New to this forum/posting but, unfortunately, not new to Eagle Syndrome (with mine being predominantly venous type symptom-wise). So, please bear with me.
Long story short, after 4 or so years of “lighter” symptoms (and inaccurate diagnoses as to reasons for same) and about 1 year of of very intense/debilitating symptoms, finally received Eagle Syndrome lead/diagnosis. Had styloids removed October 2024 (right) and end of February 2025 (left). Definitely feel a lot better, especially compared to pre-surgery/after first removal (that was causing most intense symptoms as far as I could tell) but still have issues daily. For me, I don’t get “good days or bad days” but instead “good stretches” and “bad stretches” throughout the day, with those “bad stretches” mainly being later in the day.
Purpose of post is:
Has anyone else experienced this type of recovery and, if so,
Any recommendations on ways to get through them, physically and/or mentally?
Fun bonus to add to this: have two small children.
Lastly, to try to contribute as I reach out to the community for help, the following are those who helped me identify issues that were misdiagnosed and/or brushed off as being “in my head” (figuratively, of course, wish they had been a little more literal and looked just below my head and at my neck more thoroughly). May be useful to someone who is at the “lost for an explanation” stage and can get some leads and/or traction quicker than I did (and many others with our condition):
Dr. Amans at UCSF- He was first to identify bilateral internal jugular stenosis after I was told initial scans (that I pushed to have) “looked fine”. So, he knows what to look for in my opinion.
Dr. Pannell at UCSD- Once I had lead from Dr. Amans, was able to see Dr. Pannell, who ordered a battery of tests and concluded, per his report, I have severe bilateral jugular stenosis and discussed venous type of Eagle Syndrome.
Dr. Osborne of OHNI- Performed both styloidectomies; 3.25 cm on right (calcification of ligament and looked like it had barnacles on it) and 2 cm on left (although short, “abnormal” shape per doctor/thick and resembled a tiger shark tooth). Cannot sing his and his team’s praises any more; excellence at its finest.
Thank you for sharing your ES story so far, @ChurningTheLegs16. I’m glad you saw some some great doctors whose names have been mentioned here, & they were able to diagnose the causes of your symptoms along with Dr. Osborne who ultimately did what we know works best to resolve or reduce VES symptoms. Though Dr. Osborne doesn’t do IJV decompression per se, often just removing the styloids is enough for the IJVs to decompress naturally which it sounds like happened in your case.
It’s not uncommon to feel worse at the end of the day post op than when you first wake up in the morning. ES surgery takes a toll on the soft tissues w/in the neck as well as the skull base area from which the styloids are resected. In your case, your IJVs are working at re-regulating. The post op inflammation (which is like a protective cushion with which your body surrounds the surgically injured tissue) applies pressure to an area that was already irritated, so initially healing seems very slow as that “cushion” can take quite some time to gradually reabsorb. As the inflammation causes some pain to remain present, it is helpful in keeping us down so we can heal better/more quickly than if we were to jump back into our normal lives too soon.
The fact that you’re up & about all day & likely working & helping w/ childcare means you’re likely using your head, neck & shoulders a fair amount during the day. Your afternoon/evening fatigue/symptoms flares are your body telling you, you’ve done enough for the day & it’s time to rest. With time, that will gradually fade. I had a turning point w/ the fatigue about 2 mos post op w/ each surgery i.e. I began feeling like my old energetic self vs my post op tired self.
The answer to Q1 is obviously yes based on my previous paragraph, & the answer to Q2 is to take time to rest when you start to feel symptomatic or fatigued. Getting back to normal after ES surgery happens via baby steps not leaps & bounds which means you need to coddle yourself a bit & let your family (even the youngsters) help take care of you, or at least respect your need to rest periodically when you wouldn’t have normally. I’ve had children so I know this may be a tall order.
Made me
This is a problem MANY of our members have had with some even being referred to psychiatrists. It’s a sad situation for sure.
Thank you Isaiah! Yes, makes sense that improvement usually comes in small increments, rather than large leaps. Guess I was hopeful I’d be farther along 5 or so weeks after my second surgery. But, in the meantime, will try to listen to my body more and really appreciate the insight!
And, thanks for the comedy “shout out” . Still cannot believe how “close” doctors were all these years but how far they ultimately were from a diagnosis or next step perspective. And especially frustrating that I had to lobby for scans, only for them to initially be dismissed as “normal”.
Regardless, so glad I found this community and will really try to keep in mind that healing is slow here. However, I do have an angiogram/venogram scheduled for end of this month to check on jugular veins since that seems to be the main culprit for the most prominent symptoms.
Thank you for the info about the doctors! I’ve added them to our doctors list with a note that they can diagnose ES…You made me laugh too with your head comment, I’m glad that you’ve managed to retain a bit of a sense of humour!
5 weeks is still very early on in recovery, so that you are having some good spells is positive! I agree with @Isaiah_40_31 that looking after children probably doesn’t help; mine were older when I had my surgeries, but I was volunteering with young children, so didn’t do that for 4 weeks after surgery because of the lifting …not sure how old yours are, but there is so much physical care needed which maybe you’ve done without thinking; lifting in & out of high chairs, cots, car seats, push chairs etc, as well as housework, laundry etc, it will all add up through the day & it’s not surprising that you feel rougher in the evening! If you can still ice your neck at times that will help, & if you aren’t sleeping propped up a bit may well do too.
Hopefully your next scans will show good things! Take care of yourself
. Still cannot believe how “close” doctors were all these years but how far they ultimately were from a diagnosis or next step perspective. And especially frustrating that I had to lobby for scans, only for them to initially be dismissed as “normal”.