just returned from Kentucky .
Dr Okeson at university of Kentucky oral facial pain clinic. Learned so much.
Just bc I had an elongated styloid did not mean that the constant 24/7 pain was eagles syndrome.
They did nerve blocks in my mouth and if I still had pain it would have been eagles syndrome.
I had the pain in my mouth but failed the other other two critieria . Jabbing pain when turning head . I just have tightness.
I learned that the pain on the outside of my face was muscular and the pain inside ( that tooth pain that is throbbing is neurological).
My suggestion to anyone is get your three d sono and panexray but even with elongated styloid a and four years of bad pain 24/7.
Dr Okeson was the most competiant and best drs I’ve seen throughout my treatments etc… He made sure that we had a plan in place and helped us understand. He helped us understand that what I have is nerves gone haywire and not eagles. So gratful. Was treated with injections and such for two days and they will be raining my dentist fir inside and outside my mouth and face.
Please recommend Dr Okeson for the doctors to treat eagle syndrome. I cannot figure out how to on my phone.
I’m going to keep praying for all you with eagles syndrome.
They compared eagles syndrome to a bludging disc. Many people have bludging discs but they walk around without any symptoms. Many people like myself have elongated styloid a but on a few have Eagles syndrome.
More injections and anti seizure meds until the nerves settle down and stop giving wrong messages to the brain.
SoDone, I'm glad you're happy with the results and I really hope this is the right answer for you.
I'd like to point out however that I've had eagles and had surgeries that have helped me a lot. But I never had jabbing pain when I turned my head. I've never heard of symptoms that absolutely everyone has had. From my experience and from reading on the forum for the last several years, I'm not sure that what this doctor told you is true. There are various things I've heard doctors say that they believed were true for all eagles cases that really weren't true for all cases or were not definitive for eagles. With eagles, the styloids can grow in different directions, can be varying lengths and widths, and can affect a variety of different nerves. So I can understand how it can be so difficult diagnosing eagles because we can present with such a varied array of symptoms.
I had doctors at the Cleveland Clinic tell me I didn't have eagles because the styloid was compressing the carotid artery, while other people in the same situation have had other doctors tell them they had vascular eagles. This is just one example of different doctors saying different things. But in my case, even though the doctors told me I didn't have eagles on my right side, I convinced them to operate so they took the styloid out and I almost instantly felt 100 percent better.
As I said though, I really hope you got the right answer for your particular case.
Interesting. This dr Okeson explained it like many people have bludging discs but not all have symptoms. He said many people have elongated styloid and it has nothing to do with their symptoms.
I had a styloid mandibilar ligament block and it did nothing for my pain. If it had it would have been eagles syndrome. Also, I had nerve blocks in and out of my mouth and for a bit the pain was blocked. He said if my pain was still there it would have been eagles.
We are going to see if this dx of phantom haywire nerves, just like my second neurologist thought it was will calm and turn off pain receptors . We shall see.
I was heartbroken bc I want out of pain and surgery seemed like it would have been a great fix. Thank you for sharing. I hope they are right or I will be getting a second opinion soon.
I forgot to mention - Drs Cognetti and Samji are two of the most experienced doctors in doing Eagles surgeries. Dr Cognetti recently said something like you have to take out the styloid and then see what symptoms have been resolved. Dr. Samji told me that he goes by the science - he looks at the scans and determines from those, not the symptoms.
My husband saw Dr Okeson last year. Told us that his nerves we're haywire also. Sent us home with about 5 different medicines to try. We tried them all and we still have no relieve, my husband has been in pain for about 6 years now. We don't know where to turn for help. Told my husband over the phone last week he didn't have ES. I wish I could find someone that could help him with the pain. Any suggestion would be greatly appreciated
RJM, do you have a CT scan? If not, can you get one? - preferably one with contrast and if possible, a 3D one. Have them assess for styloids - usually you have to tell them so they know to look for them.
Then look at Emma's list for a doctor. Do a search for her list. You may have to travel to get one - seems like most of us have to travel.
