My daughter was just diagnosed on Thanksgiving 2013 via a CT scan done during a visit to the emergency room. We went to the ER because she was having extreme pain and vomiting.
We are still trying to get her in to see an ENT, but good luck finding one on a holiday weekend. The search will start tomorrow.
What questions do we need to ask since until very recently we never heard of "Eagle Syndrome".
Any help would be greatly appreciated.
Thank you
I'd recommend that, if at all possible, you visit one of the surgeons on Emma's list asap. It's worth the effort to seek out an experienced surgeon. My own experience was that inexperienced doctors mostly just wasted my time and discouraged me.
I'm so glad your daughter was diagnosed and I pray she'll find relief soon!
Wow…happy thanksgiving? :O You are fortunate that the ER found that-- kudos to those docs--! I second what eagle heart said; go for the known docs if you possibly can.
Hi! I am glad you found this website! I went six months without it and it was harder. Finding an ENT with REAL experience is hard. I am seeing an ENT with 40 years of experience that has two children that are also ENT's and he has only seen 5 cases. He is insisting that I travel to Ohio to the Cleveland Clinic to see a doctor that handles Eagle's Syndrome regularly, his concern is that the bone is in such a sensitive area with so much going on that experience is key. I agree. So I am going. Hopefully after the holidays. I don't know where you live, but on this website you can find a link to a spreadsheet that lists doctors with experience. I'm sure there are more than are listed, but the guy I'm going to see is on it. Take care, and good luck!
Linnea,
I went to the Cleveland Clinic in Ohio for my second Eagles surgery. Please be aware that they don't know that much about Eagles - not as much as Drs Samji and Cognetti for sure. The doctor I went to is on the list but I don't consider my surgery with him a real success. I'm in the process now of getting a revision surgery because he didn't take all the styloid out and I'm still having pretty bad pain. In addition, after my surgery at the CC, I was in very bad pain. It was by far the most painful of the three Eagles surgeries I've had.
Wow!
Thank you! What hospital are Dr. Samji and Cognetti at?
Dr. Samji is in San Jose, CA and Dr. Cognetti is in Philadelphia - I believe Thomas Jefferson Hospital. There's also a Dr. Forrest I believe in Ohio - I think Cincinnati, who several people have been to.
Found an ENT who will see her tomorrow 12-3. Any suggestions on what questions we need to ask?
Does he even know what Eagles is. The best thing to tell him is "Elongated calcified styloid and or stylohyoid process" because most ENT"S do not know what Eagles is. It is a syndrome named after a doctor who discovered it. However, all ENT"s know the anatomy. I would start there when discussing it. I hope you have a CT Scan to provide to him.
The only other questions would be. What do you know about It? Have you had any patients with it? Have you done any surgeries for it? If so were they intra oral or external.
The intra oral surgery is similar to a tonsillectomy, the other is from the outside. I think you should become informed before doing anything drastic like allowing a doctor to operate.
Normally, this is not life threatening, but it is painful. Most drugs including steroid injections do not help. Pain Killers sometimes help but you can't stay on them long term.
However, many of us have had the pain for years. The best thing for your daughter is to seek out the best possible doctor and one that you have proof has done several successful surgeries. We are all pretty happy with three doctors Dr. Cognettti in Philadelphia, PA . Dr Samji in San Jose, CA, and Dr Forrest in Ohio. Those are the ones that our members have reported as doing successful surgeries on them and that these doctors are also concerned and knowledgable.
There are others, I have a spreadsheet that I will try to attach to give you some other possibilities.
Please do not rush into a surgery with just any ENT. This surgery is tricky and can be botched and can leave your daughter in serious pain. Surgery is the ultimate solution, but it is not always successful. We try to up the odds for success by finding the most experienced surgeons. And most of us feel a lot better after surgery. Some of us do not have 100% relief all the time.
The problem is that this process is tangled in the intracranial sheath with several very important nerves and the carotid artery. The pain is neurological and it can be permanent if the nerves are damaged. Usually, however, we all feel significantly better after surgery even if not 100%. I hope this helps you to get started.
I can't load the spreadsheet. If you look for the discussion "Spreadsheet update September 2013" I think it is Sept 13 or Sept 18 2013, you will find an attached spreadsheet.
Rosebud
Ask the doctor tomorrow if he has ever diagnosed Eagles. Has he ever seen the surgery or done one. Can he even list the signs and symptoms of Eagles.( classic and vascular types) What would be his method of treatment. When symptoms are interfering with daily life, surgery is the treatment of choice. If he hesitates or has no experience treating Eagles, then ask if knows any doctors who do. If not then follow the advice from others suggestions for doctors on this website. I was fortunate because I couldn’t get an appt with an ENT for 8 weeks and so I decided to investigate University hospitals. When I found doctors at Stanford who did base of the skull surgery. I called them and talked to Dr Samji that very day! I would say that there is a high majority of doctors who have never heard of Eagles. ENTs may have heard of it but many have little or no experience.
