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Cranial Pressure, Instability, Platysma spasm, hyoid instability. Why?
Category Discussion: I feel this post qualifies for ENT, pulmonary, neurology, and autoimmune categories, but I felt bones, joints, and muscles is most appropriate for generalization.
I'll start off by saying, at times, it feels like I have potentially life-threatening airway and venous compression in my neck. My cervical MRI did show "upper cervical straightening with spasm" while I was in supine. There are some other x-ray cervical findings along the lines of mild degeneration (atlas, mid-lower cervical). Before this became painful, a temporal CT showed "quite enlarged right jugular foramen and hypoplastic left". I have symptoms in alignment with thoracic outlet syndrome and I'm suspicious of clavicle venous compression/early stage thoracic embolism.
A little over a year ago, I overstretched while performing the "hand clasp" stretch because I could feel my right side was tighter than the left. The next day, on bench press, my shoulder slightly popped. I regained some strength and healing the next month, but eventually, my body fell apart.
I just visited Stanford with confirmation of symptoms in alignment with thoracic outlet syndrome, eustachian tube dysfunction, right posterior shoulder subluxation. 11th rib slippage right side. Degenerated L4-L5 with mild sciatica, shoulder and rib crepitus, hypermobile hyoid. Toe/finger increased ROM, hypermobile tongue. Knee platella slippage. Suspicion of hypermobile spectrum. Lengthy neck, upper cervical instability suspicion.
My brachial plexus feels terrible. I think I have upper cervical insability (MRI in supine showed upper cervical straightening with spasm). My pain physician confirmed my platysma and interscalene muscles are in contraction in the right side of my neck.
I have been sick and nauseated for a long time. I blow small amounts of green mucus and blood out my nose every day, notably consistent in the morning. It feels like I'm bleeding somewhere in my neck or esophagus, perhaps base of skull or hyoid and it accumulates in my nasal cavity. I really do think I have vagus nerve compression.
This hypermobile hyoid discovery is new to me and I wiggled it around a bitupon diagnosis. Seemingly consequentially, I coughed for many hours that day with a rattling esophagus while coughing, causing pain throughout my body, notably my ribs due to diaphragm contractions.
It feels like I'm not draining properly in my ear. My right ear produced more wax, pops a lot. I have recorded audio of the popping and vide of ear drum fluctuation. This issue is worse when I'm sick as I believe mucus gets trapped.
Former frequent marijuana smoker. It became very important that I quit because I have severe airway sensitivity now. I can't even be in proximity of smoke. I'm concerned about smoke/coughing damage to my hyoid. I still partake in edibles. Willing to quit edibles if there are concerns about psychogenic dystonia or saliva gland disruption.
I have chronic dry mouth and it doesn't go away months of no cannabis usage. I cannot get off of sleep meds due to severe insomnia. Seroquel, Lunesta, and Lorazepam all appear with either dry mouth or weird taste in mouth aide effects.
Invisalign braces gave me a bad posterior open bite. I'm fixing my bite with metal braces.
Mentally I am not okay. This is tough to deal with. I have pretty severe misophonia and now a bit of hyperacusis. I sometimes get spasms of tiny muscles in my ears. It's hard to sleep with even the slightest of noises. I'm quite bothered by loud chewing, phlegm noises, barking dogs, etc.
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Have you been evaluated for a hypermobile spectrum disorder such as hypermobile EDS?
I’m not familiar with some of the symptoms you’ve indicated, but the subluxations, cranial instability, GI issues, etc., even the Invisalign causing issues—those all commonly occur with EDS.
I’m sorry this is happening to you and I can’t be more helpful.
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2 ReactionsI am recently suspected to be on a hypermobile spectrum by a Stanford doctor. No diagnosis, but it is suspected. I figured out I have posterior subluxation of my SCJ, so this is my biggest task to diagnose and resolve as of now. I believe I only have subluxation, but dislocations can be life threatening. I believe I urgently need collarbone imaging done, I am going to try and get into Mayo too.
Before this issue even became painful, my temporal bone CT scan read "quite enlarged right and hypoplastic left" jugular foramen. The pain is much worse now and I think the jugular issues are worse. I think It's my SCJ. My platysma is in sustained constant contraction, visible upon frowning. I was told and I totally can feel a large, clogged lymph node in my collarbone. This issue travels up the base of my skull into my face and my right ear mainly doesn't stop popping. My left SCM seems to be cramping and more painful than the right, even though the right is enlarged. I get pulsatile tinnitus symptoms and spasms in my ear muscles. Occipital neuralgia symptoms to the forehead. right 11th rib slipping. right arm posterior subluxation, crepitus in right collarbone, right shoulder, and less crepitus left shoulder. Blown out lumbar with mild left sided sciatica. Left foot pain. Likely hypermobile spectrum. Mild multilevel cervical degeneration (including the atlas). Very elevated total bilirubin. Feeling fatigued, sick, itchy, GI issues, etc.
Hello @adam717. I combined your new discussion with your existing discussion "Cranial Pressure, Instability, Platysma spasm, hyoid instability. Why?" - connect.mayoclinic.org/discussion/cranial-pressure-instability-platysma-spasm-hyoid-instability-why/ to help members stay in one spot and to see your update.
@adam717, it sounds like you are seeking a better diagnosis while waiting for a possible confirmation of being on the hypermobile spectrum. Should you want to seek a second opinion with Mayo Clinic, you can start that request here, http://mayocl.in/1mtmR63.
@adam717, you are juggling a lot of different symptoms right now, are you able to find ways to cope with the struggle that can come along with many medical issues? How are you doing balancing these symptoms while seeking diagnoses and treatments?
Thanks for the combination. Recently received a call from my request and I should receive a call from an orthopedist soon 🙂 Though I'm in pain, I still like to go on walks with daylight, use the sauna at the gym, eat good food, and work on creative projects. I struggle with fight or flight, pacing back and forth, staring at the floor for too long, etc. I am interested in more virtual support groups, more lobby-like or group meeting/zoom conference style.
I agree with the comment above. It certainly sounds like should be evaluated for hypermobile EDS.
I unfortunately, suffer from some of the same issues. I don't have the official hEDS diagnosis yet, as I haven't found someone within Mayo that is overly knowledgeable about it. I just have Connective Tissue disorder listed. the FL campus does have some Drs that are more knowledgeable about it, however I haven't traveled there. I am in Wisconsin.
Hoping to get another referral to a neurosurgeon in Rochester. The thing with Cervical instability, there are not many surgeons that are familiar with doing surgery. I am in some very knowledgeable FB groups for EDS and cervical stability.
I wish you the best of luck. I don't wish this upon anyone.