So sorry that you didn’t get a definite answer…I agree with @Isaiah_40_31 that the foreign body symptoms isn’t always there, I didn’t ever have that either. Steroids can improve symptoms as ES causes inflammation…It is good that he was honest to say he didn’t think it would help I guess, rather than agreeing to do the surgery…would you consider sending your scans & having a video call appt with one of the experienced doctors otherwise? Dr Cognetti does look at scans & does these appts. At the end of the day you’ll have to keep seeing other speciality doctors to get to the bottom of your symptoms, as you’ve heard conflicting things about your ES diagnosis it would be good to get another opinion before you have to look for other potential diagnoses?
This has been and still is being considered. I was originally going to have Dr Osbourne in LA do it via telemed, before I found this group. I can agree that everyone may have similar but different symptoms, not discounting that idea at all. Misfud diagnosed me before he even sent me for the CT citing eagles at our first appt, Magnusson the exact opposite. I feel like if I keep going I can find 5 that say yes and five that say no. With that my head and wallet are a mess. Where did that doctors list go anyway? I cant find it by searching for some reason.
I had the same thing happen at a large (renowned) teaching hospital. He literally put his finger down my throat… And declared emphatically that I did not have Eagles syndrome.
I visited Dr. Hackman in Chapel Hill, North Carolina. After viewing my scans, he said I have an elongated styloids, about twice as long are more than normal and mine is short at about 2.4 cm. No issue or need to convince him to do surgery and thought I would have a 75% chance of improvement. I would not waste any time going to anyone else that is not a proven Dr. who regularly sees patients with this problem.
So sorry for this…it is apparently common for those of us searching for help.
- Physical features of the styloids besides length can often cause ES symptoms i.e. how thick, curved, pointed, twisted they are, etc. Based on this premise normal length styloids can cause ES. Length is what most doctors look at to diagnose ES which is not an accurate way to assess this syndrome just as requiring a certain symptom or symptoms to be present is not accurate.
We only have a couple of members who’ve had surgery w/ Dr. Magnusson so don’t really know how experienced he is w/ ES. Dr. Cognetti, for example, has been helping members from this forum for over 10 yrs. I would trust his opinion above many others on our Doctors List.
- I was also diagnosed before being sent for a CT scan. It seems some doctors have a better understanding of ES based on symptoms alone than others.
The Doctors List is under the Symptoms & Treatments Category. I keep pinning it so it will show up at the top of the posts but it keeps unpinning & moving further down the list. I’ll work on getting this fixed permanently.
Maybe he was looing t touch the styloid through the mouth, as in this article i sent to my dentist Eagle Syndrome: Dental Professionals can Identify Painful Condition on Panoramic Radiograph - Today's RDH
Dr Magnusson was a doctor recommended from this list and has worked on people in this forum in my understanding. If I saw him first and didn’t believe him because I still had pain and then saw my first doctor, he would also tell me I needed the surgery.
I appreciate all those things, but I also appreciate Dr Magnusson saying theres nothing I can remove that will help you, while Dr Misfud said, meh, if it doesnt help, it doesnt help and you just live with more pain. No one sounds confident that this will actually help. I feel like some doctors are super conservative and others say they are but really only want to cut. If I get a third answer of yes, its going to make want a 4th answer to see if its no. This is a horrible cycle. In addition, at least both of these doctors gave me a physical exam (Magnussons was much more in depth than Misfuds). How does this play in if Im just faxing records and not seen in person?
Also if you check @ectocake’s post Follow Up Appointments and Referral to Jacksonville Mayo Clinic - #50 by ectocake, I see we have the new school vs the old school with Magnusson having over 20 years exp and misfud only 7 in that PDF.
PS - thx for the doctors list
Some of the very experienced doctors will look at the CT images & look at the length of the styloids etc, we’ve had members have radiology reports stating that the styloids are normal length, but when reviewed by an expert they’ve disagreed…it is tricky when you have differing views, I feel for you- & your wallet!
