I’ve been off the forum for quite a while. Re-posting this for some support and encouragement, which I know all of us dealing with Eagle’s need.
Had my RIGHT styloidectomy and R tonsillectomy (intra-oral approach) in February of 2024. My ENT surgeon here in the Seattle area was pretty unfamiliar with Eagle’s and mine was the first intra-oral approach he had done. I was excited for that surgery but unfortunately it has not alleviated my symptoms, and he only removed a small portion (5mm) of my styloid at that time. It’s been a frustrating 2 years living with this, working, trying to act as normal as possible. I also have spine issues and a cervical fusion at C5-7 (in 2017) so it’s been hard to pin down doctors on what they think they can do for me.
I have been working very hard this past 8 months or so. I have a new care team on board, and they are amazing. I am seeing a new spine surgeon, Dr. Andre Shaffer with Proliance in Seattle. He’s been working on the spine perspective but thinks its reasonable to hold off on spine stuff until we can see if my pain is alleviated by this nagging styloid. I’m also doing PT at least once a week and seeing my daughter who is an amazing licensed massage therapist.
My new ENT is Dr. Arun Sharma with MultiCare in Tacoma, WA. He does a fair share of styloidectomys, neck dissections, and a lot of cancer/tumor work so I have a lot of trust in him to be able to handle not only the bone portion of my problem but any vascular issues that he sees while I’m on the table. He’s not on our current WA doctor’s list but I will add him after the surgery presuming things go well. I am trying hard to stay active, mobilize, eat right, and trust that someday SOON I will have answers and more importantly, relief.
My surgery is on March 10th, so I’ll keep you posted. Keep searching for answers and relief, it’s all we can do. I have tried giving up on it, and that’s not the way to go, so I am just “balls-to-the-wall” forging ahead.
Thank you for your update, @MyStylishStyloid. I’m so sorry your first surgery wasn’t successful, but as you now know, taking 5 mm off an elongated styloid is like almost doing nothing at all. I hope Dr. Sharma will do the transcervical approach through your neck & remove as much of the remaining styloid as possible i.e. cut it as close to the skull base as possible, as that should make a huge difference for you.
It’s tough that you’re also dealing w/ the possible side effects of your C5-7 fusion. Hopefully your miserable symptoms are only being caused by your styloid & those will resolve once it’s properly shortened.
That Dr. Sharma is experienced & able to deal w/ any vascular issues he sees is something you MUST confirm with him prior to your surgery. If you do have vascular compression, especially of the internal jugular vein (IJV), that requires a more specialized surgery, & let me tell you, you don’t want to be his “guinea pig” if he’s never dealt with something like that before. If you don’t have symptoms of IJV compression, then you have nothing to worry about.
Here is a list of possible symptoms of vES which @Jules put together in this post: ES Information: Common Symptoms And Possible Explanations For Them -
*dizziness, (jugular or carotid)
*weakness, or (carotid)
*fainting (syncope) (carotid or jugular)
*TIAs / stroke (carotid)
*Pain the length of the carotid artery, including eye pain (carotid)
*Off-balance/ rocking boat/ drunk feeling (jugular)
*Ear fullness (jugular)
*Head & ear pressure (jugular)
*Brain fog (usually jugular but sometimes carotid)
*Derealisation feelings and more! (usually jugular but sometimes carotid)
I hope that this surgery resolves your symptoms, hopefully if he’s used to operating on head & neck tumours he’ll be able to remove a fair bit of your styloid! Will pray all goes well
Since I live in the Seattle area and sought consults here for Eagles, I encourage you to seek opinions outside the state with a provider who has done more than 500 ES surgeries. I have not found anyone in this state I considered to be highly competent to address Eagles surgery. I had ES surgery in CA in 2020 and that surgeon although good at removing styloidectomies, he did not address vascular compression. I am now going back in for revision with a highly experienced ES surgeon who has expertise in vascular compression. My scans from pre-ES surgery did have IJV compression and it was ignored.
Recent testing CT Venogram followed by Ultrasound with velocities (specialized to my doctor) confirm the IJV compression. If you have not had this done, I strongly suggest taking a pause as you have not been thoroughly evaluated for vascular compression.
