1 day post-op with Hepworth

Hi everyone, I am one day post-op from my right styloidectomy and IJV decompression surgery with Hepworth. I thought I would fill you all in on how it went and how I am feeling, as well as some key takeaways from this whole experience:

Post-surgical updates:

:sparkles:hyper mobile Ehlers Danlos Syndrome
:sparkles:Eagles Syndrome (what the surgery was aiming to treat
:sparkles: PFO (hole in my heart between my left and right ventricle
He also saw evidence of past Lyme disease.

Now for what happened, what he saw, and what’s next:
We expected my right styloid to be elongated based on MRI’s, CT scans, Jugular vein ultra sound, etc. When he got in there, however, he saw that my styloid process was not only incredible long, it was also really freakin thick, and here’s the kicker, CURVED.

So my styloid process was not only impinging my vagus nerve and jugular vein, it was also compressing my ninth and tenth cranial nerves, which affect a sh*t ton of autonomic things we don’t even think about , including heart rate and the like, nausea + :face_vomiting: and so much more. We are really hoping that some of my symptoms are attributed to this and once fully healed, my POTS symptoms and migraine symptoms will lessen.

Unfortunately we can’t expect a miracle here as Ehlers Danlos syndrome is incurable and walks hand in hand with POTS and migraines, so I anticipate being left with some of those symptoms, just crossing my fingers and toes that it will be less intense and more manageable/receptive to future treatments.

He had to remove the curled styloid - something in all his years of doing this he’s never seen before. He then had to (literally) detangle my jugular vein, vagus nerve and ninth and tenth cranial nerves. Not sure if they had to balloon any of those veins in order to open them and resume blood flow, but I’ll find out during my first post-op when I get my stitches removed.

He also said that he saw clusters of lymph nodes suggesting former Lyme disease. In addition to having that checked out, an appt in a YEAR with the denver center for Ehlers Danlos syndrome, he also wants me to get my PFO reevaluated.

Some key takeaways from my experience in whole:

Go into this with an open mind and ignore, as best you can, any voice (yours or someone else’s) telling you it isn’t a good idea. For example, my neurologist insisted that some chiropractic treatments would fix me up (he got some $ from the chiro he tried to send me to and it was more than evident that is where that came from). Other docs told me not to remove anything I didn’t need to (meaning the styloid process). They were all doctors who weren’t helping me at all, nor were they really even trying to help.

Don’t let anyone gaslight you. Easier said than done, trust me - no one gets it like I do. The more abstract the diagnosis, and the more invisible your symptoms are, the less people want to believe or help you.

And if you mean to say, “don’t let anyone gaslight you,” for the love of all that is pure and holy: say that. Never, ever tell someone to “gird their loins.” Especially not to a Jewish girl…it does far more harm than good, ffs.

I am proud of each of you who is stuck in this wretched illness and medical journey. We are freakin’ warriors. This shit is not for the faint of heart, and I know none of us ever asked for it, but are still walking through fire with grace - even if it doesn’t feel so graceful at the time.

B’ahavah (with love),
Small girl big mountains


Well said @smallgirlbigmoutains. I wish you a rapid recovery and utter disappearance of your symptoms.


Thank you SO much, @KoolDude!!

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It’s always interesting to read people’s stories about what their surgeons find once they can actually see what’s going on in their patients’ necks. Your “curly” styloid definitely sounds like it was a challenge to deal with since it was so tangled up in your vagus (10th cranial nerve) & glossopharyngeal (9th cranial nerve) nerves. The vagus does play a huge role in our bodies & has control of many functions that range from throat/vocal cords to heart/lungs to gastrointestinal tract to bladder/bowels. The glossopharyngeal also has it’s share of responsibilities in the neck, mouth & facial areas & both are commonly affected by an elongated styloid/stylohyoid ligament. I hope these two nerves in particular will completely heal so the symptoms they cause disappear.

I’m sorry for your EDS, but having this surgery may help some of your symptoms from that to lighten up. It’s good that Lyme is a thing of the past for you & that there was only evidence that you’d had it.

I agree w/ @KoolDude - You spoke quite eloquently regarding patient self-advocacy. I’m glad for what you learned on your journey that will help you in the future & help our members now. Thank you for sharing your wisdom & insight with us!

