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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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10-15-2015, 10:59 PM | #11 | |||
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I live!!
Or at least my body still shambles across the earth. The surgical pain has mostly resolved, unfortunately after that fateful ER visit, pretty much All of the nerve issues returned. So all in all I guess I'm healing up well. It's like I Never had surgery at all. I still don't necessarily think it was a Bad Idea. Just that it hasn't resolved my issue. It made more room for my brachial plexus nerves, removed the crazy extra wide, blade like rib that was mushing them, and cut the extra short, steel cables that was my anterior scalene. The ER visit, and cray as that was, turned up with something interesting too. The CT scan to make sure the sudden pain wasn't from a post surgical blood clot luckily didn't find any blood clots, but it did find a calcified ligament in my neck. The ER staff poo pooed it, but when I got the results it said I had something called Eagle Syndrome. I'd never heard or it! Apparently it's elongated styloid processes, or calcification of the stylohyoid ligament and muscle. It's asymptomatic in most people, but in some people it causes a lot of crazy problems and can irritate the arteries and even cranial nerves. It's notorious for causing issues like gagging, sudden pain when turning your head (!!!), migraines, brain fog, etc. It can also wreak havoc on the Spinal Accessory Nerve, with innervates the Trapezius (Scapula, shoulder elevation, arm abduction), and the Sternocleidomastoid (head tilt and turning, straightening neck)! WHAAAT! It's apparently also very unusual, and unfortunately the Radiologist seems to be the one who was most familiar with it. I don't just have an elongated spike, but the whole stylohyoid muscle has calcified into a spike on my right side. The gagging etc may be separate from my TOS issues, or it may be part of why I can't heal. I'm trying to track down someone who is familiar enough with it to help me. If the TOS fight has been any indication tho.. this could take some time.. Just something to look in to, people with failed surgeries or mysterious symptoms! Maybe there's a spike in your neck. I'm also building up an impressive collection of scholarly articles on how Eagle's syndrome produces a lot of TOS like symptoms, arm and shoulder pain/weakness if anyone is interested! |
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"Thanks for this!" says: | Aqua4fun (11-23-2015) |
10-15-2015, 11:04 PM | #12 | |||
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Jzp119- Positivity, bro.
Akash- They are actually likely 700 centipedes wearing a lab coat and scrubs as a disguise, I'm beginning to suspect. Eight- Torodal was the ONLY thing that calmed the pain in the ER and when I woke up from surgery! I didn't know you could get an Rx for it at home! I tried to get it, but they gave me more oxy's instead. They are basically Ipecac Pills for me. Hope you're starting to feel better and glad you have Some relief |
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10-16-2015, 11:09 AM | #13 | |||
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You can add a post about Eagle Syndrome & any info links in our useful sticky thread, it might be helpful for future members.
Do you think you had that all along , or did it come about after the surgery? I'm surprised the TOS surgeon didn't find it during testing .
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10-16-2015, 08:00 PM | #14 | |||
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Quote:
Docs say my calcification is post traumatic, likely from a spill I took a few months after initially injuring my shoulder. I bashed my face up pretty good because I couldn't use my arm to ace myself. Some people have it all along and only get symptoms after trauma, getting their tonsils out, or some kind of disruption or degeneration that changes how they use their neck (like cervical injury, kyphosis, etc) I didn't have any of the super weird symptoms at the start of the TOS issues, it was "normal" (as normal as TOS gets) nerve path and compression symptoms. About 1.5 years in to this is when the eagle style symptoms started, likely as the calcification grew. |
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"Thanks for this!" says: | Aqua4fun (11-23-2015) |
10-17-2015, 03:13 PM | #15 | ||
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darn it. i think even i need to get it checked out. however, from what little i have read of it, it seems to be very prominent? radiologists shouldn't miss it?
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10-17-2015, 03:18 PM | #16 | ||
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On my left side, I do have sensation of hypersalivation, burning when swallowing (not mentioned), facial sensations on turning, and tinnitus.
These are also common to cervical instability.. http://radiopaedia.org/articles/eagle-syndrome Cranial nerve impingement Quote:
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10-17-2015, 05:54 PM | #17 | ||
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Hi Snapple, did you have a foreign body sensation in the throat or ear pain or any of the other symptoms in specific?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3191668/ Quote:
Quote:
Otalgia = ear pain. Dysphagia = discomfort in swallowing. https://en.wikipedia.org/wiki/Dysphagia Carotidynia is a syndrome characterized by unilateral (one-sided) tenderness of the carotid artery, near the bifurcation. It was first described in 1927 by Temple Fay. |
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10-19-2015, 03:12 AM | #18 | |||
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Akash- It's worth a shot, right? Worst that can happen is you have to keep looking for some way to get relief. You're already doing that.