RJM said:
My husband saw Dr Okeson last year. Told us that his nerves we're haywire also. Sent us home with about 5 different medicines to try. We tried them all and we still have no relieve, my husband has been in pain for about 6 years now. We don't know where to turn for help. Told my husband over the phone last week he didn't have ES. I wish I could find someone that could help him with the pain. Any suggestion would be greatly appreciated
heidemt , We have had several CT scans, not sure about a 3D one. My husband has pain in the neck, shoulders and OMG the pain he has in his jaws , he is also having a hard time swallowing. He is continually popping and cracking his jaws. Dr Okeson did say he has phantom nerve pain also. The thing is none of the medicines we tried have help. Is there some kind of surgery that can be done for the phantom nerve pain?
I was sent to my maxo dentist after Okenson started blocking the nerve pain with injections in and outside my mouth. Inside to block the nerve pain and different injection for the muscles in my cheek from clenching
. I was fitted with a plastic splint for topical medication in the tooth area that I have so much pain and given a cream to put up in there prior to inserting the med and then splint.
Dr Okenson knows what he is doing. I promise that. I was sent home with meds that I am not filling. It’s been a month. I keep getting injections that he and Dr Rojas taught my dentist. It is to stop blocking the signals. My pain goes away on one side of my face and returns. So we are stepping it up to weekly to block the phantom signal that says hey I’m in pain. I could be
One treatment or 52 treatments away from calming that misfire down.
I’ve been in pain 24/7 daily for 4-6 years. It’s hard on everyone. I was hoping that the elongated styloid meant that I had eagles syndrome.
Many people walk around w elongated styloids. Dr Okenson said surgery for my kind of pain that this could cause more haywire phantom pain.
Did he inject your husband and then have him turn his neck? If it was not radiating pain shooting type up to the neck through the head it is not eagles syndrome.
In Charlotte there is a head pain specialist at Novant neurology named Dr Gordon. He might be a good second opinion.
From what I have read and it disturbs me, dr congeti will remove the elongated styloid just because it’s elongated. I trust dr okenson. I’m not going to have any unessasry surgery.
The meds I’m on are a antidepressant 2x a day , triazadone and clonipin at night to sleep through pain. I’ve not been to my neurologist to fill any meds dr Okenson was going to switch bc I’m done w anti seizure meds and muscle relaxers. In four years non have worked (8 different kinds if each). I just am getting relief from these injections enough to have things livable. Still at a 6-7 on pain scale but better than the 8-9 that I had prior.
We went to the UAB Clinic in Birmingham, Alabama and saw Dr Louise, he gave my husband botox injection, also nerve block, the nerve block made the pain worse, the botox he couldn't tell he was even injected. He is on antidepressant. He goes to the pain clinic every 3 months for pain management. It's just so hard to trust any Dr.'s they all have different opinions and none if them seem to want to help. I really do think Dr Okeson is a good doctor, but sometime the pain is so much more than my husband can bare. I worry so about him, he has said so may time he's just ready to end it. He feels like a failure because he can not work. Being in the heat makes the pain ten time worse, not sure what heat has to do with it but he can not get hot, working in the yard is a major pain because he has to rest for couple day inside because of the pain. I have watched him for the past 6 years and its horrible to watch your love one suffer and there is nothing you can do for them. We have been on anti seizure meds also, we have tried all the nerve medicines also. We may try calling Dr. Okeson and see about injection. We have had injection in the neck before but they have not help either. Dr. Okeson said that caffeine and nicotine made the nerve ending worse, have you noticed that in your case. Thank you so much for just listening to me, it has helped me to know we are not alone in our struggles with PAIN>
RJM, did the CT scans show elongated styloids? If they did and he's having that much pain that sounds like pretty typical Eagles pain which hasn't been resolved with all he's been though, then I think you need to go to a doctor with experience in Eagles surgeries and have the styloid taken out.
Just to defend Dr. Cognetti, he doesn't do surgeries with no reason. In fact, he didn't operate on me I think because my pain was so different. But if people are symptomatic with Eagles type pain, he will take the styloid out. He has a very good track record too. But Eagles surgeries have cured some pain that people normally wouldn't have associated with Eagles. That's what Dr. Cognetti meant I believe when he said you have to take out the styloid and see what symptoms are resolved. I think he's seen normal type symptoms resolve, but has also seen some unexpected pain relief from symptoms that people didn't normally associate with Eagles.
