I have posted previously about issues. I’m having, but I received no comments or response from anyone. I feel like I’m in this alone. I was trying to ask if anyone had similar symptoms following a bilateral styloidectomy I was diagnosed with eagles syndrome in 2021 had a styloidectomy through my mouth on the right side. Then, New symptoms arose, and I had a bilateral styloidectomy through my neck due to issues on the left side as well in October 2024. Since that surgery, I have severe pain in my neck, shooting pains as well that go through my neck and pain in my throat. My entire mandible is numb. I’m having severe headaches, and dizziness that causes extreme disorientation when trying to walk, bend over or even turn my head. Is this something anyone else is experiencing?
It’s easy to feel alone when no one responds. I think there’s a couple of reasons, but not because no one cares to hear about what you’re going through. Did you only have your styloids removed, or did you also have a C1 shave?
I don’t have the medical terminology that some others do, but I wonder if your styloid was having an impact on your IJV. Compression/decompression could be explaining some of your symptoms. They sound aligned with those who have decompression surgery. Not everyone has to have a C1 shave to achieve decompression, some people only need to have their styloids removed. It can take several months for the jugulars to re-learn how to regulate, and it’s not uncommon to have outflow back up or dysfunction after they’ve been compressed for so long. That’s what we’re currently exploring at the moment. Hoping for an ultrasound of the IJVs and getting a referral to a vascular specialist.
My husband had the full Happy Meal (styloids, C1 and digastric muscle removal) and at ~5 months post op he’s experiencing much of what you are. His left side is completely numb/tingling, he has first-bite on the left side, he still gets intermittent pain in his throat and the strangling feeling (albiet different, and maybe now muscle related). He’s now developed daily headaches and dizziness associated with standing and movement. You’re not alone.
There are quite a few threads where people talk about their post op struggles. I recently hyjacked this one: My problems with ES, C1 and SCM are causing compression on IJV - #45 by Val7426
This one also has recent posts and people have discussed their diffculties in other ways: Having surgery without being 100% sure
I wish you much luck finding both answers and relief.
Robinevalon, try not to feel alone. Im still having symptoms after my surgery 2 weeks ago. I dont understand most of this. I wish i could help you. Im not medically inclined but do have compassion and love for people who are suffering. I’ve done my share of being frustrated, crying, having fear, and not knowing what to do next or what doctors to go to next. Isaiah_40_31 and Jules have been with this community much longer than I. I know I can pray for people who need healing and care from whatever higher power they may believe or trust in. I have a husband who also suffers 
from a very rare disease and we walk our jouney👩🏼🤝👨🏻together. We also have our rough times. Two loving people can still have rough times but we always work our way back so we can rely on sharing our story with others in such a way that perhaps it will help that person feel strength and healing. Blessings and 
to you. Trust in your higher power , continue to seek out your best choice in doctors and always keep coming back to our community. My prayers will continue for you.
@Robinevalon - I searched for your previous posts & the only other one that came up was this one which did receive responses:
If you posted other times, the posts must have somehow not ended up on our forum. I’m sorry you felt neglected or perhaps missed the replies to the post I linked above.
It sounds to me like your symptoms are coming from vascular compression. We’ve had other members who had bilateral styloidectomies perhaps not knowing they also had internal jugular vein (IJV) compression & symptoms continued & got worse post op because the IJV(s) didn’t decompress from the styloidectomies alone. Very often, the transverse process(es) of C1 cause more of the compression than the styloids do so the C1 vertebra needs to be “shaved” back somewhat to provide more room for the IJV(s) to open fully.
Have you had a follow-up CT scan with contrast to see if there’s anything else visible going on in your neck? If not, that will likely be necessary to see the condition of your IJVs. Dr. Cognetti in Philadelphia, PA, or Dr. Costantino in White Plains, NY, are the two doctors closest to you who specialize in IJV decompressions with or without styloidectomies. You could try following up with one or both of them.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. David M Cognetti MD | Jefferson Health
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Hi, I’m sorry to hear you are having continued symptoms that feel unexplained. I had surgery unilaterally in Nov 2024 and am also having the same issues. I’ve been in a lot of pain since surgery and over the last 5 months tried to focus my recovery energy of working on my posture starting with the lower half of my body (avoiding anything that requires positioning my neck in a certain way). I have also worked on releasing as many muscles around my neck/skull base/shoulders/clavicle etc, often during the night when I would wake in so much pain.