@Oman This is why there is a forum for this rare condition - it is rare, and many doctors don’t know what it is, or know only a specific group of symptoms and will dismiss it if those symptoms don’t exist. The imaging does not always accurately depict the length or thickness of the styloids or the angle or direction in which they are pointing, and none of the imaging accurately shows bones and nerves at the same time. Many members have had to learn to read their own CT scans because doctors don’t take the time to analyze them, and radiologists often ignore them because they are small relative to other boney structures in the face and neck. So, it is important to consult with a doctor who specializes in Eagle’s to get the best evaluation of the likelihood of success, based on symptoms and the clues a CT scan provides. Dr. Hackman was pretty direct with me about what he thought he could correct with surgery and what he could not. I can turn my head without fainting now, which is a huge relief, and I can swallow without choking. I had a twitching facial nerve and crazy pain behind my eye, which was resolved completely with styloid removal, even though it wasn’t supposed to help. Styloid removal did not fix my voice, and Dr. H told me up front that it wouldn’t, but I found a good ENT who specializes in voice issues, and he made it much better with a different surgery to reposition a vocal fold. Most people on the forum see multiple doctors before finding the right one to help, and it is a very discouraging process to go through. I hope you find some relief.
@Oman - Please forgive me if you feel I’m “beating a dead horse” at this point, but as experienced as Dr. Magnusson is as an ENT/skull based surgeon, I would wager his ES experience is minimal because it’s such a rare syndrome. Yes, he did ES surgery for a few of our members over the years, but his name has barely come up on our forum compared to Drs. Cognetti, & Hackman & some others. Even w/ it’s rarity, as @Jules & @Catmd have said, seeing & trusting the opinion of a surgeon who has done many ES surgeries vs one who has only done a few, makes the most sense.
@Catmd So Dr Magnusson reviewed all my symptoms and read my CT. He has done this surgery before and Im assuming since hes invloved with the robot, that hes familiar with ES. I went to him based on this list here and his geography. He doesnt feel my cheeck pain or tinnitus would be resolved by taking out the bone. My neck pain has cleared up with an axis atlas alignment, so thats not a factor right now. I carry 5 pages of history on this, so its not like it was a convo where i left anything out. And he picked a detail out that was pretty buried so I know he read it. I asked him aboout carotid artery and he pulled out the imaging and showed me that he didnt think it was being touched and in fact it wasnt touching anything. I got 2 physical exams from him and his asst. It was very thorough. Im very sorry for what youve had to go through. I also am still not counting out a third opinion. Ive lived with this for a couple of years and Im willing to give a couple more months to see if some steroids will work.
@Isaiah_40_31 no worries on beating the horse, youve beena great help and I am grateful. I dont think you should ever feel you need to disclaim on here! To your statement, I have to believe after 23 years of practice, that he has sen more ES than Dr Misfud who only has 7 years and hasnt at all serviced anyone on this forum and wouldnt even find me an online resource to read about my condition. His carefree shrug when he said, “We can try it, not sire if its gonna help or just hurt you more.” didnt really insitill lots of confidence. Dont get me wrong, also very nice and I see hes done great things transplanting body parts for children, but his focus is mainly on cancer and has told me hes done ‘a few’. Dr Magnusson was resolute in making sure he drilled into me that I shouldnt get a procdure that I dont need, and that nothing he could remove would help me. This also all still doesnt rule out another opinion.
My question to you guys is if I do a tele health, what good is it without the physical exam? Would the pref be to Cognetti or Hackman? Im sure everyone will have a diff opinion than these guys. Or even worse, they will just cut because theyve had success before. Also, how did any followup appts work with out of state surgery? What if theres a complication?
Thanks guys for caring enough to keep this going, its appreciated.