I’ll be praying for your recovery to go smoothly & quickly so you can get back to doing your business with gusto! Sending you a healing hug. :hugs: :two_hearts:


Wow, so pleased you were able to have the strength & wisdom to ignore those doctors who put you off, & to have been able to see a skilled surgeon! With time you should see the benefit of getting that curly spike out, wishing you a speedy recovery and resolution of your symptoms, prayers and hugs for you :pray: :hugs:


Was this done out patient?
I agree, sometimes you are sooo tired of being sick that taking a “lift all boats” approach feels like the way to go (treat everything). At least the chiro I saw had heard of ES but he though just getting chiro would fix eagles and that eagles isn’t the styloids growing (he said they don’t do that) but it’s just from the neck vertebrae collapsing. Hmm…you hear all kinds of things.
Yours sounds like one for the medical literature. Unwrapping so many things.
Dr. Hepworth is having a hard time telling which side to do on me. Rt looks worse on the scans but the left is the one that is causing more pain (neck, ear, sinus, Eustachian tube). He said he wouldn’t do both at the same time since I wouldn’t be able to eat. I’m asking if I could still drink (smoothies, liquid diet). If so, doing that for how long? It is hard getting answers from his office though. I might be up for both and the extra pain just to get them both over with. He thought that sometimes when you fix one side it lightens the load on the other side and doing the other side is only needed 10-20% of the time.
Hope you keep posting and give recovery updates. Wishing you the best.


@juliezuber - As much as I respect Dr. Hepworth, I have to disagree w/ his assessment that only 10-20% of patients w/ bilateral ES need their second styloid removed. I expect that’s based on his experience, but our experience on this forum is quite different w/ the majority of those w/ bilateral ES needing the second side removed eventually,& in many cases, ASAP, after the first one is removed. ASAP in the medical world = 3 - 6 months after the first surgery as it’s best to give the body time to heal for a bit before jumping into a second similar surgery.

We aren’t just sure why this happens but have speculated that having one side removed leaves an imbalance in the neck which further stresses the remaining elongated styloid/calcified s-h ligament & the soft tissues they’re affecting. The normal course is that a bilateral patient feels pretty good for a month or so after the first styloid is removed then the symptoms from the second side, which can also affect nerves on the contralateral side (this is called cross-over symptoms), begin to flare up & pain gradually increases until it’s necessary to have the second side done for symptoms relief. In my case based on symptoms alone, I was ready for my second styloidectomy by 2 mos post op, but at that time, my surgeon wouldn’t do the second side any sooner than 6 mos after the first one. He has since changed to doing them 3 mos apart.

Though Dr. Hepworth only gave not being able to eat as his reason for not doing bilateral surgery, there’s also the issue of throat swelling which occurs post op, & which in bilateral cases could be extreme enough to make breathing difficult. That said, none of our members who’ve had bilateral surgery done by Dr. Hackman have noted that was a problem. Besides all that, I don’t believe Dr. Hepworth has ever done a bilateral styloidectomy. Most doctors don’t because of the greater risk of post op complications.


Thank you! I appreciate all the details. I feel like it would be better to do bilateral and get it over with. I get the post op issues but it also seems dangerous to not address them both as soon as possible.

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I had the same exact desire & begged my surgeon to please do both at once. He chose to do the one that seemed less symptomatic to me because he didn’t like the angle it had grown & how thick it was. I advocated hard to change that, but he was determined. In the end, I’m not sure it really mattered as it did turn out to be causing some of my more distressing symptoms other than pain.

Once Dr. Hepworth has one of your IJVs open, your situation will be much less dire than it feels right now. Nerves, in spite of the pain/other symptoms they cause, are pretty hardy & tend to recover well even though the process can be quite slow.


Mine was done outpatient. The only reason you’d need to stay according to Hep, who I trust, is if oxygen levels were unsteady post surgery. Mine were fine and I just wanted to get the hell out of there. I heard the same ridiculous info from my chiro re: eagle. They think very highly of themselves, to put it politely.

I agree with pretty much all that you said above, actually. Including that his office is hard to get answers from. I felt, and in some ways still do feel a little in the dark of some things. Part of it being that there’s so much he doesn’t know until he’s in there, and then you are a useless puddle of pathetic, post-op haha. Taking it hour by hour, in a decent amount of pain but decided to go off the pain meds as the side effects are more intolerable to me than the pain. Admittedly, it’s my first few hours after making that decision, so I will let you know if I am able to stick to it. Trying to be patient with myself, but just wanting to feel human again haha.

In any case, I can’t tell you how comfortable Hep made me and my parents feel. He is compassionate, highly skilled and warm. Frankly he’s the only person on the planet I want treating me, even if his office staff makes you question your sanity. He’s clearly well respected in the field and the entire surgical staff backed that up. I really hope you get the help you need and if anything, that I am able to provide you some comfort that you are in the right hands.


