Hi all, wanted to share my story and vent. Back in Nov 2016 I began getting chronic migraines, I knew from the beginning my jaw was causing them. I knew I had TMJ from having braces years ago. I went to a tmj speacilist who said I should do PT and that later we will look into MRI of right side but there was no bone on bone findings from panaromic. Neuro put me on effexor and flexiral. Fast forward to the middle of Jan this year. All of a sudden I woke up and the pain in my jaw changed. I felt like I had slept wrong or jaw was out or place. Half way through day the pain was so bad I called my dentist and begged for him to see me, I thought I must have a deeply rooted tooth infection. My dentist took a panaromic and double checked in mouth. He asked me to look at panaromic and said look this isn’t my area but I remember this from school, your styloid looks calcified which could be a sign of eagles syndrome, and your symptoms allign with that as well, you need to go to ENT. The following day I went to a local ENT who’s well known in area I live in, he barely examed me but I made sure he check right ear because now I thought it must be a bad ear infection. He said no ear infection and he looked at panaromic from dentist and said yes it could be eagles but no doctor in area will know for sure I need to go to Penn or Jefferson. I left in tears and in uncontrolled pain. Pain felt like I was birthing a metal rod from neck, to lower right jaw line to ear and neck, as if I could grab this rod out of my face. Pain was constant and relentless. Not to mention pain from tension in neck upper back muscles. I called my cousin who’s a doctor while leaving ENT and told her what’s been happening, she never heard of eagles and quickly looked it up, she said call your neuro and tell him everything and that you need gabapentin to control pain. I did as she said and my Neuro listened and prescribed the gabapentin and told me to come in next day to discuss. Next day I was awaiting phone call from either Penn or Jefferson from referall and didn’t hear anything so I called Jefferson, the nice woman said there was no referral yet but even if there was I wasn’t in system so let’s put my info in, I told her I need a doctor with experience in Eagles syndrome and asked if they had anyone, she said yes his name is Dr. Cognetti, I asked if she was sure and she said yes. I later found out he is the one to go to which must be some sort of divine intervention. Within 2 weeks I was at Dr. Cognettis office with new MRI scans with and without contrast. Dr. Cognetti came in and we talked and I asked if he needed to see panaromic as well he said no he saw that my styloid on right side was allongeted and calcified and uses the MRI to see so. He then told my boyfriend and I he does not diagnose eagles until and if the ligament is removed and symptoms are gone, that I am a complex case. He then went into my mouth and said to a student that my styloid was pressing on tonsils. He suggested I come back in two months and do PT in meantime, I became emotional and explained the pain. He was very nice but told me to come back. Fast forward to almost month later, Neuro had been helping so much to treat and try to control pain, I feel as though I can barely swallow, glands inflamed, facial pain extreme, ears hurt… I called Dr. Cognettis office and explained I’ve been trying to be good and do as he instructed but I’m at wits end. They are now going to see me for reevaluation this Wed. I asked his nurse did he say anything else and she said no… I said I’ll be there. I’m so ready feel better.
Hi all, wanted to share my story and vent. Back in Nov 2016 I began getting chronic migraines, I knew from the beginning my jaw was causing them. I knew I had TMJ from having braces years ago. I went to a tmj speacilist who said I should do PT and that later we will look into MRI of right side but there was no bone on bone findings from panaromic. Neuro put me on effexor and flexiral. Fast forward to the middle of Jan this year. All of a sudden I woke up and the pain in my jaw changed. I felt like I had slept wrong or jaw was out or place. Half way through day the pain was so bad I called my dentist and begged for him to see me, I thought I must have a deeply rooted tooth infection. My dentist took a panaromic and double checked in mouth. He asked me to look at panaromic and said look this isn’t my area but I remember this from school, your styloid looks calcified which could be a sign of eagles syndrome, and your symptoms allign with that as well, you need to go to ENT. The following day I went to a local ENT who’s well known in area I live in, he barely examed me but I made sure he check right ear because now I thought it must be a bad ear infection. He said no ear infection and he looked at panaromic from dentist and said yes it could be eagles but no doctor in area will know for sure I need to go to Penn or Jefferson. I left in tears and in uncontrolled pain. Pain felt like I was birthing a metal rod from neck, to lower right jaw line to ear and neck, as if I could grab this rod out of my face. Pain was constant and relentless. Not to mention pain from tension in neck upper back muscles. I called my cousin who’s a doctor while leaving ENT and told her what’s been happening, she never heard of eagles and quickly looked it up, she said call your neuro and tell him everything and that you need gabapentin to control pain. I did as she said and my Neuro listened and prescribed the gabapentin and told me to come in next day to discuss. Next day I was awaiting phone call from either Penn or Jefferson from referall and didn’t hear anything so I called Jefferson, the nice woman said there was no referral yet but even if there was I wasn’t in system so let’s put my info in, I told her I need a doctor with experience in Eagles syndrome and asked if they had anyone, she said yes his name is Dr. Cognetti, I asked if she was sure and she said yes. I later found out he is the one to go to which must be some sort of divine intervention. Within 2 weeks I was at Dr. Cognettis office with new MRI scans with and without contrast. Dr. Cognetti came in and we talked and I asked if he needed to see panaromic as well he said no he saw that my styloid on right side was allongeted and calcified and uses the MRI to see so. He then told my boyfriend and I he does not diagnose eagles until and if the ligament is removed and symptoms are gone, that I am a complex case. He then went into my mouth and said to a student that my styloid was pressing on tonsils. He suggested I come back in two months and do PT in meantime, I became emotional and explained the pain. He was very nice but told me to come back. Fast forward to almost month later, Neuro had been helping so much to treat and try to control pain, I feel as though I can barely swallow, glands inflamed, facial pain extreme, ears hurt… I called Dr. Cognettis office and explained I’ve been trying to be good and do as he instructed but I’m at wits end. They are now going to see me for reevaluation this Wed. I asked his nurse did he say anything else and she said no… I said I’ll be there. I’m so ready feel better.
