New here, symptoms since 2015

Symptoms and Treatments
1

Hi all,

New to this forum. What a wonderful wealth of knowledge and community this is! I haven’t been diagnosed with eagle syndrome, however after much research It’s seeming more probable. For reference I’m 34f.

One morning in 2015 I woke up with my under eyes swollen and my brain feeling like it was being squeezed out of my skull. I chalked this up to being allergies and saw a dermatologist for testing. It unfortunately progressed to more severe symptoms and I still have no answers. It’s been a miserable, painful few years. I have to sleep sitting up because my head pressure is so awful. I’ve been seen at Nebraska medicine and most recently Mayo Clinic where I stayed for 5 days. I was seen by a lovely neuro that did tons of different tests to no avail. I’ve only ever gotten a loose Dx of sicca, a positive ANA, & a positive connective tissue cascade.

For the past 9 yrs, the list of doctors I’ve seen have been neurologists, rheumatologists, ents, internal med, hematologist, allergist, immunologist, infectious disease. I’ve had numerous CT scans and MRI’s of the head, neck & cervical spine. All seemingly normal.

My list of symptoms since 2015:

•head pressure when lying flat (feeling like my brain is burning)
•eyes sunken in/orbital fat loss
•pressure in roof of mouth, back of nose
•paresthesia
•phantom smells (smoke,burning)
•chronic fatigue
•severe back/neck pain
•snowy vision - white/blurry at times
•clicking noise somewhere in skull
•teeth issues
•debilitating left sided migraines behind the eye, radiates into jaw and left ear, last for days.

I’m sure there’s some im leaving out, but it’s crazy the pain you can learn to tolerate. It becomes the norm. The specialists I’ve seen, if they don’t feel bad they can’t help me, I’m either being gaslit or brushed off. The neurologists send me to the rheumatologist, the rheumatologists send me back to the neuros, the neuros ask me why I’m not being seen by a rheumatologist or on medication. This has been happening for almost a decade. I am SO tired I’ve thrown in the towel. The only provider I haven’t seen in a long time who I have an appointment with is an ENT (again). I’m seeing him tomorrow & other than all my past medical records, I will bring print outs of everything I’ve been reading regarding eagle syndrome.

I’ve cried for years hoping and praying for answers, just dealing with the pain and fatigue. Many of the neurologists I’ve seen suspect ALS or MS & Lyme, but it always gets ruled out. I’m so frustrated by the years wasted, the doctors not listening, it’s so disheartening. The neuros give me migraine medication and send me on my way.

I came across this forum the other night as I was googling what could be causing my newest symptom - left parotid aching along into my ear canal. My cheekbones are sort of ‘tingling’ if that makes any sense.

I’ve never heard of Eagle Syndrome prior to this. Hopefully the ENT could shed some light on why the left side of my head/face has been hurting so much lately.

Thanks for reading if you made it this far!

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Welcome to our forum, @La0915! I’m so, so sorry to know how long you’ve been struggling undiagnosed & all that you’ve been through trying to get answers. Unfortunately, because ES has such diverse symptoms, many of our members have similar stories.

I applaud you for not giving up hope & continuing to search for answers. Mayo Clinic is a prestigious institution for many things medical but not for ES unfortunately. ES symptoms & treatment definitely need to be added to what they know & treat so doctors at all the Mayos across the US could be helpful for those who have it. We have several doctors in Nebraska on our Doctors List & any one of them could help you get a proper diagnosis -

•Dr Daniel Lydiatt, University of Nebraska Medical Center, Methodist Clinic . Clinic 402- 559- 1700, Office 402- 559- 7775, Methodist Clinic 402- 354- 5890 https://www.md.com/doctor/daniel-lydiatt-md
•Dr William Lydiatt, 8303 Dodge St., Omaha, NE, (402) 354-5244, https://providers.bestcare.org/provider/William+M.+Lydiatt/1494487
•Dr Coughlin, Methodist Hospital, Omaha (Head and Neck Oncologist, has done external skull base surgery 7-10 times, and steroid injections) https://www.mhsdoctors.com/physicians/11116003

Your symptoms sound like you may have vascular ES/compression of your internal jugular vein AKA Vascular Outflow Obstruction. Getting a CT scan w/ contrast will be your best initial diagnostic tool. If you notice your symptoms get worse when your head is in certain positions, then requesting your doctor order the scan to be done in those head positions (facing left/righ, up/down or on the diagonals) will help give a more accurate diagnosis. There are only a few doctors on our doctors list who do the surgery for that - Dr. Hepworth in Denver, Dr. Nakaji in Phoenix, & Dr. Costantino in New York.

@Jules has written a couple of very good posts about ES symtpoms which you could also print to take to your appt. tomorrow, though they are long but backed up by research.

I hope you get the answers you need from this forum & your tears can turn to rejoicing. We’re here for you as you continue on your journey. I will pray that you find the best possible doctor(s) to diagnose & treat you.

