Ang, I'm getting confused. Everything I've read and have been told is that you need a CT scan with contrast to see Eagles. I had an MRI and they couldn't see my styloids. I wonder why your doctor is saying MRI when I thought the calcified styloids don't show up on those.
They did mine with contrast. recently I did an MRI for my head and they can see calcification. Must depend on the dr. I've only had MRI's with contrast
The 2 doctors we have seen specifically for eagles only wanted the 2d CT without contrast. They didnāt even care about the 3d & didnāt ask for anything else.
I've had MRIs and CTs and the only time they have shown up is in a 3D CT....However, I don't think the MRI or CT had contrast. I also have read that 3D CTs with contrast are the best to show everything and second best is a Panaramic Xray. This is just based on the majority of what I have read on here.
My Imaging history--I have a major issue with our unending efforts to bring that one view that will impact a doctor enough to operate-when it doesn't even matter.
In 1989 I had 2 MRI's one CT and nothing popped up.
One panorex done by an oral surgeon in 1990 showed the right one perfectly and 3.5cm long and was removed in 2 months following pictorial diagnosis. But just from the description of my symptoms, my orthodontist told me what I had 4 months earlier.
the Dr. hell run around is beginning to feel fake to me since 25 years ago a braces guy knew what it was. But now we spend our time trying to get the best views to convince doctors that wont operate anyway just to get some acknowledgement that this is happening to us.
I gave up trying to do that and left many offices-with the words "lazy amateurs" flowing from my mouth. I'm loved.
My MRI's showed nothing-I was told because its for soft tissue-not boney things.
I posted straight-on x-rays and they were good views of the styloid. The best was a mastoid series.
The CT of the neck with or without contrast identified the process was pushing on the left carotid artery. But in the past year of other CT's of other parts I was told CT's are limited anyway and a direct view is best-either scoping or x-rays. And from past experience I think that is true. One good x-ray should cause action. CT's are also dependent on the computer processing it-and x-rays can be redone right there and its a lot less radiation.
How many pictures of the sky do we need to bring to a doctor before they admit its blue?
See X ray below---it's the best view of a long process I had. its shadowy but very viewable. And its just surgery that can be done very easily with all the risks of any other surgery. the risks are what we should be worried about not the fact that we aren't even listened to.
In 1990 1 good x-ray and 2 months later 100% relief. Since 1997-mri's, ct's, x-rays and it took 16 years to get it right. IT WAS NEVER THE IMAGE, IT WAS THE DOCTORS.
It was never described to me as difficult or odd or go away by the doctors who did a good job. So their denial might be more an indication of their skill and NOT your lack ES.
Hmmm Shaw, very interesting point. So essentially you're saying that you can bring just about any picture to a good doctor and will get action. But you can bring an extremely good picture to bad doctors and still nothing will happen.
I think you make sense. But I also think that getting a good picture and confirming to ourselves that we're not crazy has some benefit to our psyches as well. And it feels more comfortable bringing a good picture to any doctor - you are better prepared. If they won't operate on you, at least it's not because you didn't have good documentation. And it could serve to help educate them for future Eagles patients.
I have to think about this some more.
Don't think I didn't blame myself for such delays-didn't have the correct view because if I did they would act. also in my case, the malpracticy operation made me feel like the Dr. gossip mill had made me radioactive.
what I'm really trying to convey is that we know what we have-we have been living with it for years. they better know or move on. In 1990 I had no idea what I had and needed a good effort to find out---in the second I knew exactly what I had and I needed no convincing but it took years to convince a doctor to work on me and he removed the wrong thing--just like any other surgery, mistakes are made. The effort to convince ourselves is tiring more than trying to convince a doctor. The pain I dealt with was physically and emotionally draining and made me desperate to resolve the pain. When a doctor suggests using cocaine to kill the pain by numbing the sinus cavity we are doomed and feel we just didn't bring the "right" picture. This is the lie we tell ourselves because that is not how medicine is supposed to work--we will do better next time-sounds like a bad marriage. Steroids, opioids, hot compresses, cold compresses--anything.
Look at my cancer diagnosis-1 Friday tumor found next Friday it was removed-1 week from diagnosis to surgery. THIS is how medicine should be and I didn't even have any pain. I'd forgotten quick was possible after all the hoops I went through.
Last year it was a fluke I got a doctor who took one look at my CT and said "well we will just have to take that out". No song and dance just a doctor who would do it and I don't have a clue what made him different from the others--it wasn't my pics they were the same as I had since 2003.
