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
Thank you Jules! 7 weeks out from my second surgery and still going along slowly, but have periods where I feel quite good (at least comparatively). Unfortunately, those are eclipsed by periods where certain symptoms return and/or are noticeable. So, on the recovery rollercoaster but trying to stay as positive as possible (easier said than done, of course, with the past two or so days being a bit of a challenge physically and mentally).
@ChurningTheLegs16 - The good days do tend to roll into harder days that can last for a few days before you’ll start feeling good again. The upside is that as more time passes, the good days will become more plentiful & the less good days will become fewer. Good work striving for a positive mindset. That helps a lot with recovery.
Which battery of tests helped Dr Pannel. I am so disgusted at the lack of knowledge and the inability to see what is on the imaging
I had a neuroradiologist that was able to spot two key issues that were then ignored by surgeons but she made no mention of my calcified ligaments that one Dr said almost go to hyoid bone.
I have now asked for referrals to Nakaji and Constantino. I won’t feel safe until I get into their hands. God bless my primary care physician who has tried to help but there is only so much he can do . He is willing to order tests…even ordered a TCD but the hospital won’t do it on outpatient basis.
I guess I am fortunate in one respect. Brain bleeds and lacunar strokes do get attention
Per his report, my head/neck MRI and CTA showed severe bilateral internal jugular stenosis, along with “robust” collateral veins at the styloid level (which, per my research (I am not a medical professional) is indicative of quite significant jugular impingement). Also having a catheter angiogram/venogram performed in a couple of weeks to see how open the veins are following my styloidectomies, which apparently will also show internal jugular vein occlusion/how impeded they are, if they are.
Overall, based on my experience, I found that a neurointerventional radiologist is needed to really be able to spot and/or identify such issue. Nothing against normal radiologists, but because of the rarity of the condition and/or issue, the non-neurointerventional radiologists reviewing my scans missed the issue/claimed my scans “looked fine”. Even a neurologist said so. It was only until I reached out to UCSF’s Pulsatile Clinic via its “second opinion” program after others attempted to gaslight me into thinking it was all in my head/I was overexaggerating was I able to get the clues needed to land on a diagnosis (Dr. Amans, another neurointerventional radiologist, was the one who first spotted the bilateral jugular stenosis, albeit based on very minimal imaging, and, from there, had further imaging via Dr. Pannell since I had a medical report to build off of). I credit Dr. Amans and Dr. Pannell (along with Dr. Osborne, my surgeon) with saving my life.
PS: Jules/Isaiah_40_31- Thank you so much for the words of encouragement. You two are beyond amazing for what you do for this community/those struggling with this condition.
Don’t exactly recall but maybe $800 to $1k. Not cheap by any means. But invaluable in the end. Plus you have another doctor who does intake and helps you formulate questions for Dr.Amans. So there’s a lot of value and time spent so amount charged actually seems quite reasonable when broken down: basically, you get to ask Dr. Amans five questions about scans/symptoms then get a full blown written report. You then have a week to propose two follow up ones. They also triaged my review; think I submitted all scans by a Wednesday and Dr. Amans sent me the report that Saturday.
Would you mind sharing Dr Amans’ details please @ChurningTheLegs16 ? Getting scans re-read is something members ask about quite a bit so it’s handy to know of a skilled Neurointerventional radiologist!
My post right above yours has the information to get that second opinion with a clickable link.. It just is not titled as such .
My concern about this is my tinnitus doesn’t pulsate so I kind of don’t fit into their clinic.
I would be more interested in his opinion about the rest of it. I would also like to know if it all can be done without going there in terms of opinion, etc
I did see a remote second opinion is 900 dollars. For people with CHM sharing ministry.. I wonder if they pay for this or do they consider this telehealth.
I’ve also been referred to Dr. Amans, @JugularEagle, but am not planning to see him as my tinnitus is also not pulsatile. Unlike in your situation, I know what’s causing mine now from a recent CT which confirmed what showed up on a CT in 2022 so it seems like a moot point to make an appt w/ him.
So can only speak from my experience, but he was not just looking for cause of that but all the symptoms I had been experiencing. He’s a neuroradiologist and was basically looking for any abnormalities or issues in the head/neck area, not just those that specifically cause pulsating tinnitus.
Regardless, he’s not the only one who does second opinions. Can sign up for second opinion program and talk to intake coordinator who can then put you with the doctor who you think would be best; think the second opinion program not just limited to UCSF’s clinic but works with a multitude of different organizations who may have someone better suited for your needs. Again, from my understanding, the “second opinion” program is a third party company that then matches you with an appropriate clinic or specialist. I just chose Dr. Amans/UCSF in the first interest based on my symptoms and what he specializes in (that clinic looks at venous abnormalities, AVFs, etc.).
Isaiah- not sure what your symptoms are/what you are looking to have done but, if you can make an appointment with Dr Amans work financially, I think it may really be worthwhile. Seems like he’s seen so much that even if no pulsatile tinnitus, he can at least see if there’s anything else causing other symptoms.
I’m Sandys_Mom21 and I’ve been dealing with all kinds of symptoms many the same as what you have since 1980. Yes, that makes me old as dirt. So that’s probably why I hurt so bad all the time.
For that many years and all of the doctors and hospitals I’ve been to across our part of this country, you’d think I could have found at least one doctor who could try to help me. Some of them were from big teaching hospitals in Pittsburg PA. Mostly I was told there is nothing wrong.
Where I live now I found an ENT office and thought yea finally a place where they surely should know something. after seeing a different PA or CNP every visit and being told sorry there’s nothing wrong. I was scheduled for another visit. I told the scheduler emphatically that if I didn’t get scheduled with a doctor whom I could see every time I would go elsewhere. Scheduler said good luck. “we’re the only ones around here.”
So sorry I’ve gotten wordy. Now is the good part. A Dr. John Ingle started coming to our town from Rochester NY one week a month and I got scheduled with him. He didn’t care how long he stayed with me, he asked about my story. When I told him, He said don’t worry one bit we absolutely WILL get to the bottom of this and start you on the journey of healing. He diagnosed me and got me set up with my first Doctor at The Ohio State University Wexner Medical Center in Columbus Ohio. Had my first surgery April14th of this year. It’s been harder than I thought. I know I’m going to have more surgeries, but I am willing to deal with it. You will find who you need.
If you don’t mind I would like to pray for you and whatever you need in your journey. If you prefer that I don’t pray please let me know.
I am also going through the good and bad stretches too.
. 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”.