:hugs:

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I’m so sorry that you’ve had symptoms for so long and have never been able to find a cause! When you have your appointment, you could see if you’re able to get copies of your CT scans of your head & neck, then you could have a look at them & see if you can see the styloids & compare them to images of people with elongated styloids- we’re not medical professionals on here, but could have a look if you upload any to give you an idea if ES is worth pursuing. Unfortunately there’s much ignorance about ES with doctors, and radiologists rarely mention the styloids unless they’re specifically asked to look at them.
I agree with all @Isaiah_40_31 has said, & it sounds like you could perhaps have nerve pain from the Trigeminal or Facial nerve with the new symptoms you’ve been experiencing, so a nerve pain medication might help. There’s info about this in the Newbies Guide Section:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
We have had a few members with symptoms of Sjogrens Syndrome (have you actually been diagnosed officially with that, it sounds like you have it?), whether there’s a link or not I don’t know…I have very dry eyes & mouth, this all started around the same time as my ES symptoms started. Ben’s Friends do also have a Sjogrens support group too, here’s a link:
Finding support for Sjogren’s Syndrome? Connect with people like you. - Sjögren’s Syndrome Support (sjogrenssyndromesupport.org)
It’s a good idea to take info with you about ES, I hope that your doctor listens to you, please let us know how you get on! :hugs:

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Thank you & @Isaiah_40_31 so much for the helpful info!! I’ve been browsing all the threads and navigating the site for a few days now. I saw the ENT today - and though I always temper my expectations when meeting any new doctor at this point, i remain cautiously optimistic. I had just a previous record from Mayo Clinic with me, and some print outs regarding eagle syndrome.

I described my symptoms and I usually try to avoid getting into a lengthy past history as most Dr’s get confused along the way as I try and reiterate a 10 year history- so I try to keep it short & sweet. He was surprised when I mentioned that two of my prior doctors had refused a lumbar puncture, he said that that’s the first course of action he’d of taken and suggest I see the neurology department at Columbia university (I live in NJ). When I mentioned eagle syndrome he seemed incredibly doubtful, as I didn’t have any throat issues. He didn’t look at anything I brought in, which wasn’t much anyway.

His diagnoses is TMJ. I don’t disagree that there may be some dysfunction there, but my partoid and ear canal have been so incredibly painful lately (left side). He handed me a pamphlet for TMJ & again mentioned to try and see someone at the university hospital. I have a very loose diagnosis of Sjogrens from a rheumatologist I saw back in 2015.

I filled out the paperwork for the release of the imaging i got done Mayo Clinic, I’m just waiting for them to email me or upload them into the patient portal. I will try and upload them once i get access. I’m scheduled for an MRI on September 9th via the neuro I’ve just seen, but given my current pain around the parotid and ear and very little help or guidance from the ENT, it just seems like an eternity to wait. My anxiety is growing worse along with the pain and I’m honestly tempted to just have my husband drop me off at the ER where i can get some scans done even if it means being there all day. I can’t help but think something more than just TMJ is responsible for all the left-sided facial pain. :cry: Would you suggest I go forth with that? The ER brings on so much anxiety for me as I’ve spent quite a bit of time there in the past, but at this point I’d rather just know for sure.

Again, thanks so much for the kindness and support…it means so much! 🩷

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@La0915 - I saw in your profile you lived in NJ but you mentioned seeing doctors at Nebraska Medicine so I thought maybe you’d moved there from NJ, but it sounds like it was the opposite.

Here are the doctors closer to you that deal w/ vascular ES. Drs. Costantino & Lo often work together for vascular ES surgeries & Dr. Coniglio & Dr. Higashimori work together likewise:

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
•Dr. Larry Lo, 850 Northern Bl, Floor 1, Great Neck, NY, (516) 773-7737, https://www.northwell.edu/find-care/find-a-doctor/neurosurgery/dr-sheng-fu-larry-lo-md-11511781
•Dr Coniglio, Rochester, John U. Coniglio, MD | Rochester Regional Health does hyoid bone surgery & works with Dr. Taka Higashimori for VES and C1 shave, also does hyoid trim if needed.
•Dr. Taka Higashimori,

IJV compression causes intracranial hypertension (IH - high blood pressure in the brain/CSF pressure) due to the lack of ability for blood to flow out of the brain at a normal rate via the IJVs if they are partially closed from compression by the styloid(s) or styloid(s) & C1 or other local tissues. A lumbar puncture measures CSF pressure in the spinal column which can be indicative of a CSF leak, but it’s a pretty invasive procedure.

It’s a misconception on the part of many doctors who know just a little about ES that there must be throat symptoms present i.e. pain, burning, troubles swallowing or the feeling of something stuck in the throat, in order for ES to be present. Not all people who have elongated styloids & are symptomatic have throat symptoms. It all depends on which nerves are being irritated by the styloids/calcified stylohyoid ligaments & even more particularly which part of the nerve is irritated. The parotid gland is innervated by the glossopharnygeal nerve (GPN), & thus I speculate your
parotid pain could be coming from that nerve. The GPN can also cause ear pain but so can the trigeminal nerve (TN) as @Jules mentioned & possibly the facial nerve. These nerves are common perpetrators of ES pain/symptoms. The images below will help you to see where these nerves can cause the pain they do when they are upset:

Trigeminal Nerve

Facial Nerve

Glossopharyngeal Nerve

As you’ve experienced w/ the ER, they’re often not very helpful. You could push for a CT scan with contrast of the area from skull base to hyoid bone. That may be more helpful than your upcoming MRI. If they offer pain meds, tell them you need nerve pain meds such as Gabapentin, Amitriptyline or Carbamazepine though these can take a couple of weeks to make a significant difference in your pain level as they need to build up in your system so an Rx pain med might also be helpful.
Non-meds options are to ice your neck/parotid on the painful side - 15 min on & 45 min off several times/day. If ice makes pain worse, try heat. Also try sleeping w/ your head elevated at night. This takes some getting used to but has been helpful for our members w/ IH from IJV compression.

I hope you’re able to get some help for pain relief prior to your MRI. :pray: :hugs:

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Just a thought @La0915 , with the pain around your parotid gland, if it’s painful when you eat, it could be a salivary gland stone, especially as you have a tentative SjS diagnosis. If it’s not a sharp pain after eating then ignore this & it’s potentially more likely to be nerve pain.