My dysautonomia issues have now worsened and I’ve been admitted to London Health Sciences Hospital in London Ontario
Internal medicine, cardio and neuro teams are all working to test and figure it out but I keep mentioning neck pain and eagles finding on a CT report from October and they don’t know what to make of it.
I have major pain and throbbing in both sides of neck when standing and my heart goes up from 60 bpm to 160 in minutes of standing
Now I have issues swallowing which is why I went to ER
My question is and I’ve asked it before, but I’ll ask differently how do I tell three huge teams at a major hospital that I think I need ct with contrast. I had full head and spine MRI this morning with “no findings” but they didn’t know what Eagles syndrome is
My dysautonomia group says it could be connected to Eagles but also be “coat hanger syndrome”
I’m exhausted, dizzy and having severe brain fog from a sleep disorder and now being off my medications
I don’t know how to keep advocating for Eagles and rule out it’s vascular implications without being called a basket case again… ugh. Help?
Have you got anyone to help you? We normally suggest that members print off research articles which help their case to show doctors; I don’t know if that’s possible for you at the moment, or if yiu have a partner/ friend who can help? We have links to articles on here, any which mention vascular ES, & perhaps the vagus nerve would be useful.
I’m sorry I can’t post links here for you at the moment to make it easier for you! One which might be useful for you was posted by JustBreathe, in the discussion Symptoms list, it’s called Styloidogenic Jugular Venous Compression Syndrome: Clinical Features & Case Series. Onelessstyloid has posted a link to a useful article too, it’s in a discussion Article In Public Domain. There’s more mentioned in the Newbies Guide Section, there are discussions titled ‘ES Info…’, there’s one about Vascular ES & one about A Scary Subject, which mentions the very rare complication of strokes. Plus if you search for vagus nerve, it should come up with info about the effects of irritation on the vagus nerve.
Sounds like you’re very strong but getting very tired, hope you’re able to keep pushing for answers. Thinking of you & will pray that you get the right treatment.
Hi Jules,
thank you for your help. My mom is coming to see me today (2h drive) I am in a brain fog and scattered. Not getting any sleep due to noise here. I will look for those articles, thank you. I have a hard time thinking of what to do next.
I am so sorry you are dealing with such severe dysautonomia and I can relate! As Jules mentioned above, the article I linked earlier would be a helpful resource if the doctors are willing to look at it. It is from a very respectable neuro-surgical group in AZ.
As for your question about dysautonomia in relation to vascular/vagus compression with ES - YES!
This is why I can say that with such confidence. I had a tilt table test done by the top neurocardiologist in the world, he wrote the first book on POTS and dysautonomia. During this test my heart stopped at 20 minutes, upon returning the table to level I immediately rebounded to my “normal” and was diagnosed with neurally mediated POTS. Fast forward to now, 3 years later with my recent styloidectomy (which revealed 100% IJV occlusion and severe vagus nerve compression) my POTS is now 75% resolved. This surgery is the intervention that has directly made a positive affect on the POTS. My story is further complicated with a CSF leak and addressing that has also been helpful.
I hope this is helpful to you. Dysautonomia is incredibly complicated but elongated styloids may well be a piece of your puzzle and is well worth demanding a head and neck CT with contrast to rule out vascular ES as a factor. Keep in mind that positioning is very important and you may only be symptomatic with your head outside of neutral ie: flexion and or rotation is commonly provocative as it moves the styloid into a position that entrap the IJV/vagus between the styloid and C1 tubercle. The best way to find this is with a Doppler flow study or provocative venogram as the CT is done in neutral.
Hi Karen, I live near London and also have ES and dysautonomia. I had surgery at LHSC- Vic Campus. Sent you a private message, hope you’re able to see that.
I recently passed out 1 month after a car accident. About 3 weeks later I did a tilt table test and passed completely out after about 25 min. I had my large SP’s taken out in 2013 and 2014, but didn’t have any syncope episodes until a month after the recent car accident (this past August). My Dr. thinks that it is probably bc I have had previous neck surgeries and the accident aggravated it, but I don’t know. Apparently I all of a sudden have autonomic dysfunction (aka dysautonomia) now and have had a couple episodes of syncope since then. This is no fun to deal with. I just got back on this site to see if others have had similar problems.
Poor you; that sounds awful…what tests have you had done, CT or MRI etc? Just wondering if any nerve damage was picked up, or if they’ve looked to see if there’s any regrowth?
I can remember one member having POTS after surgery, which can be autonomic nervous system disorder. Not sure about anyone developing dysautonomia post surgery, we have quite a few members who have it alongside ES though.
HI Karen,
Im newly diagnosed ES and have Ehlers Danlos Syndrome (EDS)- hypermobility type. My daughter (age 25) has EDS as well as disabled from POTS / dysautonomia since the age of 13. Ive flown her all over the country to specialists including 10 day inpatient at Vanderbilt in Nashville in search of something to improve her POTS. Its not uncommon for dysautonomia patients to have sleep disorders and brain fog. My daughter has found little improvement with any medications, and due to side effects no longer takes them and the only thing that helps her dizzy symptoms is weekly saline infusions. What type or sub-type of dysautonomia do you have? It sounds to me like your teams are not well versed in Eagles Syndrome. Given you have CT without contrast that indicates its presence, I suggest you seek out a consult with an ES specialist and/or print off a recent peer-reviewed study that supports (re: ct scan w and w/o contrast) and hand to your team in support of CT scan w contrast. I had a MRI last year which shows nothing. Finally had a CT scan a couple week ago that supports the finding. I gave my PCP a copy of an 2018 ES study to get him to order it and had to arm twist to get it so you may have to be forceful. Either way, an expert in field for a consult is still suggested.