Hello,
Approximately a year ago i started having pain in my neck and ringing in my right ear with a feeling like my ear was full. I went to several doctors, went through multiple courses of antibiotics only to come up no better than i was previously. No one was able to figure out what it was. I had a brain MRI which showed nothing and insurance wouldn’t approve another MRI. Then on 9/23/16 I developed bells plasy in the right side of my face. I then had 2 more MRIs and a ct scan which all showed I have a calcified stylohyoid ligament on the right side. The calcification is almost the entire length of it. The doctors have all said they dont think this has anything to do with the bells palsy but I’m suspicious, i feel there has to be a connection. Anyway, the ENT has said there is evidence to suggest eagles syndrome, but he cant definitively say thats why im in pain or thats why i have the ringing. He said they could either do surgery or try a non invasive treatment, which he would suggest because he cant guarantee surgery would improve anything. He started me on gabapentin and so far it is managing the pain very well, but I still have ringing in that ear and crunching that i can hear when i open my jaw wide. The pain although under control now was pretty bad. I could feel it just up and to the right from my hyoid bone and underneath my right ear. I forgot the gabapentin a few weeks ago and i noticed it hurt a lot to swallow, like a stabbing in my throat. I dont know what caused this or if it will ever go away, but i have to wonder is there anyway to reverse the calcific tendonitis? I’ve read it can be caused by a deficiency in magnesium, vitamin D or vitamin K2. I am going to try taking some supplements of those for a month or two and see what happens. I figure if i can reverse the calcification it might stop the ringing and other symptoms. I really dont want the surgery but I somehow dont think the gabapentin will make it go away. The ENT said in 6 months he wants to try to taper me off the gabapentin and see how i am, but I somehow think the pain will just return.
Hi gspector!
Welcome to this wonderful site! If your stylohyoid ligament is calcified & you have pain, you definitely have Eagle Syndrome. There is much information in the Newbies section (found when you click the “HOME” tab above), and of course, we encourage you to read through as many of the old posts (FORUMS tab above) as you can to see what other people’s symptoms are (or were pre-op).
ES is a frustrating critter as there are common symptoms among ES sufferers, but there also tend to be symptoms unique to each individual. The symptoms you listed for yourself are among the more common. Sadly, there is no way to “de-calcify” bones. The only real cure for ES is surgery. I have had two ES surgeries done extraorally - through my neck as opposed to intraorally - through the throat behind the tonsil. Having my elongated styloids & partially calcified ligaments removed has given me back my life. Living with the myriad symptoms of ES on a daily basis can be intolerable.
GOOD NEWS!! You happen to live in an area where there are several excellent ES surgeons. Below is the name of one particular doctor who has probably done the most ES surgeries in the eastern U.S.
Dr Cognetti**
Philadelphia
Thomas Jefferson University Hospital
215 - 955 - 6760
Jefferson Health - Greater Philadelphia & South Jersey Region ofessionals/david-m-cognetti
If you click on the Doctor Info link found on the Home page, there are some specific doctor recommendations you can read.
Here is the link to the Doctors List:
http://forum.livingwitheagle.org/t/updated-doctor-lists-5-10-16/1281
I’m glad you’re getting pain relief from the Gabapentin, but sadly, as you noted, your pain will return when you stop the medication.
Please feel free to ask questions & by all means, keep us informed about your condition as time passes. We are here to support you.
I second what Isaiah said!! Your symptoms are typical of ES; I think there have been a few members who’ve had Bells Palsy. I didn’t have the pain on swallowing, but the ear fullness and tinnitus I had, and nerve pain, which you obviously have as the gabapentin is helping. It won’t go away by itself, but if you don’t feel ready for surgery/ don’t want it, then at least gabapentin can keep it under control for you. Some members have also found Lidocaine or steroid injections into the area help with the pain- again it doesn’t ‘cure’ the problem, but keeps pain at bay.
There doesn’t seem to be an obvious cause with everyone, but there does seem to be some research showing it’s linked to metabolic disorders; alot of members have problems with calcification in other areas, and certainly Vit D issues seems to be quite common amongst us.
If you can with insurance, it’s definitely worth getting a 2nd opinion from someone who is experienced in treating ES. I was told that surgery was far too risky and wouldn’t be worth the risk by the first doctor I saw, but went on to have surgeries both sides with a very experienced surgeon and feel tons better! Surgery is not right for everyone, and doesn’t always have great results for everyone, but removing the calcified ligaments or elongated styloid processes is the only thing which will ‘cure’ ES. The chance of getting good results from surgery is increased by seeing an experienced doctor.
Welcome!
I just had the surgery 2 /12 weeks ago and am planning to have my next ASAP
I too am on Gabapentin [900 mg/day] for nerve pain I had fullness in one ear and jaw pain on that side and tinnitus on the other side [yep I’m bilateral] along with several other issues. I had vitamin deficiency too- D B12 & Fe. I am happy I had the surgery, don’t get me wrong I was nervous until I awoke fine, but I am definitely planning to correct my other side right away. Perhaps you can see an ENT experienced with Eagles [like Jules suggested]…It made a huge difference for me.