At times I feel a bit better, but most of the time, I can tell the tension in and around the surgery is still causing a lot of compression. I struggle doing anything that requires me to turn my head in small increments regularly such as going to the mall, shopping, which makes me feel like I am about to fall over or pass out. I also dislike eating at the dining table as when I look down I get blurred vision and feel disorientated.
I’ve come to accept over the past 5 months that I am no where near ‘recovered’ yet - though it has taken me a while to feel comfortable with the idea that this may take years.
I did have IJV compression so it could be that in the future I need to address the C1 aspect of compression but considering I am also getting a lot of nerve type symptoms also doing certain movements, I feel that the generally swelling in the area is the main problem right now. My surgeon has said that the swelling and internal stitches can tether things which causes issues when moving the head and neck and this makes sense to me.
I hope some of this might help you to feel less alone in this journey.
I recently had a very good consult with Dr. Nakaji in Scottsdale Arizona. Maybe give his office a call. They are very responsive compared to others I’ve had consults with. I’m having surgery in May and am very nervous myself since I am dealing with IJV compression at C1 and the Styloid. He has been at it with this illness for a long time and really seems to know his stuff.
I think a couple of the posts you commented on more recently were really old blog posts which we’re not always notified of, so that could be why they weren’t seen by anyone, sorry we missed you when you needed some support, we do try to keep up with posts!
I’m sorry that your surgery hasn’t helped you, I think that the others have given you good advice, it does sound as if some vascular testing is needed to see what’s happening, it could be that there’s still some compression on your IJVs. If you had a spell when things improved for a bit after surgery, it could otherwise be that there’s some scar tissue formed which is causing issues; there have been some discussions about cold laser therapy which can help with scar tissue.
We’ve also had some discussions about more detailed MRI scans for nerve compressions, Ciss or FIESTA MRIs can see more details, as it sounds as if some nerves are still being affected. Which nerve pain medications have you tried?
Thinking of you and I hope that you’re perhaps able to see a doctor who is aware of vascular issues…
I saw your post, however, I didn’t respond because I haven’t had my surgery and felt what could I possibly offer to be helpful. I was diagnosed about a year ago. My styloids are huge and on both sides and I’m trying to find a surgeon who is good, near me and willing to take both insurances I have. When I see you and others having so many complications it terrifies me to be honest. My styloids are so huge they appear to be resting on both sides of my C2 and it’s possible I will need it shaved down. Even the recovery afterwards of how you need to sleep was never shared with me except on line. I’m sorry you are going through so many complications and feeling alone. I didn’t know they could go through your mouth to remove the styloid. Anyone I’ve talked to they cut open both sides of your face. Are you able to get any feedback from your surgeon about your issues?
@Torrine - have you contacted the surgeon in your state who’s on our Doctors List?
•Dr Donald Endres, ENT/ Head & Neck Surgeon. Meet The Team | ENT Specialists of Alaska
If so, did he feel like he could do your surgery? We’ve had many members over the years who’ve had good outcomes from ES surgeries. It’s just that once people begin feeling good, they have no reason to continue here on this forum so they leave, thus the posts you read are mostly from people who are still struggling which can give a negative bent toward having surgery.
Recovery from surgery is slow, & it can take a number of months & sometimes up to a year before symptoms really disappear. Fatigue from surgery can last a couple of months post op, but that doesn’t mean you’re bedridden for that long, just that your energy level may be lower than normal. Usually after the first week or two, most people start easing back into their normal routines w/ the key word there being “easing” not jumping back in at a break neck pace.
Your styloid situation sounds AWFUL & the sooner you’re able to get them shortened, the sooner you’ll be on your way to recovery. I hope you’re able to see someone soon who is willing & able to help you. If you’re able to travel, there are other doctors to whom we can refer you. If you’ve been diagnosed with internal jugular vein compression, then there are some specific doctors to whom we would refer you in the US.
Please let us know how we can help you make progress toward finding the right surgeon for you.
