I was scheduled for VES surgery with Dr Costantino on December 22nd and my insurance blocked me from having it because he is not in network. They say that there are two surgeons in network that are capable of doing the surgery. I have already seen one who does not recognize vascular eagle syndrome and thinks the surgery to remove the styloids is no big deal. (Scary) I have appealed and I’ve been denied again. Before I do my last appeal I was hoping to get some stories on your surgeon- what was involved in your surgery? how many surgeons were in the room working with you? Did they they have complications once you are opened or did they find things that they weren’t expecting that didn’t show up on imaging? C1 shave? Did they do nerve monitoring, did they use drains did you have pain medicines. Were your surgeons experience in vascular - Venous outflow obstruction? How long was your recovery and were there any complications? Any help and insight would be appreciated since I am trying to plead my case.
I’m UK, so I don’t know if my experience is at all helpful, but my surgeon had requested a CT with contrast before surgery to look for IJV compression, he is very experienced with this. There was no C1 compression . I didn’t have a vascular surgeon in theatre, but he does work with a vascular surgeon, & I think they might have discussed my case in a team meeting. I didn’t have any complications or anything unexpected. I did have nerve monitoring (that should really be a must for this sort of surgery I would think!) I had a drain in overnight, was sent home with codeine although I didn’t need it.
Have you got an appt with the 2nd surgeon they wanted you to see, I’m sorry, I can’t remember?
I hope that you get somewhere with your appeal 
Of course any info is helpful. It’s a guide for me on different approaches surgeons take. I appreciate your story. It shows that nerve monitoring and drains is the common practice. I do not have an appointment yet, though he did agree to review my imaging before I have to go to NYC. His office says they should get in touch in a few days.
I didn’t have VOO when I had my first surgery but my surgeon found my glossopharyngeal nerve was wrapped around my styloid & needed to be unwrapped so he could shorten the styloid. This caused half of my tongue to be paralyzed for 6-9 mos which made speaking clearly & eating normally somewhat challenging. I also ended up w/ a pretty gnarly case of First Bite Syndrome which I still have but it’s drastically reduced from what it was at onset.
I had some IH symptoms prior to my second surgery but they went away after my styloid was gone. I didn’t have a scan prior to surgery to see if I had vascular compression.
I think it makes sense to have a vascular surgeon there to make sure the veins are functioning. Removing the styloid doesn’t always do it. I needed the jugular vein to be ballooned. They went up my groin (like they might do for a heart patient).
There were these 3 drs:
- ENT
- Vascular
- Anesthesia
There was equipment and people (or a person?)just for monitoring nerves. It was a specially equipped surgery room for it. I had monitors placed in my mouth and around my head.
Jugular ultra sound and MRI were done pre surgery. It is tricky to get the jugular ultra sound done right. There are only a few places my doctor sends people. One place, his office trained them. So, it is tricky to get the issues to even show up on testing.
Right and left sides both showed styloids blocking jugular veins.
It appeared that the rt side was more blocked but I insisted on doing the left since that is where I had immense pain.
They went in through an incision on my neck (about 3.5" long when it was measured 1 week post op, so things were still very swollen).
Found on left side during surgery:
Left Jugular was blocked in 3 places (more than the testing showed). Up by the styloid and 2 places by the hyoid bone and thyroid.
The immense pain I had from behind the left ear down the neck was from a smaller vein that was bloated (turned into a varicose vein), trying to compensate for the blocked jugular vein.
The vascular surgeon had to balloon at least one of the places to get the vein to open again.
There was scar tissue around the jugular vein keeping it from inflating. The scarring could have been from: trauma, infection (from sinuses or lymph system), neck strain,?? who knows. The ENT removed as much scar tissue as he could without injuring the cranial nerves.
This is delicate surgery.
From the surgery report re removing the styloid:
"The styloid was identified and skeletonized and eventually removed using ultrasonic dissector through an infratemporal fossa approach, which involved retracting the digastric posterior belly superolaterally, identifying the 9th, 10th, 11th and 12th nerves preserving them and untangling them from the styloid orgin and then removal with the ultrasonic scalpel of the styloid itself. Vascular Surgery service then performed venous assessment by IVUS pressure gradient and fluoroscopy and revealed that there were constrictions of the jugular vein, both high and low. A ballooning was performed to expand the inferior aspect of the jugular vein, which improved visual picture and pressure gradient across it by approximately 3 times."
The testing before doesn’t show everything. Having the right doctors and teams in the room makes sense.
Take aways:
it took a surgery room equipped for nerve monitoring.
2 surgeons (ENT and Vascular)
Surprise! Jugular vein was blocked in not 1 but 3 places. Plus, there was scar tissue to remove.
Styloid was wrapped around and pushing on nerves, vein,… (delicate to unravel).
There were calcified ligaments to remove.
I didn’t have a drain. I went home that same day. I had a large supply of pain meds and ambien for sleep.
I was told: intense recovery for 2 weeks, at least 6 -12 weeks to really let things calm down enough to evaluate (blood flow, chewing, swallowing, taste, voice/singing, neck rotation,…).
I am 5 weeks out.
Hope that helps explain to the insurance company all that might be involved.
Thanks for helping out @juliezuber , I’m sure that’s really good info for @lilwider !
I’m glad your surgeon is realistic about recovery time! Too many give a “pat on the back” & say you’ll be fine in 2 weeks. HAH!! They need to have this surgery to see how they feel two weeks post op!!
Oh wow thank you for this detailed account. This is just the information I was looking for. You are a great help!. Hoping you are doing better, how are your symptoms now?
