once the head of the gurney was elevated, the pressure & pain subsided to a large degree. I had a concussion so my brain was swelling, & that’s why I felt the pressure. I fully expect intracranial hypertension could cause the same sort of feeling when a person is lying down.
Since your daughter has vascular compression symptoms, I would go straight for a CT scan w/ contrast so she doesn’t have to be subjected to high dose radiation twice in rapid succession (i.e. CT w/o contrast then one with). Head position is everything when looking for vascular compression. During the scan, she will need to have her head in the position that makes her symptoms the worst as a neutral head position may not show the compression at all.
I’m returning scan2 w/ lines pointing to what could be the styloid. If it is, it does look elongated, and it looks like there is calcification on the ligament. Please remember I am not a doctor, so what I’ve identified could be some other structure. It is in more or less the right place to be the styloid, but the scan is at an odd angle so the styloid angle isn’t quite correct, but I’m still guessing that’s what it is.
I hope some other members give opinions on this, but as Seenie said, we aren’t doctors…
POTS means Postural Orthostatic Tachycardia Syndrome. It is a form of dysautonomia. Orthostatic intolerance means “inability to remain upright” and often you can feel faint or pass out. A simple blood pressure and heart rate laying, sitting and standing can give a good idea as to whether to do a tilt table test. I suggest asking to do that first before going with a tilt table test especially since she has problems lying flat. When my daughter first started passing out, they called it vasovagal reaction although eventually years later got the POTS diagnosis. She did struggle with migraines and then GI problems. It involves the same areas and often those with Eagles have vagus nerve involvement and can have compression causing similiar symptoms. When you say she cant lie flat, what happens when she does? Does she have to sleep upright or elevated? That part doesnt really fit with POTS.
I do agree that it sounds like a vascular problem, so I agree with Isaiah that a CT with contrast would be a good way forward, but if you’re considering seeing Mr Axon privately, it might be better to wait & to speak to him first as he likes it done his way, or for your neuro to do tgat- Natty has just had a scan done & is going down that route so you could message her . It’s difficult to see on the scans; sometimes the styloids are really obvious, or calcified ligaments, but not so on the ones you’ve uploaded; we’ve had quite a few members with elongated C1 processes which can pinch the jugular vein between it & the styloids- that’s another possibility but wouldn’t want to comment on that, best left to a doctor…
Sounds like the neurologist is really helpful, so that’s good. You could always take a copy of a research paper mentioning jugular compression when you see the Neurologist next (there are some mentioned in the Newbies Guide Section you could look at), that might help. Difficult when you have to keep suggesting things to doctors, but your story about the person discovering Nutcracker syndrome is inspiring & shows how advocating for yourself does work!
thanks very much Jules, I was literally just thinking what can we take to the neurologist to suggest to look at, so that is so good exactly what you have suggested , I ll look in the newbies guide for something mentioning jugular compression. sorry whats tgat? Yes we would certainly go to dr Axon so will wait for the neurol to assess and he is very supportive , been a long path but we are so grateful we have eventually been referred to him. a brilliant doctor, kind and really wants to get to the bottom of the whats going on. Wish us luck!