@Oman Dr. Hackman does not do telehealth visits for the initial consultation. Dr. Cognetti does do telehealth after you send in the CT scan on a disk. When I was looking for my second surgeon, there was a 6 month wait to see Dr. Cognetti via telehealth, but I got in to see Dr. Hackman in person in 1 month. Post-op follow-up with Dr. Hackman was via telehealth. He uses dissolving sutures and glue for the incisions, either in front of the ears or in the neck, depending on the length of the styloids. There was not much pain with the external incisions, and they healed quickly with very minimal scarring. I was having lunch at a restaurant the day after surgery and eating normally with no pain. Unless the styloid is physically protruding into a structure the doctor can feel, the in-person exam may not be important. Some of us on the forum have posted 3-D renderings of our CT scans on the forum for other members to review. I was looking back though your comments but did not see any mention of how long your styloids are. Does the radiology report specify the length and thickness of each? If you have a disk with your images, you could share renderings for others to review.
10-4 on the dr/appt stuff, thank you. And thats just the thing, the radiology report listed ZERO abnormality with styloids (and none with anything else, jugular and carotid were patent), which is why i was totally shocked when ‘laughing to his interns Dr Misfud’ waked in with half a smile and said, we’re booking you for surgery! Without explaining anything. Im waiting to get a 3d scan, which is a whole other story, but wont happen until November since the only one interested in doing it is my chiro - not even the surgeon… Dr misfud did say that my styloid was 1mm longer than it should be which is very long in his experience. Dr Magnusson said he sees no calcification, ENTs who were useless also say no calcification. So thats where Im at there.
The interesting thing here is your the first person to say the neck procedure didn’t come with awful experiences. Does Hackman only do cervical? Anymore you can write here about your procedure an recovery would be very comforting. Thank you.
If you have had a regular CT scan, there are computer programs to make a 3-dimensional rendering. I have used 3-D slicer, which is a little tricky to learn, and Radient dicom reader, which is pretty easy, though not as powerful. Both are free. Request a copy of your CT scan on a disk so you can look at it yourself. I think Dr. Misfud probably meant that your styloids were 1 cm longer than normal, which would put them at 3.5 cm or longer. It is unfortunate that he did not explain what was going on and went directly to scheduling surgery. I understand why you are having an issue deciding what to do - you don’t have all of the information you need to make a decision and 2 completely different opinions.
Dr. Hackman removed my styloids through incisions along the front of my ears. There is a natural crease there that he cuts through so scaring is minimal. He starts with this incision, and if the styloids are not too long, he can remove them from those incisions in front of the ears. For longer styloids, he goes through the neck. Several people on this forum have had surgery through the neck with good results. I had some pain, but it was very manageable and pretty much over after a week. The incision area may be tender, so if you are a side sleeper you may have to get a pillow with a hole in the middle or learn to sleep on your back for a month. I was up and moving, bathing, eating, shopping, etc. the day after surgery, and traveled back to Florida comfortably one day later. You have to take it easy until the incisions heal - no heavy lifting or exercising until you know the incisions have healed and inflammation is down. I was back to driving and at work within 2 weeks, and out working in the yard after a month. The worst issue I had was temporary nerve damage that affected my eyelid, which wouldn’t close on its own. I think this is pretty common, and it did go away after a few months.
My first surgery to remove styloids was intra-oral - with incisions in the back of my throat near my tonsils. There is no comparison with recovery time and pain. The external approach is the best way to go, in my opinion (having experienced both). Less pain, easier/faster recovery.
