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Old 10-19-2015, 03:12 AM
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SnappleofDiscord SnappleofDiscord is offline
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SnappleofDiscord SnappleofDiscord is offline
Junior Member
SnappleofDiscord's Avatar
 
Join Date: Jan 2015
Location: On the Road
Posts: 27
8 yr Member
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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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