Definitely a help!
I’m sorry that you had to go through a rough recovery - I know you have mentioned first bite a few times and I have written down your tips on getting through it. How long has it been since your second surgery? Have your symptoms gone?
Absolutely. People recover very differently. Some can go around as if nothing had happened three-four days post op. Some need at least a few months for basic recovery.
I got covid about 5 days ago ( 4.5 weeks post op)! Yes, you can laugh 
. It’s been that kind of year. I feel like my life is a cartoon, just waiting for the anvil to fall on me (beep, beep). I am so glad it wasn’t right after surgery, it would have been hard to cough without splitting my neck back open.
I’m doing ok though. It’s been interesting, Covid brought back all my surgery pain. It felt like covid moved around my body looking for weak, unhealed spots and flared them up again. It showed me how things are delicate and still trying to heal.
Today seems better and things are getting back on track to just being surgery recovery. I’m taking C, D/K2, zinc (plus other minerals), NAC, liver support,… and avoiding inflammatory foods like: sugar, dairy, alcohol, gluten. Really trying to help the old body out. I was taking lots of walks. I’ll try to get back to that now that my Covid seems (cross fingers) to be getting better. I’m going to a marriage break up (there’s the anvil : ) and walking has been like therapy.
Right after surgery:
- pain on left neck was gone (the varicose vein didn’t have to work as hard). So happy about that!
Now (5 weeks out):
- tinnitus has been the same or worse. It’s just moved, primarily, from the surgery side to the other side. It keeps me up.
- left ear - hearing is clearer. Still get bouts of itching and pain but it’s much less.
- red eyes - seem clearer
- Still get random zaps under the chin but they are less and less.
- anxiety - I feel calmer, thinking a little clearer?
- sinuses - seem clearer, crisper.
- TMJ and neck crunch - went away after surgery but came back 2.5 weeks later. Dr. says to give it til 6-12 weeks to really tell.
I’ll get evaluated (another jugular ultra sound, assess symptoms) after 12 weeks to see if surgery is needed on the right side. I hope he’ll do the other side. It looked worse than the left pre surgery and I can’t imagine it’s all straightened out now. I think the strain of styloids pressing on things causes the neck vertebrae to get out of wack (just my opinion) and I would hate to continue causing damage there. Plus I think it would help the tinnitus (if it doesn’t go away by then).
You can go on youtube and type in OHNI eagles syndrome. Dr. Osborne in CA has a few docuseries and actually shows the surgery. When you see them after surgery, it really is same day and 5 days post op. My husband is scheduled for surgery there on january 10th.
Oh that is too bad, I’m sorry you got covid. Feel better
It’s really good to hear all that was involved in your surgery. It must have been with Hepworth as I haven’t heard of another surgeon who sends people home the same day for VES. Had you had a catheter angio.venogram as part of your pre-workup? I’m curious as there weren’t significant compressions lower down when one was done on me which surprised me given my severe whiplashes and mid-lower neck pain…
I can’t even imagine being sick on top of recovery, I’m glad you’re feeling better from covid. I always wondered if the styloids had anything to do with you upper cervical being out.? I’m hoping that you get good news on your 12 week follow up. I know the anticipation to feel better must be exhausting and exciting at the same time. But it seems you are in the way!
Yes, my surgery was with Hepworth.
For pre-workup…I didn’t have a catheter angio venogram.
I had MRI and Jugular Ultrasound. Hepworth has 2 places he uses for it (he trains them and is particular about how it’s done).
Yes, I think they are studying the cranial instability connection to Eagles (chicken or the egg). I never thought I had any neck issues until all the Eagles stuff happened. I don’t think I could have chiropractor-ed my way out of vertebrae issues with all the ES stuff going on (calcified ligaments, a long styloid and a varicose vein (trying to make up for a blocked jugular vein)
19 days since Covid started.
It hit me at about the 4-4.5 week point in my surgery recovery. Luckily I was that far along and that I didn’t have much coughing (that would be tough on the neck incision site).
I tested Covid negative today and feel better!
I had lots of nausea, dizziness and the left ear feeling like it had fluid dripping into it again. That is similar to what I had pre surgery. Weird how Covid flared it up again (must be from swelling?).
Hepworth just did blood work: Complete Metabolic panel, hormones (FSH, LH, testosterone, thyroid, progesterone, prolactin, DHEA, Estradiol, IGF-1, Growth hormone, and Sex Hormone Binding Glob) and urine cortisol.
He wouldn’t prescribe anything, but would direct you to someone else if something looked off. I appreciate his thoroughness. I’ve had so many sinus infections and with all the head pressure I guess the pituitary can be affected. My Testosterone was about 0 (bad, even for a woman). I think I’ll take DHEA and Pregnenolone until I see my GP later.
Oh wow! I think any type of infection, virus, injury can cause inflammation on top of surgery. No matter the location would affect your neck, creating more inflammation, which would set you back from healing. Like everyone with the experience who has gone through this had said I guess we have to be patient with our healing and it could take up to a year. I feel it will be worth the sacrifice in order to get you life back. It’s wonderful Dr.H looks so far outside the box! I have read many stories like yours that he has found many issues other than eagles. I work with a naturopath and keeps an eye on my levels though there are things that I will have to stop taking when surgery approaches. The dhea make a difference . You’re very fortunate. I’m hoping this storm clears for you soon.
Glad that you’re feeling better from Covid & can get on with healing now! I agree with @lilwider that any infection or virus etc can create inflammation & as you’re still healing it seems reasonable to presume that it will make the surgery area worse & set off nerve irritation symptoms again…