Right side shortened 2012 surgery 1(interoral)
Arterial bleed 9 days later emergency surgery 2 (interoral)
Left side interoral Injection with investigation 2013 surgery 3
Left extraoral removal 2013
Right side guided c.t injection 2017
I have horrific pains returned on the shortened side (right)
. Pain on swallowing
Pain behind ear
Pain in ear stabbing
Pain on turning head
Sharp stinging pain all the time
Pain shooting up right face and temple
Constant right eye twitch
Pain in front of throat hear hyoid sharp and stabbing
Dizziness
Bloodshot eye
Swallowing problems
Headaches with pulsing
Pulsing tinnitus
Does anyone have any symptoms.like mine post surgery.
Sorry to hear that you’ve got symptoms back, cheekychops, especially after 4 surgeries. It does sound like typical Eagles symptoms, doesn’t it? Unfortunately the styloid processes can grow back, we have seen a few members back who have had their styloids re-grow, so I guess it would be worth getting another CT done to see if that’s happened.
You mentioned a right side guided CT injection this year- was that for steroids or lidocaine, and did anything show up then?
Hello cheekychops. I remember you from 2012. My surgery was in May 2012, when I had both elongated styloid processes remover extraorally.
That put an end to the chronic neck and shoulder pain which I had had for many years, plus the phantom earache in the left ear, left side sore throat, finally toothache in the left molar which had no nerve anyway!
Also put an end to the dizziness and slight nausea which I had on turning my head to the right.
I have the nasty little things in a bottle …!
Such a relief!
I now have a return of neck and shoulder pain, knotty upper back muscles, and the phantom toothache has returned, plus headaches.
I have this awful suspicion!!
All I can do at this point is to go to a dentist for a panorex x-ray, which is where I had the first diagnosis.
We hope we can get some more feedback from anyone else who has had their styloid processes regrow.
EarMom’s son had his both grow back, and quite quickly. She’s written a book about their experience. You could message her… I’m sorry I can’t remember the names of any other members.
Thanks Jules, I’ll follow that up, and if I have an x-ray will let you know if anything turns up. But hold thumbs - would hate to begin that journey again!
Although rare, my son’s case did prove that styloids can regrow. Sometimes it isn’t even very clear on the CT. The radiologist who looked at my son’s CT (1 year post surgery) thought maybe it was calcified ligament, but after 2 revision surgeries, the styloid process did indeed regrow to the same length - in one year’s time. Here is my son’s story: https://store.bookbaby.com/book/Connecting-the-Dots2
As time goes on and I visit these sites less frequently, I wanted to make sure that his case lives on to help others following in our footsteps. Regrowth is devastating and even harder to convince physicians it can happen. My son’s case will be documented in medical literature as well, but it takes years to be published by the physicians.
Currently, my son is still pain free. His last revision surgery was in 2016. It has been over a year now pain-free. We pray that those bones will NEVER regrow again. Clearly, he was a child with growth spurt when he was feeling good, but no one thought these would / could regrow. Unfortunately, it happened to him. I would never wish this on anyone, but I am glad at least he agreed to share his story so that others have proper information. Never give up.
No idea. The pain left, but recurred quite recently, quite severely, and the tooth (which has no nerve) became painful and very sensitive, but is now painless. I think it may be something to do with established pain pathways.
I still have not gone for the panorex x-ray, which would show whether the styloid processes have re-grown.
Hello all, I have developed vertigo (benign paroxysmal
positional vertigo or BPPV) suddenly, which is most unpleasant! I had extraoral surgery in May 2012 for removal of both styloid ligaments, but I am aware they can re-grow. Is there anyone else with Eagle’s Syndrome who developed this problem? It seemed like something my dr. could follow up.
Hi Cyrba! I’m sorry for your new symptoms. You were active on this forum long before I arrived (2014) & I’m glad you’ve been symptom free for so many years till now.
I had the BPPV prior to my ES surgeries. It seemed to go away after my first surgery but between surgeries I was diagnosed w/ Meniere’s Disease (acquired by a head injury) & the vertigo returned. I have been free of vertigo for a year in Oct. The only real life style change I’ve made is no longer stressing my body w/ long distance running/hiking. I stopped running & take shorter & less frequent hikes now. I miss being as active but am thankful it seems to have helped stop the vertigo.
It’s definitely worthwhile getting a follow up CT to check on your internal neck structures.
Cyrba,
Vertigo was one of my original symptoms before I knew I had ES. I had a really bad episode eleven years ago that left me constantly dizzy. Vertigo to me is the room spinning which is awful. Dizzy just feels like I’ve had a drink or two. Vestibular rehab has been helpful and allowed me to live with the dizziness. You shouldn’t have too much trouble finding a PT who specializes in it.
Thank you for sharing your experience, @I_am_Groot. I’m really glad to know vestibular rehab has helped you. I may need to look into that for myself someday.
Isaiah, how good of you to reply! I am still walking like a drunk duck, but the nausea is better(touch wood) I have contacted my GP to extend my scrip for Hydrist. I agree that, since there could be a link, the return of Eagle’s should be considered. I really hope that your vertigo doesn’t ever come back!
Thank you for the feedback - I have had this for a week, and what I have got to now, I think you would term dizzy - initially it was awful, copious nausea, and a visit to the GP in a wheelchair, since not able to walk without support. The possible return of the ES has been on my mind of latter times. I think, if this does not resolve, the best solution is to go to the Dentist for a panorex x-ray. This was how my ES was found, by a very clued-up Dentist with an interest maxillofacial, very long before symptoms presented.
I’ve been where you are & am so sorry for how ill the vertigo/dizziness is/was making you. I was visiting my daughter far from my home when my last bout hit. I was in a downstairs bedroom w/ the only bathroom being upstairs. I crawled up the stairs & then scooted on my butt down the hall to the bathroom in the middle of the night. It’s comical to think about it now, but my world was spinning then & walking was out of the question. I’m glad you’re feeling a little better now.
I’m glad if your astute dentist is still available for you to see. Please let us know if/when you get the panoramic x-ray what it shows.
Out of curiosity, who did your ES surgery? I know it’s been a number of years ago, but if (s)he is still doing ES surgery, it would be great to add his/her name to our Doctors List if it’s not already there. The only name we currently have is Dr. Hoekstra in Port Elizabeth.
Hello Isaiah, thank you for your reply. My onset was sudden as well. I woke with it in the middle of the night a week ago, and the results were less amusing! My husband was very prompt with a bucket, raincoat and towels! A very wakeful night!!
The vertigo, nausea, fatigue have definitely improved, but what remains is instability and dizziness, and a visual disturbance, which I note trying to read anything on the TV screen.
I have huge gratitude to my then Dentist, but that was very long ago. If it had not been for him, I would never have started considering researching ES for the symptoms which I developed, years later. After that, a scan for neck pain, enhanced by an interested radiologist, clearly showed the elongated styloids.
It took a lot of persistence to finally get to Dr Hoektra, who took up the challenge! I definitely owe him, big time!!