Hi, I believe my wife has Eagle Syndrome. She was Dx’d with GPN and has had 2 MVD’s that has not fixed anything. All of her pain started weeks after her tonsils were removed. The symptoms of her pain and everything else matches Eagle’s perfectly. When I asked her neurosurgeon about it he was almost offended that I could possibly question him and told me real fast that although her symptoms and timing of the pain fits he does not believe its Eagle’s because it is very rare. He never did a CT of her neck. I do have her MRI which I believe shows classic Eagle syndrome. I am attempting to get a CT via an ER doctor friend and I am sending it to Dr. Samji in California. My question is does anyone know of a doctor in Arkansas? I still believe I want to see Dr. Samji, but do to my wife having Arkansas Medicaid I am not so sure how that insurance works.
She doesnt have to go through all that radiation from a CT scan. I eork at a dental office and my dentist saw it on my xray they call a Panorex. Just take her to the dentist and they can easily see it on there.
I have read that. She is actually in school for dental assisting and I told her to get one at her school. The only doctor I can get to answer me back in Dr. Samji in California and he wants the CT of the Neck. I am a paramedic so I have a few hook ups when it comes to talking to doctors, but we can not get the doctors that matter to even order anything or refer us to the ENT in the state that treats it. So my only restore is paying out of my pocket to go to this doctor in California. I have literally been told that is to rare for them to consider it by the doctors we have been dealing with here.
I understand. Its rough…I have it too and just became symptomatic. I cant imagine the additional things to come. I too hope I can find someone here in NC. I wish her well.
I’m not sure if there’s a doc in Arkansas- not sure if you’ve had a look on the latest doctors list- here’s a link to it: http://forum.livingwitheagle.org/t/updated-doctor-lists-9-19-16/1547
I’m UK but hopefully others in the US can give you advice about the system! But Dr Samji is good, and if you can at least get him to look at the scan when your wife has it then you’ll have an idea if it’s ES or not.
Other avenues you could explore are different types of surgeons- skull base/ otolaryngologist surgeons work in that area so might be able to help.
I personally think that it’s way more common than the doctors think, but it’s under-diagnosed.
So the number we usually hear is that 4% of the population have elongated styloids. The US right now has over 320,000,000 people. Four percent of that is 12,800,000 people. So almost 13 million people in the US alone most likely have elongated styloids.
Maybe you can tell them about the forum and about how a lot of us have a hard time getting diagnosed because of the unfamiliarity with Eagles.
I hope you can find a doctor in Arkansas that can help your wife. I am going through the same thing right now, my ENT also thinks I have glossophayrngeal neuralgia and my symptoms started after my tonsillectomy last October, but I think it could be eagles syndrome too. I had a CT scan ordered, but they didn’t measure my styloids and my ENT thought everything looked normal. He wants me to see a doctor more experienced with styloids since my right styloid looks like there is a gap (which could be cartilage) and a neurologist for GPN. I sent my CT scan to Dr. Samji and I am waiting to hear back, he is out the country right now for 3 weeks. Please keep me updated on what your wife is going through, it sounds like we are going through the same thing.
It looks like there are 3 doctors in NC that do/have done ES surgery. See the post above from Jules that has the link to the current ES doctors’ list. It will be very helpful for you.
slovesj1216 - my post was directed to you. Sorry I didn’t make that more clear.
Well we got an appointment with an ENT in Arkansas by the name of Dr James Suen at UAMS in Little Rock not sure how many times he has did the surgery but his nurse says he is familiar with it and has done several.
Hi all, could someone explain how they made contact with Dr. Samji and arranged for him to receive your CT scans? Did you just call his office and ask if they would look at it? Did they request it from your radiologist or did you have to arrange for your doctor to send it? Does he charge to review your scan? Thanks a bunch.
Hi bkerea66,
I think the best thing to do is to call Dr. Samji’s office and ask what the current procedure is. I think it’s changed a couple times since I’ve seen him. You will most likely have to send the disc of your CT scan. You can get a copy from the place that did it. Just go in and ask for a copy. At my hospital, they gave me a cardboard disc holder that’s made for mailing. You can always ask them if they’ll send a copy to a doctor’s office for you.
As I recall, he does charge, but I’m not sure how much. They can tell you when you call his office. When I saw him, I just made an appointment and went to see him in person. It was a long trip, but I was pretty desperate. But I think he does the phone consultations in a pretty timely manner, so it’s certainly easier to do it via a phone conference.