Share with us the treatments that had helped you resolve your symptoms.
Hi again, Can any of you tell me if your symptoms are worse on the opposite side that the doctor plans to operate first? My surgery is for Right styloid and jugular decompression yet my left side is way more painful. Anyone else?
Thatâs weird bc I was diagnosed on my left side but no diagnosis on the rt. Concerned about not getting both of them cared for
1 Like
Hi @Sunshinegal,
I somehow missed your question when you posted it. I assume youâve had your first surgery by now. I was totally in your boat before my first surgery. My left styloid was âkillingâ me, but my right side symptoms seemed somewhat insignificant. My right styloid was shorter, but it was thicker & growing more straight down do my surgeon said it had to go first. I begged him to do the left first up until I was put under for the surgery. In the end, it did turn out I had some pretty nasty symptoms being caused by the right side. Would have never known it until the left was gone though.
I hope youâre healed & getting on with your life although w/ bilateral ES, both styloids often need to be removed for the best results. Please update us as to how youâre doing.
@Kbrowning11 - Keep pushing for a CT scan of your neck from skull base to hyoid bone w/ emphasis on looking at the styloids & stylohyoid ligaments. That will be the best way for you to know if your ES is bilateral.
1 Like
I had my first surgery in 2021 on the right side through my mouth. Again in 2023 to then continue to have extreme pain on the right side and then later, the left side begin to be extremely painful, I went to my surgeon and he determined that it was Best to do the surgery on both sides. I talk to him at length about the fact that I knew the left side was going to get progressively worse and he did both sides at the same time. He did the second surgery on my right side and then the surgery on my left side on the same day and I spent one night in the hospital. I had tubes in my neck for drainage for one week and itâs been about 6 1/2 weeks and Iâm doing ok, still recuperating, but a huge difference. would advise you to tell him that you would like to have both sides operated on, unless you feel a medication might help with symptoms, but we all know that sometimes thatâs not effective. I would advocate for yourself and ask about having both sides done at the same time. Please let us know what happens.I care! Good luck.
1 Like
I just noticed that your post was from 2022. I apologize. I hope you were able to get results, please let us know how you are doing.
1 Like
TDLR: was diagnosed with eagle syndrome and had two styloidectomy (both types). Still have pain today. Tip 1) extraoral over intraoral. Tip 2) get a nerve specialist involved. Tip 3) get a second doctor opinion if needed.
Background
I have a permanent cephalalgia (headache) since 1997. I also have about 80% of eagle syndrome symptoms since 1997 or since.
I have a long list of medical investigation, tests, scans, actions, with 20+ types of specialised Dr and soft medicine folks. No one ever found something intelligent. As a sample of the list: Cortisosteroid injections in Arnold nerves by a anesthetist (pain specialist); removal of all wisdom teeth by a dentist; injections of botox on scalp by a neurologist; 4 styles of chiropractors; more than 10 MRI scan and xray; about 12 type of medications tested (nothing works); special night guard with a TMJ (temporo-mandibular-joint) specialist; electric tense machine with a pain specialist (made it worst instantly).
Everything happening from now on is in Melbourne, Australia, using private doctors and hospitals.
Diagnostic
In 2017, I self-diagnosed an eagle syndrome and went see my doctors (general practitioner (GP), neurologist) who validated it with an MRI.
Left side was 41 mm.
Right side was 44 mm.
But only my left side was appearing to be problematic. Increased pain: Turning my head up, down and to the right (turning left did nothing). Sleeping / touching my left side / my ear. Contraction of my left neck and face muscles near that area.
Glitch: my GP sent me to an otorhinolaryngologist (ENT) to validate the elongated styloid process / the eagle syndrome. That ENT did not ââbelieve in the existence of the eagle syndromeââ as a concept. No facts were involved, just his belief. I left dumbfounded that a medical doctor would not be more objective and science based. I considered filling a complaint to his professional order.
I went back to my GP, told her the story, and demanded for the first time in 30 years a second ENT opinion. She agreed. She called an ENT and directly asked him if he had eagle syndrome experience. He did.
I went see the second ENT, sat in the chair and before I even spoke, he looked at the MRI / 3D rendition and told me ââthatâs too long, thatâs a problem; we should remediate thatââ. He had seen and treated such cases previously and showed me the quality of his work (ex. pictures post surgery).