Oh I thought bringing my pics and my background from 8 years previous was going to make it so easy to get it done in 1998--did not happen my knowing had no bearing on a highly recommended doctor. He scheduled surgery and then cancelled it.
I have never read on this site about someone that didn't have all the evidence they needed when they went. But still end up defeated.
Every story I read hear-like yours is like mine was from 1997-2013. The first only lasted from July 1989 to November 1990 and I thought that was too long--joke was on me.
It is not the ES that drives us to have every T-crossed and I-dotted its the attitude we encounter. We will be perfect and they will operate. Like we have to sell our symptoms.
As I've said lack of empathy is the worst symptom of this.
Remember the person who got immediate treatment because the doctor who the person went to had ES previously themselves and operated right away--that was a couple of years ago here.
My joke became if I was a doctor I'd operate on myself. I seemed to know more than the ones I saw--but I also thought that the other reason was because this is Beverly Hills, these doctors only know how to fix noses not real life saving surgery. Just the vain type. I also got offered to have a nose job done and say it was for the ES so the insurance would pay-I called that doctor a quack and reported him for this apparent common scam.
There is no reason we should work so hard for relief of constant severe pain.
Maybe the bladder cancer was caused by all the x-ray radiation--that would be ironic huh?
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MRI's won't show if it doesn't have contrast. I'm sure the 3d or whatever CT's with contrast work but I know also based off the actual knowledge of the radiologist will also make a difference. If you talk to you dr. they have to specify what to look for, in this case ES and most radiologists have to research to figure out what it is they are looking at or for. I had my dentist tell me I had it. At that point I had got braces, removed wisdom and tons of therapy. two years later, 8 Ent's later I found mine that knows what it is and knows the amount of pain it can cause someone. Don't go to general dr.'s or pcp's, and don't give up... sometimes being pushy gets you help... as for me... I had/have ES on my styloid but now after accident I have my hyoid calcifying. I hope you get help and if they say no surgery etc... well it will only get worse before it gets better... surgery helps relieve esp if you can't turn your head etc..
shaw said:
My Imaging history--I have a major issue with our unending efforts to bring that one view that will impact a doctor enough to operate-when it doesn't even matter.
In 1989 I had 2 MRI's one CT and nothing popped up.
One panorex done by an oral surgeon in 1990 showed the right one perfectly and 3.5cm long and was removed in 2 months following pictorial diagnosis. But just from the description of my symptoms, my orthodontist told me what I had 4 months earlier.
the Dr. hell run around is beginning to feel fake to me since 25 years ago a braces guy knew what it was. But now we spend our time trying to get the best views to convince doctors that wont operate anyway just to get some acknowledgement that this is happening to us.
I gave up trying to do that and left many offices-with the words "lazy amateurs" flowing from my mouth. I'm loved.
My MRI's showed nothing-I was told because its for soft tissue-not boney things.
I posted straight-on x-rays and they were good views of the styloid. The best was a mastoid series.
The CT of the neck with or without contrast identified the process was pushing on the left carotid artery. But in the past year of other CT's of other parts I was told CT's are limited anyway and a direct view is best-either scoping or x-rays. And from past experience I think that is true. One good x-ray should cause action. CT's are also dependent on the computer processing it-and x-rays can be redone right there and its a lot less radiation.
How many pictures of the sky do we need to bring to a doctor before they admit its blue?
See X ray below---it's the best view of a long process I had. its shadowy but very viewable. And its just surgery that can be done very easily with all the risks of any other surgery. the risks are what we should be worried about not the fact that we aren't even listened to.
In 1990 1 good x-ray and 2 months later 100% relief. Since 1997-mri's, ct's, x-rays and it took 16 years to get it right. IT WAS NEVER THE IMAGE, IT WAS THE DOCTORS.
It was never described to me as difficult or odd or go away by the doctors who did a good job. So their denial might be more an indication of their skill and NOT your lack ES.
Ang did the Hyoid clip help??
he didn't clip the hyoid. he shaved off what he could. yes it most definitely helped although it has started coming back. I had that surgery in Dec of 2011, I am due for another updated mri. I got on in April 2013 and it was 16mm so I wonder what its at now. My neck has been bery painful lately... and headaches are beginning again... He said they arn't sure what the reason is.. he said ppl usually get ES after tonsil removal but it helped things slow down a bit. But yes this surgery most definitely gave me relief!