Good luck tomorrow. Let us know what happened. The folks on this website are wonderfully supportive and have helped me. It’s so good to chat with people who have dealt with living with Eagles.
Polly
Get a 3D CT scan and pain medication so she can manage her pain! I went 10 months with out any thing until I about went crazy from so much undiagnosed and misdiagnosed causes. My pain was so bad I did not even realize I could palpate or feel the bone in my tonsil bed.
Go to the list on this site provided. I ended up with Dr. Samji in San Jose, CA. I highly recommend him since he did a revision surgery for me. You need someone experienced in this surgical procedure. If you are already diagnosed get into one of these surgeons right away. There is no need to suffer beyond the help you have available on this site! God Bless and all the best to you!
Rosebud, I just looked at your profile and see that you live in PA. I would very much recommend that you contact Dr. Cognetti at Thomas Jefferson Hospital in Philadelphia. I do not know how far that is from you, but he is the hero of the east coast members on this site. Many of our members have contacted him and he has looked at their scans and let them know what he thinks is the best plan. I can't tell you how much he charges for this, but he is the most experienced surgeon anywhere around that part of the country that we know of to date. Even if he does not do the surgery, most of us would recommend that you contact him immediately. Hoping this all helps and your daughter gets help soon.
Hi Rosebud, welcome to our large family. It will be a good place to start just like Emma said, go to Dr. Cognetti, and if u like u can search him on Google and get more details of who he is, I bet he's wonderful. Keep us posted of changes and updates, we r noisy when it comes to E.S., hahaha. Take care hon, and good luck, our fingers r cross for your baby girl.
Hi Linda, I've been having problems with my ENT in Florida, he doesn't know much about E.S. Actually he did mentioned to me years ago that he had never heard about it, he started to go on search once I brought to his attention. Still disappointed but surviving and living my life the best way a mom can live, can't complain.
How can I request a 3D CT scan? Do I need to go to him again, or can I go to my regular doctor who will see me this Wednesday? I have my regular physical exam and I have on my list the pain on my left side of my face and left ear. I mean, he knows about already but I don't have a full diagnose, and since I suffer from Chronic Migraine they all relate my pain to it, even my Neurologist.
Linda said:
Get a 3D CT scan and pain medication so she can manage her pain! I went 10 months with out any thing until I about went crazy from so much undiagnosed and misdiagnosed causes. My pain was so bad I did not even realize I could palpate or feel the bone in my tonsil bed.
Go to the list on this site provided. I ended up with Dr. Samji in San Jose, CA. I highly recommend him since he did a revision surgery for me. You need someone experienced in this surgical procedure. If you are already diagnosed get into one of these surgeons right away. There is no need to suffer beyond the help you have available on this site! God Bless and all the best to you!
Ronnie said:
Hi Linda, I've been having problems with my ENT in Florida, he doesn't know much about E.S. Actually he did mentioned to me years ago that he had never heard about it, he started to go on search once I brought to his attention. Still disappointed but surviving and living my life the best way a mom can live, can't complain.
How can I request a 3D CT scan? Do I need to go to him again, or can I go to my regular doctor who will see me this Wednesday? I have my regular physical exam and I have on my list the pain on my left side of my face and left ear. I mean, he knows about already but I don't have a full diagnose, and since I suffer from Chronic Migraine they all relate my pain to it, even my Neurologist.
Linda said:Get a 3D CT scan and pain medication so she can manage her pain! I went 10 months with out any thing until I about went crazy from so much undiagnosed and misdiagnosed causes. My pain was so bad I did not even realize I could palpate or feel the bone in my tonsil bed.
Go to the list on this site provided. I ended up with Dr. Samji in San Jose, CA. I highly recommend him since he did a revision surgery for me. You need someone experienced in this surgical procedure. If you are already diagnosed get into one of these surgeons right away. There is no need to suffer beyond the help you have available on this site! God Bless and all the best to you!Hi Ronnie, if you suspect you have eagles despite the fact that you suffer from migraines it is the only way to truly know the length of your styloids. Request it through either Doctor just get it done either way. That way you can at least rule it out from your list.Eagles is hard to diagnose especially if they think your styloids are within a "normal" range of length. Mine happen to be quit long, but even I missed the fact that it was in my mouth!!All the best and keep searching as you are your best Doctor when it comes to this.Linda
1. Send those ER doc's Christmas gifts like now....
Diagnosis is half the battle in my opinion, to think a more than likely overworked ER doctor found it is nothing short of amazing. Many people here have seen ENT's that looked at their CT and said, ' your fine' when they find out later they could have had a diagnosis years ago.
My best advice , is to be there for your daughter, this is not an easy disease, particularly if surgery doesn't fix all of her symptoms. Even when you are tired of her telling you " my neck hurts, my jaw hurts" be sympathetic. I can't tell you how many of us end up feeling like "Yes everyone cares, but no one wants to hear about it anymore, suffer quietly please"
Hope that helps, her mental state and whether it is positive or not has a great effect on people with chronic pain. Many of us never even knew what depression was until we became a chronic pain patient.