Surgery 1 â intraoral (via the inside of the mouth)
I demanded the intraoral surgery (type 1) to avoid butchering my beautiful self with a face scar, and also, my tonsils were already out of the way, having been removed when I was young.
The surgery lasted six (6) hours because the doctor (team: ENT, pain specialist, two nurses) was facing difficulties to access properly the bone using this type of surgery. He mentioned me after the surgery that he could see the bone wrapped in nerves and was only able to chip about 5 mm out of it. With that debriefing and the mention of wrapped nerves around the bone, we took the decision to proceed with the other type of surgery in three (3) weeks.
Surgery 2 â extraoral (opening the side of the skin beside the ear and jaw)
The surgery was a success, and the bone was almost fully removed (leaving about 4 mm of it). But itâs important to note that he did not touched nerves whatsoever.
For several days / a few weeks I looked like a Frankenstein with a massive side scar.
I am writing this about 8 years later and you could not figure out I had a surgery without me telling you and inspecting my side on a shaved day. The ENT doctor did a wonderful job.
Result:
Did my cephalalgia went away? No.
Did any of the symptoms resorbed? No.
Do I think it was the issue / the right thing to do? Yes. - Because the bone was clearly the source problem.
The now residual problem, still to this day, is the fact that no one untangled the nerves that were wrapped around that bone.
The doctor suggested to go see a massotherapist, but, it wonât be able to untangle anything with an external massage. Try doing that with your computer cables, massaging themâŚ
I believe that someone with nerve untangling surgery experience would be the right thing to do. I will try to go see a neurologist (but currently in Canada, and specialists are harder to find and access â I might wait to go back to Australia).
Recommendations:
One: If you go for surgery: do directly the extraoral type. Just ensure you use an ENT specialist with experience with this, and he should leave minimal scar.
Two: Get a neurologist surgeon involve for phase two (after the bone is removed) to do something about the nerves. Either during the same surgery or as a follow up (but since your side-face is already open, you might as well do it at the same time).
Three: in doubt about a doctor, ask for a second independent opinion. There are some bad doctors out there. Avoid them.
@Raistx - Welcome to our forum. Iâm very sorry to read your story see that you had a poor outcome after 2 styloidectomies on your symptomatic side. Good news about the lack of an ugly neck scar! Of interest is your note about the doctor observing nerves wrapped around your styloid/tangled up in the area of your styloid but none were touched during your styloidectomy. Did the doctor give you this information after surgery?
It would be a rare day that an external styloidectomy is done w/o a nerve or two needing to be moved out of the way in order to resect the styloid which, of course, causes increased pain for a while post op as even careful touch of nerves causes irritation. Nerve monitoring using electrodes during surgery also helps prevent nerves from being damaged during surgery. Do you know if yours were monitored?
The nerves most often âin the wayâ during surgery are the trigeminal, glossopharyngeal & facial nerves. Irritation of/damage to the trigeminal would be a possible cause of long term headaches though vascular compression of the IJV or ICA are more commonly the perpetrators.
My glossopharyngeal nerve was wrapped around my right styloid & had to be unwrapped to safely remove the styloid. That left me w/ a half paralyzed tongue for about 9 mos. It did eventually recover about 90%.
The best way to find out the situation of the nerves in your neck is to get a FIESTA or CISS MRI scan. These scans use software specialized to visualize nerves. A normal MRI shows other soft tissues but not nerves. If you havenât had a FIESTA or CISS scan, it would be wise to look into getting one before someone else goes digging around in your neck as it will provide valuable information as to what may need to be done to help you.
We advocate the external (transcervical) approach for ES surgery on our forum though we do have members who had the internal (transoral) approach with a successful outcome so are in complete agreement with you there.
This is great information especially because itâs based on your personal experience. Iâm sure it will be helpful for some of our newer members who are still deciding about ES surgery.
I hope youâre able to find a neurosurgeon who can help discover the cause of your ongoing pain & who will create a plan for helping to resolve it.
*After I wrote this tome, I saw that @Jules gave you similar advice in your other post. Itâs good we mods agree on so many things!! 