Thanks Ang I feel there missing something so all 3 surgery and still have symptoms a lot less though .I had a ct done again 2 years after styloid removal and there was no growth but I feel pressure right at the hyoid nice to know it helped a little was hoping you were symptom free.its the worst waking up from surgery and knowing itās still there
Omg, HUGE difference! It was a god send getting those surgeries because my symptoms are ten times better and at times I actually forget what the suffering I had gone through felt like. Do you live in AZ? I hear people have the syloid removed but doesn't help. I just had mine shaved down. Honestly the hyoid bone surgery you should think about bc its been since 2011 and I'm still going strong :)
Deleone said:
Thanks Ang I feel there missing something so all 3 surgery and still have symptoms a lot less though .I had a ct done again 2 years after styloid removal and there was no growth but I feel pressure right at the hyoid nice to know it helped a little was hoping you were symptom free.its the worst waking up from surgery and knowing it's still there
Iām really considering it but last time I saw my Ent who did my styloid removal I brought a ct 2 years after styloid removal and he said my Hyoid is fine ,I just want to circle the part of my throat were the main symptoms and pressure start and have them open it and take a look,unfortunately they wonāt do that I should see another specialist Thanks for sharing Ang
Hi TIJN: I'm in Richmond, VA. I'm wondering if you'd be willing to share the name of the doctor you used here in Richmond for your surgery. Would you recommend him? Thanks.
tijn26 said:
Hello,
i am from the nederlands. i am now 36 years old.
2 years ago i hurt that i had the eagle syndrome. I had the same feelings of pain as you.
I had the operation and they cut the eagle bone away.
After 4 weeks i was totely pain free and now living without any pain anymore.
So go do the surgery and find a doctor ho knows how to do se sergery Eagle
good luck greetings from Martin
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Hi NavyWife. I am wondering if you could tell me- do you feel that there is a connection between your symptoms/pain and your thyroid condition? Is your thyroid enlarged? I, too, have many classic Eagle's symptoms, but unlike many here, I have a very enlarged (4x3 cm), multinodular thyroid nodule on my affected side with significant hyoid bone pain. For countless years I have been given the "all-in-your-head" attitude by doctors, none of whom think my thyroid is an issue. I have spent all I am willing to spend on crappy, in-the-box thinking doctors and have not pursued diagnostics in several years since the last one fooled me into removing a perfectly healthy salivary gland. Since then, I have done a fair bit of research into stylohyoid-hyoid-thyroid cartilage anatomy, but have not been able to determine if the enlarged thyroid is a primary or secondary factor in my pain (as the lymphatic drainage of this region is through the thyroid gland). I would love to connect with people who have Eagle's or related symptoms who also have thyroid pathology. Please let me know if you have any thoughts on this. And if you have already gone for surgery, I pray it has gone well for you!
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Dr samji requested a CT without contrast. Opinions?
That has always been his āmodus operandiā. He is very good at looking at the angle of growth & determining which styloid needs to be removed first or is most problematic. I had terrble pain from my left styloid & begged him to remove it first but he was insistent on removing my right one because of the angle it was growing & because it was thicker. As it turned out, I was having vascular symptoms from the right one which werenāt apparent at the time of my CT scan. I say kudos to him for his wisdom in making that choice.
He does not classify vascular vs. regular ES so has no need for a CT w/ contrast. Itās all just ES to him. He is a skull based surgeon & does excellent work, leaving a very minimal scar. He did both of my surgeries & I would refer anyone to him!
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I called and talked to Kim [Dr. Samjiās assistant] and asked if I could send my CD of my CTās [2] to Dr Samji and ask him to look at them and see if he could use them as is instead of getting another dose of radiation having a 3rd CT the way the Dr perferred. He could use the CTs I had [even though they werenāt done his preferred way]. I used Dr. Samji for both my surgeries and am happy I did.
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Thatās great! What was the healing time? Just wondering how long I would need to stay in California after surgery before going back to Florida.
Dr. Samji does his ES surgeries on Mondays & requires you to come the Friday before for a pre-op check. He asks that you stay till the following Friday so he can do a post op check-up. You should plan to be in CA for about 8 days. There are a lot of VRBO, AirBNB & HomeAway listings in this area which are less expensive for extended stay than a hotel.
Healing generally takes 2 weeks plus. In 2 weeks you should feel relatively functional. By the end of 2 months you should feel pretty normal again. Nerves can take up to 12 months to heal & post op residual nerve pain/tingling in your face or neck should not be unexpected. My experience says itās far less uncomfy than the ES symptoms & much easier to deal with.
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