Thank you for reaching out. My doctor up here wasn’t confident in using Dr. Endres since he’s only done one and so much can go wrong. Doesn’t mean he’s not a great ENT, which I know he is. It’s super frustrating. I’ve found a couple that I’d like to see, but they won’t take insurance or won’t take out of state insurance. I haven’t communicated with the NC surgeon just yet but a referral was sent over and I need to send them my records and write a letter to them per my doctor. I’m hoping to get that done this week.
Either way, I’m still terrified I hate to say. The way my symptoms have progressed and escalated this past year has been alarming to say the least. I just want it to go smoothly, but I know enough to know anything can happen/go wrong.
Thank you again!
@Torrine - Dr. Endres has done more than one ES surgery. We have a member from your state who had bilateral ES & she had one surgery for each side & he did both of them so he’s done at least 2 
. Her outcome was very good, but I also understand you’re wanting to see a surgeon who is more experienced w/ ES surgeries. It’s what we encourage our members to do.
Do you mind sharing what symptoms led to your ES diagnosis?
@Isaiah_40_31 has given you good answers, I’d just like to add about the 2 methods of surgery as you mentioned that; intra-oral (through the mouth) surgery can be successful, but research has shown it’s not the best method for styloid removal, as the surgeons don’t have such good visibility so can’t see nerves & blood vessels as well, they generally can’t shorten the styloids as close to the skull base, which would give the best outcome, infections are more likely, and it’s often a more painful surgery to recover from. So external/ transcervical surgery gives the doctor better visibility & hopefully enables then to shorten the styloids more. Usually the doctors will put the incision in a natural crease of your neck, occasionally behind the ear or in front of the ear, depending on their technique.
I hope you’re able to find a good doctor who takes your insurance!
Thank you for further information! Ya when I read they went through her mouth…that was the first I had heard/read about that. Dr. Osborne said he likes to follow a crease or wrinkle down the side of your face by your ear, only I don’t have one. I’ll look like I went and got a “bad” facelift as there won’t be a change! Hahaha
I think when I asked this group almost a year ago Dr. Endres had only done one surgery by then, but I get it! My doctor just wants me to go to someone with a bit more experience with this surgery and I’m rather on board with that. BUT if I can’t find anyone that meets his criteria and before I lose my secondary (and actually takes insurance) insurance…I might just have to go to him and pray for a good outcome. I don’t know how most of these surgeons expect people to afford this. It’s crazy!
@Torrine, Here are links to posts made by the gal for whom Dr. Endres did ES surgeries. She had her surgeries w/ him in 2018 & 2021:
I am just about to faint looking at that picture of her with that drain . I can’t deal with that set up . More power to her for dealing with it while losing loved ones . They need to leave me in the hospital if they put that thing on me
@JugularEagle - Not all doctors put in a drain & not all make an incision as large as hers, however, incision length can have something to do w/ what the surgeon finds when (s)he can visualize the inside of the neck. I believe most try to make the incision only as long as is necessary to access the styloid & any nerves or vascular tissues that are involved. In most cases incision length is pretty minimal.
Usually you’re kept in if you have a drain…I had one, although not as big as that, it was only a thin tube!
I will also have bilateral ES. I’ve had swelling in my face for about 7-8 years, unknown pain, cellulitis under the eye, which then eventually I got shingles in the face - which started in my 40’s, much too young. It seems the shingles is triggered by the affects of the ES too. I wasn’t finally diagnosed until about a year ago by an awesome pain doctor, he caught it on the images he took. I would love to stay local, but I have to admit I’m fearful from all that I’m finding, especially if it doesn’t go as planned and the person isn’t as experienced.
This makes a lot of sense. It’s more important for you to feel confident in & comfortable with the doctor you choose for ES surgery. I hope you’re able to choose whom you’d like to see, soon so you can move forward with surgery.
I know I need the surgery soon since my symptoms are worsening. I’ve recently been seriously considering using the local surgeon and hoping for the best. Pressure on my throat if you will, causing me to gag and almost throw up, then it turns into a coughing fit where I can’t catch my breathe. My right side is longer and angled differently, yet the majority of my pain and swelling is on the left side of my face. Anyone else dealt with this?