We are all here to help, there is a lot of great info and personal stories on here that I found very helpful to read.
Let us know if you have any questions
Seamom
I live 2 miles from Dr. Cognetti’s office at Jefferson U. I am contemplating visiting him. I dont have an elongated process though, i have a calcified ligament almost the entire length. My current ENT showed me the CT scan and showed me what to look for and how almost the entire ligament shows up white. He said this likely has been happening for a while. He also said it seems like i have ES, but its hard to say because only 4% of the population gets it, and only 4% of those are symptomatic. I’m inclined to think i have it, i actually found eagles syndrome well before the CT scan reading a case study online and my physician said i dont necessarily think you have that, then the CT scan and MRI came back and he was like…so it seems from the report that you have calcification of my stylohyoid ligament which suggests eagle syndrome. He wanted to put me on carbamazapine, but he referred me to an ENT who decided to go with gabapentin. I dont know if the ligament can be removed…i guess all the more reason to see Dr. Cognetti. I’m terrified of surgery on my neck or head. I’m equally terrified of having to worry about bells palsy the rest of my life because of this. All the doctors ive seen have said they dont believe the bells palsy is related to my ES, but I am skeptical…no matter how many doctors (5 now) have said its not related…The bells palsy didn’t happen until my ES flared up really bad one day. I cant see how they arent connected. My bells palsy went away like 98%, but there are still some facial things that i can notice that may never go away. I’m a trumpet player and i couldn’t play at all when my face was half paralyzed, i dont want to go through that again, because next time i may not fully recover…but with ES, it could conceivably happen again… The ringing in my ear is really annoying too, and although its not effecting my hearing…id really like it to go away. I’ve been taking magnesium, K2 and D3 supplements and ive noticed the crunching and popping noises i used to hear when opening my jaw have mostly gone away. I dont know if its a result…i’d like to think its helping and maybe one day will go away, but its probably just wishful thinking.
Hopefully Dr Cognetti will be able to give you some good advice- calcification can’t be reversed. I think there have been a few members who’ve had Bell’s Palsy which they believe is related to ES; I know that Isaiah 40:31 has. No-one likes the idea of surgery- initially I thought no way would I have it done, it seemed far too risky. But then if the symptoms get worse, you get to the point where your quality of life is being affected so much you realise that the risk is worth it. And usually it pays off! Surgery is a personal decision, and everyone is different, but if it helps, it was nothing like as bad as I thought it would be, and I’ve had both sides done.
If you see the Dr Cognetti, go prepared and take a list of questions with you, which hopefully will help with your concerns.
Thinking of you, and let us know how you get on.
ES is a diagnosis for calcification of one or both stylohyoid ligament, OR elongated styloid process(es) OR a combination of the two (elongated styloid(s) & calcified ligament(s). I had both. My s-h ligaments were partially calcified & my styloid processes were elongated. My surgeon cut the styloids back as close to my skull as possible & removed my ligaments. The s-h ligaments help slightly w/ swallowing. Some people don’t notice they’re missing after surgery & others have mild swallowing issues for life which are better by far than living w/ the pain & other symptoms of ES.
Bells Palsy is caused by a virus & the treatment for it is an antiviral medication & steroids to reduce the nerve inflammation the virus causes which in turn cause the facial (eye/mouth) droop. An elongated styloid or calcified ligament can press on & irritate the nerves, which affect the mouth/tongue & eyes, & can produce symptoms similar to BP. Steroids might help the situation, but the antiviral medicine would be no help in this case. Jules mentioned that I had BP symptoms w/ my ES which is partially true. I had problems w/ partial paralysis of my tongue and mouth - speaking, swallowing & eating were quite challenging. These problems did resolve after ES surgery, but it took many months. I still have slight swallowing issues and once in awhile speaking is more challenging but compared to what it was, I consider myself cured.
I vote for you to see Dr. Cognetti. It will be time well spent.
I hope this info is helpful.
