I had a doctor do exactly that too back in 1998. That stinks. But his explanation was that he didn't feel comfortable doing it. So is no explanation better than a lame one? Both do nothing for you.
why is it every doctor knows no symptom can be caused by ES? And then it ends up being exactly that.
What happened when you had the lidocaine injection? That is listed somewhere as a good test for ES-if the pain goes away, it's probably ES. I had 2 over the course of a 2 years and my pain went away for about 3 months each time.
Well I got the report from the CT and it says the styloid is less than 3cm.
Here's the report, I'll bold the interesting parts:
Findings: There is mineralization of the bilateral stylohyoid ligaments, which appears symmetric and measure less than 3 cm. In addition, there is mineralization of the tendons of the bilateral styloglossus muscles.
There remain postsurgical changes status post suboccipital craniotomy with mesh repair.
There is no evidence of acute facial fracture.
Small mucous retention cysts in both maxillary sinuses. Minimal opacification of ethmoid air cells. Remainder of the visualized paranasal sinuses are essentially clear. Mastoid air cells are well pneumatized and clear.
Otherwise, there is limited evaluation of the soft tissues along the intravenous contrast. The unenhanced parotid and submandibular glands are unremarkable. There are no enlarged cervical lymph nodes by CT size criteria.
Incidental note is made of impacted tooth interposed between teeth 8 and 9 in the region of the nasopalatine duct. (between 2 front teeth)
So I think I'm going to beg, plead, and fight my insurance to try a spinal cord stimulation unit for peripheral pain. Ugh.
My surgeon did the external surgery. He said that the internal(mouth) Approach lent itself to problems with infection. I was worried about the scar but they put it in a natural fold and after it healed I couldn't hardly see it. Not all Doctors understand Eagle Syndrome. They can be judgmental and leave you feeling like you're loosing your mind. I'm sorry they cancelled on you. If he does feel comfortable operating, it could be a blessing in disguise. My Surgeon was a vocal cord specialist in Columbus, Ohio at The James Center. Don't give up. I used a heating pad and anti-inflammatory meds. to get by. Good Luck.
I will add my comments on styloid length here. and symptoms. I had my left process removed 7 weeks ago and the doctor said the CT showed it to be only 9mm longer than the one removed on the right in 1990. It was 3cm longer and surprised my doctor. If it was only .9cm longer I wouldn't have had the symptoms nor could I feel it in my mouth. I stand by my 25 year experience that a CT scan or x-ray only pick up the most calcified parts and does not show the entire ossified cartilage. I had this idea even in the face of the CT and it was confirmed by the surgery. My ENT was surprised when he opened me up expecting to find a little styloid.
Interesting shaw. Maybe I'll try a second opinion. As it is now my neurologist has just been raising me up on oxycontin at each visit, but it doesn't really help much. ugh
A neurologist or any doctor-I went to ENT's reconstructive surgeons but never a neurologist. But the best question to answer for yourself is what can you feel? Do you feel the hard stick in the back of your throat where it hurts? Scans be damned. I did get some really good shots with simple x-rays or panoramic x-rays or a mastoid series x-ray. The doctors that know of this syndrome have just stuck their finger in my mouth and touched the bone and knew where to poke without digging around until I screamed-those were the ones I considered operating on me. the ones who show they know not guessing, But like I said back there-can you feel it?
Also back in 1998-a lidocane injection in the tonsular foccia that makes the pain go away is the test for eagles showing the nerve is affected.