@smallgirlbigmoutains - ice, ice, ice - 15 min on & 45 min off. Protect your skin w/ a thin towel between skin & icepack. Sleep & rest w/ head elevation of 30º (ish) as both ice & head elevation will help keep swelling down. Remember that days 3-5 post op are when swelling & pain tend to peak. If you can’t tolerate Rx pain meds side effects but are ok w/ acetaminophen, Extra Strength Tylenol has been a go to for many of our members who quit the Rx meds early. Stay away from ibuprofen for the first 10 days or so as it’s a blood thinner & can cause the incision to leak.

I hope this helps!


As for the 3-6 day pain period, is surgery day Day 0 or Day 1? So my surgery was Aug 30, was yesterday the 3 day mark, or is today? I would say yesterday the dizziness and nausea peaked and I was in considerable pain, but I am feeling the pain creep up more already. I have had a really hard time getting any sleep the last few days/nights - i just can’t get comfortable, and then god forbid, stay comfortable. It’s 3:30am now and I am wide awake, but got a few hours.

Hep/Hospital said to stay away from OTC pain meds as it can be a landmine figuring out what is safe and truthfully right now none of them are because it is such a delicate surgery (so basically, don’t f*** with it was the filtered-out message).

Lastly, does Hep seem to take pictures of these little f****** (the styloids)? I forgot to ask him to ahead of time but considering mine was so mangled I am really hoping he took a photo, or even just takes them for hospital records? :sweat_smile:

Sleep will be elusive for the first 1-2 weeks due to pain & the unusual sleeping position which for me was nearly sitting up plus having to lie in practically the same position all night. The pain meds did really help me at night though & I set an alarm to wake me up when my early morning (2-3 am dose) was due. I was also given a 10-day course of Prednisone which was extremely helpful w/ reducing throat swelling. If you can’t/don’t choose to take your Rx pain med, you can call Dr. H & ask which OCT alternative would be acceptable.

Regarding the post op day count, I considered 24 hrs post op as 1 day which for you would fall on 8/31 & 24 hrs after that day 2 (9/1) & so on thus today would be day 3. I cut back my pain meds on day 3 & spent days 4-5 in our recliner in agony as I tried to play catch up w/ the pain meds. That is not everyone’s experience, however. Recently a number of our members haven’t had the tough first week post op that I had. I’m not sure if that’s due to better operative technique (my first surgery was 9 yrs ago), or easier surgeries (my glossopharyngeal nerve {CN 9} was wrapped around my styloid & had to be unwrapped which left half of my tongue temporarily paralyzed & nearly doubled the expected length of surgery so perhaps that extra time in the OR made my first week more difficult). You had a similar experience, but recovery seems vary with each person.


Thank you for this info. Kind of feels like my first week so far. My surgery wasn’t much longer than expected, but was definitely more convoluted. He didn’t expect my styloid to look like a freakin J hook, nor did he expect it to be as thick as it was haha, and apparently my ninth and tenth cranial nerves were also wrapped tightly around it in addition to jugular (originally he said jugular and vagus, and then also ninth and tenth cranial nerves but i think ‘vagus and CN10’ is redundant? Can you confirm?)

Feeling the pain a lot more today. Thank god for CU Buffs football and Philadelphia Phillies later today! Surgery just in time to sit on my butt and watch the best season of sports! My family and I are die hard Philadelphia Eagles fans, so my parents and I wore our eagles gear to eagles syndrome surgery. Hep loved it haha


Thank you for the update
Wishing you all the best and a healing recovery
What great things you have said about dr Hep and your experience with him
It sure helps me feel at ease with my upcoming procedure
I am so glad to hear that dr Hep was able to address and untangle those precious nerves and vein.
you were able to make the right decision for you regardless of what others have said.
Your words and experience are inspiring to hear.
Sending love aloha and positive energy your way @smallgirlbigmoutains :grinning::pray:


I wonder why clusters of lymph nodes would be past Lyme disease? Does he have knowledge of Lyme?


There are discernible signs that Lyme Disease leaves in its wake, & a lymph node cluster in the neck (body’s response to doing battle w/ the nasty bacteria that causes it) is one of those. I don’t know at what level Dr. Hepworth is familiar w/ Lyme Disease, but he does recognize familiar signs that it has existed or potentially exists.

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Great pictures, @smallgirlbigmoutains! Thank you for sharing. I’m glad you have worthy sports distractions to help you get through the next few days. It’s great that your parents are so supportive. Family is the BEST at times like these!


Thinking of you & take care of yourself, hope you can balance pain relief vs lack of side effects from meds…:hugs::pray:


Thanks. I will ask him and my Lyme Dr. about this. Lymph nodes are literally everywhere. Interesting……

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