So sorry to read that you’re in so much pain, but glad that there’s light at the end of the tunnel, & you were able to get Dr Cognetti to see you earlier. He is very experienced so I’m glad that you were able to see him- alot of members have to keep visiting doctors for years before they find someone to help.
Feel free to vent on here, & we do all understand. Hope that you get some help on Wednesday- hang in there. Sending you a hug 
@Jules Thank you so much! Dr. Cognetti said the same thing, how many go for years and I would be the first to get to him that fast. I’m hanging in there!
@CadyD
I’m so sorry to hear about all of your trouble, & wondering where you are. I’m in Central Bucks County. I use Abington Hospital for all of my medical needs, and I trust them. My new dentist diagnosed me & our daughter, who is 33, (I’m 64) last October. I’ve been dealing with several other bizarre things since then that have taken priority. However, my research has led me to the fact that several of my other things may be caused by or aggravated by the Eagle Syndrome. Everyone I’ve mentioned ES to says, “I never heard of that”. This includes my ENT, PT, Neurologist, Rheumatologist, PCP, radiology techs, everyone. Fortunately, my Rheumatologist, PCP & Neurologist have all researched & agree that I have it & have offered to authorize whatever Dr Cognetti asks for. I just need to get this Trigeminal Neuralgia & Lupus flare under control. Then I can concentrate on getting ready for Dr Cognetti. I just started 5 mg of prednisone per day from my Rheumatologist, & 200 mg of generic Tegretol twice a day from the Neurologist for the TN. Meanwhile, I’d like to warn you about the gabapentin. I was put on it in fall of 2014 for a concussion. Most Drs don’t know this, but it can cause swelling & edema, as it did to me. I couldn’t put shoes on for months, or walk. Then it was time to refill, & I decided not to because it wasn’t helping the concussion. I weaned off of it as directed, & all of the swelling disappeared immediately. Of course, meanwhile, the edema sent me to a cardiologist & blood pressure medication. I’m off of the BP meds because I lost a lot of weight & kept fainting because my pressure was too low. My biggest fear is falling & getting concussion #6 &/or broken nose #4.
When I first called Cognetti’s office, the receptionist told me that the way he works is thst the patient has to get all of their medical history & tests together & mail them to him. Then he would review everything & get back to you. She didn’t say what tests need to be done, & my Drs don’t know, but are ready to order them. Another question, does Medicare cover the surgery for ES?
Anyway, we may be near each other, if you want to get in touch.
@Royce53 Thank you, and I’m sorry to hear you are having trouble as well. I am in Berks County area, outskirts of Reading. Yes, that same thing happened to me when mentioning Eagles to mostly everyone, or the few that heard of it only did once and did not have much information. I made sure I had an MRI with and without contrast of soft tissue neck and head, my neuro ordered the scans, and when getting them completed I also made sure to mention Eagles syndrome to the radiologist who luckily had already looked it up and knew what she should be doing. Before my appointment I had my results from MRI, which my neuro also wanted to check again to make sure no other abnormal things were shown in the brain, or anywhere else from previous scans as well. I obtained a disc from my hospital with those scans and any previous scans along with recent doctor reports/summaries to bring along to my appointment. I do know that Dr. Cognetti’s office prefers these things are sent in ahead of time, but I did not know that information prior since I called and made an appointment through Jefferson’s main appt line. Thank you for the information regarding the gabapentin, I make sure I review any and all information that I can on medication before taking it so I did see that that could become an issue. I am doing well so far on the medicine, besides the fact that it only works a few days after increased, and now I am at max dosage. Plus the medicine makes me very tired, and only dulls the pain, bringing it from a +10 to about a 7-9.
I would suggest you make sure you have the MRI with and without contrast of soft tissue neck and of the head. I am unsure about Medicare coverage, I believe it should, but make sure you call your insurance and ask once you get to that point.
Hope you get some answers and relief soon!
Cady’s advice is very good, but would just note that an MRI isn’t the best scan to show the styloid processes- a CT is the best scan to have. A CT with contrast will show if there’s any compression of the blood vessels. (MRI’s are often done as well as they’re useful for soft tissues, so are helpful to rule out other conditions.) As Cady says, amke sure any scan is evaluated for ES.