Hi Emma; how are you? I'm 8 weeks out from surgery and I think my symptoms are mostly gone. The surgeon says much of what I'm feeling is the scar tissue tightening up at the incision and it will take 6 months for that to soften. Yes I've reached in to feel--it feels pretty hard where I was sewed together but the protruding bone is gone. there is nothing there now. I don't know if I have the symptoms anymore after 15 years of them-but I'm pretty sure my ear doesn't hurt as much, pain in upper throat is much less, ear pressure is lower but I'm supposed to wait the 6 months for the swelling to go down and the affected parts to become normal again. I do have a headache but that is because the styloid was pressing against the carotid artery and I have increased blood flow to my brain. So with all the possible effects of this thing in our heads, doctors need to rent a clue and just remove it even if they don't think the symptoms are caused by it----its not supposed to be there so remove it and see what happens, that's what this doctor's idea was "lets take that out" not "I'm not comfortable". This surgeon was prepared and had a vascular surgeon assist in case repairs on my artery needed to be done. He knew his ES surgery--I think it was because he was relatively young-chief resident from 2■■■■ so I figure he is in his early 30's and had been taught this. Not the old farts in Beverly Hills who just wanted to do nose jobs (even on me) on over inflated men and woman. I go into an ENT's office and its full of woman with huge lips and men with their eyebrows halfway up their foreheads. Nobody has anything wrong with them but a youth complex and I don't think these guys would recognize a medical necessity if it bit them in the butt. But that was where my medical group is located so you get that client and their medical skills set.
see.........I love to show this thing that showed to be .9cm on my CT. Only the upper think part was on the CT. But as this was my first inner oral one it feels different than the 3 through the neck.
The ENT stuck his finger in there then scheduled the CT, then did the lidocaine in the back of the throat which seemed to stop the pain, then he scheduled surgery.
If feels like something physically poking back there and discomfort deep in the ear like something irritating it.
At some point the ENT talked to my neurologist and I guess my neurologist talked him out of it.
That was at the University of WA in Seattle, not sure where to go, when they canceled my surgery they told me to go back to the neurosurgeon who did my craniectomy.
Right now I'm supposed to go to schedule an appointment with the pain specialist.
Hi there-I was sent to the pain center at cedars too-a list of pills to take! Just to set the Dr's straight, there is something poking back there--geez do they need a diagram. Wikipedia has a great x ray picture on its ES page--show them that. CT's are ok but I got my best views from a friend who needed x-ray time so he used me. But it took patience and hours to get a good shot of the shadowy thing-it was even hard to see then but you just needed to shine it in the light just right. The CT showed a good doctor that the bone was pinching my carotid artery causing carotidynia which caused more neck pain. See how light it is. These look pretty much like mine. I mean looked!
Find a head and neck reconstructive surgeon-I think they would be the best. A neurologist is not interested in bones, and pain specialist is interested in Rx's. But the one I saw said surgery since after 15 years I'd been pain pilled to death and he knew he had nothing new to try.
The effect of the lidocaine is a good sign-I had a doctor do that in 1998 and had 6 months of relief--and then he cancelled my surgery for Nov. 16, 1998.
If they don't take it out you might need a neurologist as the rubbing of the bone can tear the nerve sheath. that is the one thing I might end up with. just have to wait 4 more months to a year to see where all this lands. good luck
Thanks shaw. I should get a copy of my CT and see for myself. When the ENT looked at the CT he said it was long on both sides, but then when I read the report it said it was under the 3cm threshold or whatever to be considered eagles. The report also mentioned cysts in the maxillary sinus.
My main problem is I have more pain than the eagles area, so I may have Eagles and something else. The problem is I have a lot of nerve pain in the front and side of the face away from the eagles area which is why the neuro said it's not the cause of the trigeminal nerve problems I'm experiencing.
But at the same time it feels like a toothpick is pressing on the roof of my throat just above the tonsil, and there's a pain down the side of the neck below it. Basically right where those red arrows are in the pic you posted....
I have a lot of pain bursting out of the temple/jaw area right where those arrows are. I'll look into the neck specialist.
The ENT I went to jumped right to Eagles after poking around in my mouth until I screamed. It seemed rather straightforward to him, but he was young so not sure how much real world experience he had...but from the location he immediately said eagles...
First-CT's lie a lot. like I said my dr was prepared to remove .9cm (the ct showed 9cm but my finger showed more) when I woke up from surgery he told me he was surprised. The finger palpation proves more to a knowledgeable dr. Your ENT seemed to know right where to touch. Mine did and asked if that recreated or increased my symptoms-which it did. This is a good sign I've also had doctors where I tell them where it is and they dig around and push as if they want to shove the bone through my ear. Can you feel it? It might just be my OCD but I felt of it a lot-rubbing it made it feel better-even making myself gag relieved some pain and pressure sometimes.