I have pain that wouldn't normally be associated with Eagles which improved after Eagles surgery. Those little styloids can cause so much misery.
Heat definitely makes it worse. Long car rides and excersise giggles the pain and takes days to recover. All the Botox, occipital blocks, styloid mandibilar blocks, physical therapy … All aggravated the pain.
You are so not alone. Botox says it helps the nerves but really it’s a muscular treatment that is short term.
My pain started like tooth pain. I had teeth removed even though dentist said it was not a tooth issue. Does your husband have an area like this? A starting point?
Starting point was tooth pain,- he had 2 good teeth removed even though 2 dentist told him it was not his teeth. that was the being of 6 long years of pain. I will have to check out Dr. Cognetti, Dr Okeson said he did not have ES, but I think we need to get another opinion. He cracks and and chews on is jaw all the time, maybe chewing is not the right way to describe what he is doing. I don't think the CT showed elongated styloid, but not sure they were looking for that either. It has been about 3 years since he had a CT scan. Maybe getting another CT scan would help. Thank you so much for help, I can't thank you enough, just knowing we are not alone in this journey helps.
Hi guys. Just had my second styloid process removed. First one excised 2 years ago - very painful neural symptoms plus physical - throat, teeth, ear, neck, eye, sinus etc. Physicians got very frustrated - thought I was neurotic hyperchondriac. “Dr Google” eventually diagnosed Eagle’s Syndrome - ha ha! Confirmed by CT scan. Post op symptoms recur - scar tissue pulls on inner ear and neck. I have brilliant Physio/Chiropractor who does massage, sonar & dry needling - works well for me. Have to go back but hey it relieves the pain. With second styloid process (6.5 cm on CT scan) did not have the neurological symptoms like the first - just the physical discomfort. It came out on Friday (quite chubby! With meat on it - yuk!). The surgeon had to operate from the outside in - cut from my mid ear to my throat bone. Drain came out of the top of the incision - once empty went home. The previous scar is hardly noticeable. So all in all not so bad - these things happen. I would be very weary of radical treatments for related symptoms (known or unknown) without CT scan or MRI. Bless you!
RJM, yes, you have to tell them to evaluate for styloids when they read the CT scan.
But I think you would be able to bring the disc to an experienced Eagles surgeon and he could just see for himself. So you may not have to get a new one.
Get him to a doctor with Eagles surgery experience.
I was told in 1998 if nerve blocks worked it was ES and the GP nerve was being irritated. When I was offered it I was injected into area near left tonsil and pain went away for a few months. I think similar to the selective nerve blocks I get for sciatica.
So Done-- What are all your symptoms? from this site there are so many different ones and not everybody has them all-I pity the person who has them all.
Mine were-burning ear pain, inner ear infections, dysphasia , could feel bone in upper back of my throat and the area around it was the painful tender area, tongue pain.
Comparing disks and calcified cartilage hitting nerves..........
As for symptomology, I read somewhere that 4% have elongated styloids and 4% of them have symptoms. So out of 10,000 people 16 would have symptoms and they vary from person to person anyway. I had a 3.5 cm Right side and 7.5 cm left side. pain didn't change when I turned my head. My pain doctor was my best advocate to get my L styloid removed since I've been dealing with ruptured disks and have been on all sorts of pain meds but my ear, throat, jaw pain never went away-he said I'd been on enough pills and recommended removal. My disks were probably bulging for years but until they hit the nerve I had no symptoms. I assume if the styloid doesn't hit a nerve you won't have symptoms either.
But if they are long and you have unexplained pain I find it difficult to see a doctor rule out ES. All these other causes seem vague and more complicated than just having a foreign object in your skull, ear, throat area.
I've been dealing with this since 1989 in some form or another (pre-internet too-I spent lots of time in med libraries) so info. gets all blurry).
I hope you find a lasting solution what ever the cause is.
I think it's important to consider that ES MAY BE THE REASON that nerves "go haywire". The styloid process is very close to a nerve bundle that contains many of the nerves we ES sufferers have trouble with! Why don't MDs want to see this cause/effect? Instead, the ones that I have been to will attempt to explain the symptoms away with just about ANY other possibilty. Why is THIS ONE not just as plausible?