You know what it's like to think you've found a way out only to come to a dead end, so keep your options open! I'm chasing this tail in addition to my TOS arm fight because Who knows?! It may be separate, but the head and neck issues are Just as disabling as the nerve problems. Pain is one thing, but dead arm pain + constant gagging + feeling like I'm having a stroke is Insane! If I can ditch one I can fight the other better. When my ER follow up resulted in me waiting for the doctor to do a Google search, I got scared and tracked down some people with experience. This board is great for Q&A about Eagles from patients who are very experienced and knowledgable. The mod is a library of medical texts. http://www.livingwitheagle.org/ From what I'm now learning, who detects ES and who considers it pathological rather than a natural variant can a gamble. Dentists, ENT, vascular drs, neck specialists have all been cited as The diagnostic. Some docs are also not down with the ES. Much like the TOS. Even among the medical professional believers there is dissent as to how long is an elongated styloid and the extent symptoms can manifest. Also, TOS, there are vascular and neurological symptoms, separate or in some combination, which certain docs understand and others consider hysteria. How many TOS docs have you read about on here who tell patients things like "You can't have TOS because your hand is too warm"? Out of all my crazy docs, one thing I did eventually have was a Brilliant radiologist (not the one who found the bone, that was a student radiologist) However, when going over detailed scans they are looking in a very narrow area. I was looking at a previous MRI, truing to find something my PT mentioned, when I found you can See my calcified stylohyoid muscle Clearly in the scout image series. The study itself didn't extend far enough into my neck to capture it in detail. This didn't turn up in the report. The radiologist was cued to check for other issues, or was unfamiliar with this Atypical issue, but probably more so that during a cervical MRI the radiologist is really scrutinizing the Spine and looking for pinches, bulges, or tumors. It's easy to not see a tiny bone out of place on the Macro scale when you're looking Micro. Cervical instability is the frequent culprit for cranial nerve issues. It makes more sense. The neck is easily maligned, easily injured, and the root of the foul tree that is nerve problems. Positional variations can even drastically mess with the nerve space between vertebrae, as well as lifestyle and aging. Neck/head/upper body injury followed by persistent nerve issues? It's usually the cervical spine. "When you hear hoof beats, look for horses not zebras." I had my neck checked inside, outside and upside down tho. Years of pt, life changes, special braces, stretching, arch support, exercises, acupuncture, etc.. Everything in my spine looks great. No bulges, no compression, no degeneration. Which is fantastic.. But also No Help. Due to the structure of the muscles and placement of the styloid process, the symptoms can be very similar. This picture of someone's Insanely elongated styloids illustrates it well. It basically cups or butts up to the spine in certain head positions. http://www.scielo.br/img/revistas/rb...a04enfig02.jpg Finally.. I had and have (in increasing proportions) all of these, but from what I can tell it's in an odd way. I don't know tho.. For example "Trouble swallowing" for ES about as specific as "shoulder pain" for TOS. That can mean SO many things!! It's very subjective and I could only identify it as Pain. Additionally, it's unclear if my Styloid process is elongated as of yet. My calcification comes from the Hyoid in my neck and tapers up toward my styloid, and may be a jointed spike or connect. So I'm pinching more so from the underside, or a solid bar across the nerves, and those with elongated styloids are pinching from the top. I'm going to go in to detail to see if any of this helps put your puzzle together, so please forgive the long list of complaints: Some of the first most noticeable things (other than and atypical of TOS, brachial plexus) were the weird tongue cramps, severe tongue burning, and inability to swallow foods if my neck and shoulders felt tight. I have a lot of trouble with dry food or bread. There is what I suppose could be described as a foreign body sensation, but I interpreted it as More weird cramping in the back right of my throat, along with a tight numbness around my jaw joint. (I tried to treat this as dental adjustment, acid reflux, ustomach ulcer, or stress clenching for years with it only getting worse) Then the right side of my face started to feel slow and thick. The stabbing headaches, tinnitus, ear pain, blurred vision, severe disorientation started along with a Very tender and reactive muscle lump under my right ear. Scalene massages made me worse. This also started around the same time that head movements or lifting my arm (which cramps my neck) would cause sudden gagging. Like I had a hairball. Leaning over, looking up, moving my head and arms floors me with gagging. As that became worse, I developed right sided facial spasms, electric pain, numbness and burning. Think Popeye face. My right side neck swells and even touching it lightly sets off all my TOS arm and shoulder symptoms and made me dizzy and unable to form a clear thought. I can now no longer wear heavy coats, necklaces , or clothing with collars, and more recently anything that's tight near my neck like a bra. (It's cold here!) And ya know.. T-Rex arm, cold dead hand, burning nerves down my arm etc. Still out of all of this it made sense that it was an extension of the pain and cramping in my neck and shoulder. Just weird nerve stuff. How else could I describe it? Also, bringing up the gagging or how scary the cognitive symptoms are tends to change the Dr exam from "TOS, shoulder injury" to "psychological evaluation", so I backed off. Find out! Why not? Maybe this can end. Step 1 seems to be an xray or CT scan with contrast and an otolaryngologist or radiologist who has heard of it. |
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10-20-2015, 07:00 PM | #19 | ||
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I think I have a disc bulge with a significant protrusion at C6-C7, more so on the left side, thanks to either the muscle or ligament structure having a failure, which is causing all my nerve symptoms, and left upper back spasm. Wry neck and TOS on the right is a result, with left Upper Trap in constant spasm.
My problem is the only solution is ACDF (anterior cervical fusion) or disc replacement. Former more likely to be recommended. In both, the longus colli muscle (aka deep neck flexors which are essential to maintain neck lordosis) are dissected and taken "off" the spinal segments to reach them. Great stuff. So this would mean overactive scalenes and SCM which would mean trading nerve root irritation fo TOS and cervicogenic headaches. Isn't medicine wonderful?? |
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"Thanks for this!" says: | Aqua4fun (11-23-2015) |
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