hey thanks for all that. So I have seen my scan in 3d and posted some pics on here somewhere from it. Its 2023 and this tech guy doesnt even have 1 machine in the house with a CD drive at this point. When we look at the 3d with the chiro, i have some ligament wrapped around the styloid, which isnt really wrapped around there according to Magnusson, and wasnt at all mentioned by Misfud. Im waiting for that new machine to come in because it will be a current image of my head and we can see whats going on from there, plus Illbe able to sit with him and work with it to see whats positive and whats false/positive. Misfud never mentioned any complication much less one where something was wrapped around the styloid, so I think the chiro was just wrong or we were looking at a bad angle, since no one else sees this (have also had GP and prosthodontist check it, basically anyone who can read a scan that I know is being made to look at it). I just went looking for any length measurements in my Misfud visit notes in my portal, he actually writes this (no length included):
CONSTITUTIONAL: The patient is awake and alert, and oriented times three. There is no acute distress
EYES: Pupils are round and reactive to light bilaterally. Extraocular motion is grossly intact. There is no conjunctival irritation
HEAD: Atraumatic/normocephalic, hair and scalp normal.
NOSE: The nasal dorsum is well supported. The nares are patent and nasal mucosa pink/moist. There is no significant turbinate hypertrophy or anterior septal deformity.
ORAL: Normal/health dentition. The tongue protrudes in the midline. The oral mucosal surface is pink/moist with no pertinent intraoral mucosal lesion or mass.
THROAT: There is no significant tonsil hypertrophy, uvula elevates in midline, no mucosal lesion.
NECK: Soft/supple, there is complete range of motion. The carotid pulses are within normal limits bilaterally. There is no palpable thyromegaly or nodule. The trachea is midline. There is tenderness to bimanual palpation along the submandibular gland and along TMJ on the left.
VOICE: Strong voice function
LYMPHATIC: There is no evidence of cervical or perifacial lymphadenopathy that is palpable.
RESPIRATORY: Regular respiratory effort with non-labored breathing, no stridor/stertor, no accesory muscle use.
NEUROLOGIC: CN II-XII grossly intact with symmetric facial function.
SKIN: Warm, normal coloration, no abnormal skin lesions on anterior/posterior head & neck examination.
PSYCHIATRIC: Regular mood/affect.
DIAGNOSIS: Potentially elongated styloids, Symptoms potentially Eagle Syndrome
So everything is good, except lets call it eagles because potentially it is. Which says to me “or it could be anything else” And this comes right before the line, “discussed with patient that surgery may be ineffective”. That all makes my brain explode, because it reads like experimental surgery for a good hunch. That being said again, its possible and Im not closed to that, but this is why I went on the hunt for info and other opinions. The attitude at the visit was very much, well, you tried other things, maybe ts this, i can perform a surgery that may or may not help if you want me to. That just doesnt sit with me. The other stuff that doesnt sit is his 2 week recovery, with my eating solid food when i wake up from the surgery and being able to drive 2 days later. I had a tooth pulled recently and couldnt drive 2 days later, much less with an invasive injury. That quick recover combined with some of the things Ive read here makes 2 and 2 just not add up in my head, and I have to have something that makes sense to me to be able to make an informed choice - that I just dont have yet.
Onto something more interesting from your reply though. So far Ive read about the neck surgery and the intra-oral obviously, but are you telling me you went through a third kind (by the ears) meaning there is a 3rd way to do this?
And just to clarify your last line, this 3rd way, through the ear slits was a much easier recovery than intraoral? Am I reading that correctly? Thats wonderful news if so, and not something I understood up to this point.
And thank you for your reply!
Yes, in front of ears.
That doesnt look bad at all. Thank you for sharing it. That was a better recovery than the transoral?
I have a lot of the same issues, and I will be contacting Dr. Hackman. It’s good to hear from someone he has already helped.
If you don’t mind me asking, how long was it from consult to surgery with Dr. Hackman? Did you travel from far out of town to see him? Edit: sorry I continued reading and saw you’re from Florida too and that travel was no problem the next day. That’s awesome! My styloid is connected to my hyoid on one side, making its way there on the other. Does Hackman do both at the same time?
@ectocake - Yes, Dr. Hackman does bilateral surgery. He’s the only doctor on our list who routinely does it for those w/ bilateral ES.