@Jules thank you! Yes that is correct a CT scan, that is what I brought along with me not MRI scans, I’m sorry and thanks for catching that. @Royce53 pulled up mychart and I had a CT scan soft tissue neck with and without contrast and CTA head/neck.
Hi Royce53,
Medicare does cover ES surgery. I think it has to be billed as brain surgery though. Dr. Cognetti’s office should know. If not, I know Dr. Samji’s office knows what the right surgical code is. It’s a different billing code than for non-Medicare patients (my insurance was billed for a "Mini-craniectomy). Additionally, Medicare requires that the surgery be done in a hospital w/ at least one overnight stay. Some ES surgeons do their surgeries outpatient so you can go home the same day of surgery. This saves money for you & allows you get back to a more private place sooner to begin your recovery process.
Thank you for your reply. I’m sorry it took me so long. I’m having so much pain from the Trigeminal Neuralgia. I know that it could be connected to the ES. My brain is just so dysfunctional now to do anything. I can’t think or do anything but try to sleep. The information you shared is very helpful. I’m trying to make a list, so I can get my Neurologist to order the tests. I’m hoping that I can resolve 2 issues at once.
Thank you, I’ll get on that!
You do stand a chance of having your trigeminal neuralgia go away or at least become less of a problem when your styloid(s) are removed. The cranial nerves share space w/ the styloids & some tend to be more affected by elongated styloids &/or calcified ligaments than others. It’s kind of “the luck of the draw” as to what gets pinched/irritated as we are each put together slightly differently.
Isaiah_40_31
Thank you so much for your reply! I feel like I’m in a chicken or the egg scenario. So many of my symptoms have been part of my life for years. Everything was always thought to be part of the Lupus, or the Fibromyalgia, or the Spinal Stenosis, the concussions,
etc.
When I had the blood clots in my leg in 1998, the issue was, let’s get them to stop! After, it was, okay, now why did I get them? It took years & endless specialists to finally get referred to a rheumatologist to put all of the strange things that had been
happening to me for years, together into one puzzle, & diagnosed. Up until that point, everything had been treated individually. I’m hoping that this situation could solve a lot of my discomfort & dysfunction. I want my life back. Each day the ES & TN symptoms
get worse. The pain level, the frequency, and the duration increases. I’ve been dragging my feet because I don’t want to set myself up for disappointment. There’s been too much of that all these years, & I don’t have the fight in me that I’ve had in the past.
The timing of the 2 new diagnosis of ES & TN is surreal. I was literally leaving the hospital after having the special MRA when our daughter called & said she’d just been diagnosed with ES, that it was hereditary & we share so many symptoms. I’m doing a lot
of praying, & will start my process during this next week.
Thank you again for your help & encouragement. I have to get battle ready & get this done!
Royce53
I’m so sorry for your years of suffering. I’m glad you’ve had some diagnoses that are helping you to find some measure of recovery & relief from the other body struggles you have.
There hasn’t been a proven hereditary connection with ES, BUT there has been at least one other member on this site who found 2-3 of her children had it after she was diagnosed (she has a large family) which absolutely indicates a hereditary component in my mind. I was told my first cousin had ES, but when I quizzed him about it, he’d never heard of it, so my informant was misguided.
The fact that your ES was diagnosed so close to your TN also seems less like a coincident to me & more like a “cause & effect” scenario. If you go into surgery hoping for the best but not expecting to be completely cured then any improvement you get will feel like a victory & not a disappointment. As you’ve probably read over & over again on this site, nerves don’t heal as fast as other parts of the body. It can take several months to a year for nerve pain or numbness to resolve. The length of time a nerve is impinged may also be a factor in how quickly it heals. Many people, however, experience immediate relief after surgery. I’ll be praying for that for you.
It’s great that you live in a state that has a well known & experienced ES surgeon. I hope your daughter is able to have hers taken care of near the same time you do. That way you can recover together! Misery loves company, you know. 
Please keep us posted as to your surgery date when its set.
Thank you so much again! Yes, I agree, a positive attitude is the first step for success. I need to get myself & my head in that mode. I’m working on it. The nerve recovery issue is one we’re very familiar with here. I’m hoping to time everything to coordinate with being able to relax in the mountains this summer. Hopefully surgery done before Memorial Day, or June 20th at the latest. Our daughter wants to wait to see how I make out. Fortunately she is off SSD & working full time & she hasn’t as many issues as this old bag of bones. Thank for your prayers & help. I am so happy I found this group & all of you!
Your daughter is likely to have a completely different surgical experience than you as her styloids/ligaments are probably angled differently & not the same length as yours & thus the nerves/vascular tissues being affected could be totally different. It’s good for her to wait on surgery if she’s not being disabled by her symptoms, but making her decision about surgery based on your outcome won’t necessarily be the best way to judge what her outcome might be.
Your surgical & recovery plan sounds good! I hope you are able to get scheduled & proceed as you plan. I want to relax in the mountains this summer! That sounds like a wonderful way to recover.