I visted Dr. Cognetti this past last Tuesday. Dr. Cognetti told me that based on my CT scan, I have one of the thickest styloids hes ever seen. He said I’m easily in the top 5. He said my styloid measures about 5.5cm on the right side only. The left side looks good. He said that he doesn’t normally speak this definitively, but based on the scan, he thinks 90% that surgery would relive some of my symptoms almost completely. He said that ES is usually a diagnosis by exclusion, and is usually diagnosed only after you eliminate other causes. He said in my case, the scan shows clear enough that my pain is most likely due to ES. He said the motivating factor for me to get surgery shouldn’t be because he tells me to, it should be because I want to do it and to let him know what decision I reach after I’ve had time to think about it. I told him I was confused, is the ligament calcified or is the styloid elongated? He said, to put it bluntly, you no longer have a ligament, its literally one solid mass and whats unusual is that he can feel it from the outside just by poking around in my neck. I told him I know i was able to feel that too, but everyone kept saying I dont feel anything I dont know what you’re talking about. He said no you can definitely feel it from under your ear all the way to the hyoid bone. He said that I am not in danger as it is not pressing on any arteries or veins, and it is not close enough to compress my vocal cords. I asked him if the bells palsy was related and he said very unlikely. He showed me on the CT scan where my facial nerve passes through relative to the ES and explained his reasoning. He said with surgery he feels most if not all my symptoms would resolve almost completely, however, he has only seen mixed results with the ear ringing, so he cant say if that one will improve. We talked about the surgery a little bit. He said he would need to make a larger incision than usual for me because of the size of the styloid and he said usually he can just apply pressure with his finger to break the styloid and remove it, but in my case, he will probably have to cut it and it would most likely take closer to 90 minutes instead of the usual hour. I asked him about recovery and he said most people tolerate it well with mild to moderate discomfort post op and that since I work in IT i’d probably be able to work again after a couple of days maybe a week.
I’m mulling everything over right now. Surgery on my head/neck terrifies me. I was terrified about my hernia repair 2 years ago and that wasn’t even close to my head. How has the recovery been for people on here? I have a lot of thoughts and questions relating to other peoples surgery experience. I’m not in a rush right now because the gabapentin seems to be keeping the pain in check, but obviously, I dont want to take it the rest of my life if I dont have to.
He said to let him know what I decide either way. He said he thinks, at some point, I will want the surgery. Maybe not in the immediate future, but he thinks I will eventually opt for it.
Well it’s great that Dr Cognetti was able to confirm ES and feels that surgery is an option, but totally understand that you’re nervous! It’s a personal decision for everyone as to whether the pain and symptoms are bad enough to have surgery, you get to a point that the symptoms outweigh the risks…
A few points to consider:
- most people find that surgery is not horrendous, and if you look on here at how many members go on to have second surgery, then I think that shows- if it was really bad then they wouldn’t go through it- me included! There have been a few members who haven’t had great results, and a couple who’ve had shoulder nerve damage, but on the whole surgery helps.
- Dr Cognetti is a very experienced surgeon, so you would be in good hands.
- You have his expert opinion that he thinks you would benefit- often doctors are cautious about saying whether you’re likely to benefit.
- If gabapentin is helping, it shows that you have nerve pain- so at least one nerve is being compressed or irritated by the styloid. The longer you leave surgery, the more the nerve is being affected. After surgery I still have to take amitriptyline as I presume that the nerve has permanently been damaged. So if this is the only symptom you have, you could find that it doesn’t get resolved with surgery! So that could be a for or against! And also as you say you perhaps don’t want to keep taking medication for ever, but you could find that it doesn’t work as well in the future, it does sometimes happen with these pain medications…
- Is Dr Cognetti going to be at that hospital for a while into the future, will your insurance cover this operation in the future- how would you feel if you put it off only to find in a year or two that your insurance now wouldn’t cover the op and you can’t get it?
I was in two minds for a bit after the first surgery as the second side wasn’t so bad, but what swayed me (as well as the fact that the surgery wasn’t too bad) was the thought that the surgeon might leave or I might not be able to get a referral to him again in the future. I don’t know if this could happen, but it’s something to think about- one of the Canadian doctors who did ES surgery has stopped to concentrate on cancer surgery…
Sorry this is quite long, and I hope not too biased in favour of surgery! I have had surgery with a UK doctor, so can’t speak about Dr Cognetti, but certainly my experience of surgery and recovery was that it was nothing like as bad as I expected, and I’m over the moon with the results!
There’s lots of posts about what to expect post-op, which you can search for, if you want to see what people had to deal with afterwards, but feel free to ask any more questions!
gspector - I went into both of my surgeries with only great expectations of having symptom relief when I was recovered. I must say that my hopes have been realized and though I still have a little numbness & intermittent neck pain, my life has been restored. I won’t beat around the bush…I’m a stonrg advocate for surgery. The majority of people who have been operated on by Dr. Cognetti sing his praises.
FYI - I do have a problem w/ ringing in my ears which I had for years before ES surgery & it hasn’t changed post op. I’m guessing my tinnitis was not ES related.
I agree w/ Jules. Choosing surgery is a big decision, but she made some very valid arguments for considering having surgery sooner rather than later if you think you’ll sway in that direction.
I am one of the people heading off for surgery #2. Was scared going into it, you bet…it is after all in a delicate area. I can say like Isaiah, that my more severe symptoms are gone [some of which doctors told me were not related to ES]. Wouldn’t it be nice if your Bels Palsy was gone after surgery like a bonus? There are no guarantees…ONLY you can make this choice!
Good luck and look for my post-opp report sometime next week,
Seamom