I have (had !) the same symptoms-the throat pain with ear pain, pain radiating down the neck, swallowing pain, raw tenderness all around the tonsil area, the feeling like my ear just got off an airplane-that was due to a pinched Eustachian tube which caused a pressure differential across my ear drum plus recurring infections because nothing could drain. The symptoms and secondary problems of ES are many depending on how the bone calcified and grew-my right one was straight into cavity my left was twice as long (6.5cm) and broken twice too and was down to my law line. Also the statistics say 4% have it but only 4% of those have any symptoms, so it seems there are many variables-see we are special and deserve special doctors. My doctor was a facial plastic and reconstructive surgeon and his co-surgeon was a endoscopic sinus and skull base surgeon. So I think a good surgeon who has done it before would be good. oh plus one that actually talks to you like they know they need your permission to cut you open not one of these that thinks they are doing you a favor. Run from those. and if you ask questions and they get irritated leave.
neck maybe-skull yes-its not your neck-its your neck that hurts but not the cause. ENT's are at least closer but this skull base surgeon I never heard of until 2 months ago and that seems pretty on target.
My doctor is proud of the job he did and he deserves to be-my symptoms seems to have all been minimized. I found him because my medical insurance sent me after they found out that they were having my surgery at UCLA and they cancelled that since my insurance hospital is cedars Sinai-so it was luck after looking for so long; His name is Dr. Henry Chen, MBA too!
One of my ENTs who may be the surgery guy for me is a skull base surgeon, normally removing tumors at the skull base. He is officially an ENT. You can search craniofacial surgeons, maybe? Head and neck surgeons, also, like someone suggested.
Eagleheart, who was the "expert" in Portland who disputed your diagnosis? I ask because I live in Alaska and am researching options in Portland and thought I'd found "experts" Would you mind letting me know?
eagleheart said:
I agree with the advice to contact Dr. Samji. I am also on the west coast, and I can tell you that I called all over Seattle and there was no one. I finally flew to Philadelphia for surgery with Dr. Cognetti. Had I known about Dr. Samji, I would have gone there. It's worth it to travel for help. Too bad we can't just get a good surgeon in Seattle. So sorry you got cancelled on.
I definitely think you'd be glad if you sent your CT to Dr. Samji. It's so refreshing to talk to someone who knows what they're doing. I even traveled to Portland for a so-called "expert," who said he'd done a bunch of ES surgeries, and who assured me I didn't have eagle syndrome. I did.
Curious what dr. You saw at uw. I am currently seeing them for eagles as well and have gotten quite the run around. I have seen DR. Fowler and am trying to get into dr. Futran soon as I hear he is more experienced with this.
Alaska Eagle, just in case Eagleheart isn't back for a while, I think who she was referring to was Dr. Eric Dierks. The reason I remember that is because I was trying to get in to see him too. I'm not 100% sure, but that's what I recall.
From what I know, most people from Oregon and Washington end up going out of state for Eagles.
Alaska Eagle said:
Eagleheart, who was the "expert" in Portland who disputed your diagnosis? I ask because I live in Alaska and am researching options in Portland and thought I'd found "experts" Would you mind letting me know?
Sorry I've been missing for so long. I guess I'm like everyone else who disappears once their symptoms go away. I still have small flares but they're fewer and farther between the more time passes.
Yes, I believe it was Dr. Dierks who said I was lucky not to have eagle syndrome. I would have had to look that up, but heidemt miraculously remembered it and now that I hear it, I'm pretty sure that was his name. He was a very nice guy, but I obviously strongly disagree with him about my eagle syndrome diagnosis.
I also saw a dr at UW who agreed to do the surgery but had never done it before. He said he'd team up with some other doctors. He never followed up on it and I couldn't get anywhere else with him, but I decided I wasn't interested in being his first surgery, anyway. Don't think his name started with F, but I can't remember his name anymore after such a long time. Some young guy that seemed capable and was able to find the styloid, but I don't like to be a learning experience.
