My 28 yo son (dx w ES n IVJ compression on (L)) complains of extremity numbness w working out… Now I am new to Eagle Syndrome n am a retired PA so I’m pretty familiar w anatomy n physiology but I don’t know what to make of some of the things he complains about. Please all of you w hx of or currently have IVJ compression, simply list all of ur sx (minor n major) u experience (or have experienced). Much appreciated!
There’s info about vascular ES in the Newbies Guide Section if you’ve not seen it, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I had bilateral jugular compression, I never experienced the numbness your son’s had, although it could potentially be from accessory nerve compression, or possibly vagus nerve compression?
I had a constant off-balance feeling, like being drunk, head and ear pressure, headaches if I laid flat, dizzy spells, feelings of falling, felt like I was shorter/ closer to the floor, falling sensation & some weird sort of rolling, sucking sensation in my head, as well as tiredness & brain fog. I stopped working out because of the head pressure…
Thank you so much, that’s very enlightening. I’ve been having a difficult time navigating the site but am working on it. The link is most appreciated. The more I learn about ES the more concerned I become - probably more a “mom thing” than anything I suppose…
Since your son has been diagnosed w/ vascular ES, the best doctor for him to see a Dr Hepworth in Denver. It will take awhile for you to get in for an appt because he books out pretty far but it’s worth the wait to see him.
Hey man although I’m not a medical professional at all, and I might be 100% wrong, complaints of extremity numbness (especially arms), sounds a lot, like almost 100% like neurogenic thoracic outlet syndrome. And if he has other symptoms (dizziness, vertigo, etc etc) he might also have a form of arterial thoracic syndrome.
- I’d suggest you search up MSK neurology and go to his TOS article, just search up “MSK neurology TOS” and then there’s an article there.
- I’d also suggest search up “povilas pauliukas slideshare thoracic outlet syndrome” which is an article from a Lithuanian doctor I found recently that goes into depth of TOS and a different phenomena he calls cervical outlet syndrome.
If your son struggles more with neuroligical symptoms then I’d skip to this 16th slide of the second article as he might have a cervical outlet syndrome where the main issue is vertebroarterial insufficiency with a (relatively) minor brachial plexus compression. If the main issue is 100% numbness and his neurological symptoms are almost non existent then I’d read the first 16 slides of the second article and then entire first article as those focus a lot on traditional thoracic outlet syndrome.
But the numbness after exercise is very very indicative of TOS, like very very indicative. (Unless he has some slipped or bulging disk in his spine, I’m assuming his spine MRI’s are clean, otherwise I’d get a spine MRI done).
Thoracic Outlet Syndrome and Eagles are often found together, I have both, one theory I read was because eagles causes you to hold your neck in strange positions, I myself have military neck, this can make symptoms of TOS worse, I’ve read about some people having TOS surgery first, but for me I’ve decided to have my Eagles fixed first and then see if after doing some pt, if the TOS improves by itself, I’m not a medical expert this is just my opinion and I may be completely wrong, but this is how I’ve decided to deal with it. I may eventually need TOS surgery as well but I’m hopeful to fix it with pt.
Thanks for your input. I’ll pass info on to my son but his complaint is not only upper extremities but legs too. A bit unusual…
That’s a wise decision, @Millymay. We have had a number of members w/ TOS type symptoms that resolved substantially after ES surgery. It may well be that getting TOS PT post ES will take care of that for you.
So I do have symptoms of TOC. Was told by (ignored) by multiple doctors that I don’t. My left scalenes are ridiculously tight and have also told them it feels like my 1 and 2 ribs are pulled up and smashed against my clavicle. The scalenes there (at the clavicle) feel like bone. I can get to some trigger points and get some relief. Am on a path to get those muscles botoxed by Physiatrist … and will continue if ES is not my diagnosis (although I certainly have what seems to be ‘all’ the symptoms, including weird hyoid to jaw tightness and hyoid bone calcification? that I can feel on left side). TBD…
@Leah - TOS is something you can talk to your physiatrist about. At the very least (s)he should be able to refer you to a neurologist who can do the proper testing. We’ve had a number of members over the years who’ve had TOS symptoms that either fully or substantially resolved after their styloid(s) was/were removed so that’s all the more reason to confirm the status of your styloids.
If you have tight scalenes on one side, you might want to check for thoracic scoliosis. Scalenes might be pulling hard to keep the head straight, as otherwise if scoliosis is present, the head obviously would flex sideways if not pulled to the opposite direction from the scoliosis curve
Thank you, a neurologist was where I was headed before I hit this detour… And based on what I’m reading, I suspect it’s likely related. Like others my situation is only one sided with symptoms, I have asked over and over again. What is the difference between my left and my right since the MRI would suggest I should have more problems on my right side. No one has come up with an answer until this, so I’m hoping much will be resolved with removal.
So I do have scoliosis now… No clue how that happened … life! I suppose. Not sure if it’s thoracic scoliosis so I will look into that as well. Thank you so much for your input.