My last post I was scheduled with a surgeon at University of Miami, who on review stated she is familiar with ES. My neurologist referred me to her because he wasn’t comfortable making the diagnosis having no knowledge or experience with ES.
I saw her, UOM, 2 weeks ago. I was so disappointed and discouraged after that appt I didn’t even want to post anything here. It was a terrible experience! I drove round trip a total of 6 hours in pouring down rain. I had to get up at 4:30am for 8am appt. I had terrible brain fog because the day before I had a tilt table test with a nitro induced syncopal episode. I blacked out completely and my b/p and pulse tanked. So I wasn’t feeling the best to begin with. Upon arrival they asked if I had a disc with the films. When I scheduled they told me they would request them because my appt was less than two weeks from the time I scheduled it, so no films. Then the doctor comes in and tells me she doesn’t do the diagnosing and that needs to happen before I see her (which is what I would expect to happen, but my neurologist felt different). She then asks what my symptoms are (all of which lines up with what I’ve researched), she doesn’t elaborate, she doesn’t ask questions or inquire with further questions for specific symptoms (this is important because sometimes we live with symptoms so long it becomes our norm and we don’t think of it as a symptom, to inquire further is standard practice). She quickly responded and said, “those aren’t symptoms for ES”. Then tells me, “even if it was ES I wouldn’t operate on you”. That was it! She didn’t elaborate why or anything! She did the scope down one nasal passage and said she’d order a CT of the neck for me and sent me on my way. I was so disappointed and discouraged! I’ve been to so many specialists and really thought I had finally found the answer. But after driving all that way feeling as awful as I did it was such a discouraging experience.
I contacted my PCP for an ENT referral that she may know that’s familiar. She reached out to one and said he wanted me to get the CT first. CT report states, “elongated styloid process and bilateral ossification of stylohyoid ligament, which results in Eagles”.
I knew I had it. I’m a former nurse with a high self-awareness and have researched it thoroughly. It’s disappointing that the surgeon, I saw was so dismissive and didn’t appropriately assess. Instead of saying, those aren’t eagle symptoms, she should have inquired further asking about specific symptoms “she feels” are eagles symptoms. In addition, she should’ve explained what the heck she meant by, “even if you had eagles I wouldn’t operate on you”. She did comment afterwards that I would be able to find someone to operate on me because surgeons love to operate but she wouldn’t do it. Unfortunately, I felt so awful, was exhausted and stressed from the drive and had such a brain fog I didn’t think at the time to ask her to elaborate on any of this. Now, I’m glad I didn’t. I’m better off not having any further interactions with her and believe this was God’s way of protecting me!
I’ve messaged my PCP and waiting for an appt with ENT now. But wanted to share this experience because I would not recommend this surgeon to anyone and want to encourage you that sometimes when a doctor or surgeon doesn’t workout it just might be God’s way of protecting us.
Hello! I just read your story and feel so terrible that you’ve gone through this. Even as a nurse, the lack of respect is mind boggling. I was diagnosed in 2021 and did get extremely lucky with an ENT Surgeon that happened to be friends with a surgeon in another city in my state, Kentucky, Who was very familiar with Eagles syndrome and had done surgeries. He’s an ENT oncologist. But, he knowsEagles Syndrome . I had a CT scan done of my neck because I was experiencing extreme neck, pain, sore throat stabbing pain in my throat, so bad that I coughed and choked and had ear aches, shooting pains, all of the symptoms that so many of us have experienced. But, the CT scan results, via the radiologist in our local hospital, came back as normal. I went back to my PCP and explained to her that I was choking to death and gagging, and having stabbing pains on my right side of my throat and I had laryngitis And she sent me to this specific ENSurgeon just 45 minutes away and he immediately told me that I hadEagles syndrome. Although I got very lucky, I did have to wait about six months for all of that to happen. Many people wait years. I had the surgery on the right side through the mouth, I know there is a technical term for that, but I forgot what it was. It provided great relief until 2023 the right side started to have issues again and that same surgeon sent me to a radiology oncologist in that city. The place where I had my surgery was 3 1/2 hours away, Louisville, KY again, I complain that it’s a long distance, but many people have to go much further. The radiology oncologist prescribed me gabapentin in 2023 and send me on my way. Then, I had a three minute telephone conversation with him because his telehealth system was down and I explained that the gabapentin was helping a little bit, but I was still having symptoms and he said that’s fine and then his nurse would not prescribe a refill because she thought I was a drug seeker. I am never been a drug seeker. I’m 68 years old and a retired professional, who has never been addicted to drugs or alcohol. But, I was so frustrated because it was such a long distance to have to go there every month just to get gabapentin that I weaned myself off of the medication and suffered. Then in 2024, in May, the left side started having the stabbing pains and then my symptoms became quite severe, and I requested to get the CAT scan so that I could see the ENT so that he could diagnose it and I could go back to my surgeon. It took two months just to get the CT scan and it finally happened and about five months, in October 21, 2024. I got my surgery on the right and left side. They went through my neck this time, the first time he did the right side through my mouth, and apparently calcification had occurred on the right side and it needed to be cut more and the left side had calcification and of course needed to be shortened. It has been about six weeks and I went back to the surgeon this week and he prescribed gabapentin and steroids. I must say, it feels as if the steroids have helped somewhat with swelling and the gabapentin. He told me I must take three times a day, which I was not taking it regularly. I was only taking it once a day because it made me drowsy. Anyway, my point here is that I was extremely lucky and many people are not. I advise everyone to start with your PCP and ask if they can request a CAT scan and then refer you to an ENT surgeon who is familiar withEagles syndrome. We did not know, at the time that I was referred, that I had Eagles syndrome because no one had heard of it. I just got lucky because this guy happened to be familiar with Eagles syndrome. I know every medical community has its own process, but hopefully if you can get the CAT scan and an ENT to diagnose it then you can get to the surgeon. I think you were very lucky to get away from this ego maniac of a surgeon that you met with. It’s sad that we have to fight for our healthcare and I gave up many times because I was so frustrated and felt like everyone thought I was a hypochondriac. Keep fighting, since you’re a nurse, I know that you won’t give up because you cared for so many people now it’s time for someone to care for you! I wish you the best. I am still healing, and hoping that the surgery has worked, I still have sore throat and slight stabbing on the right side, but much much better. I’m glad we have this community to talk to, because people don’t understand. I thought I was going for a same-day surgery and woke up with tubes coming out of my neck and in the hospital. We just never know and don’t give up the way that I did, because it’s a painful and miserable existence not to be treated. Keep fighting!
@Robin7 - Thank you so much for coming back to share your story! I’m very sorry you had to have a second surgery on your right side, but sometimes that happens if the styloid isn’t cut short enough the first time around as it can regrow if too much was left. What good news that the same surgeon chose to do the transcervical (through the neck) approach the second time & that he did both at once. The recovery is a little harder at the beginning with both sides done but at a month post op you should be feeling significantly better. I’m glad he Rxed steroids & gabapentin to help with your post op swelling & pain. Since you’ve already been through this surgery once, I expect you know that symptoms may come & go for a number of months after surgery before they completely stop. In some cases, a symptom or two may stick around for the long-term but nerve pain medications such as gabapentin can help to keep you more comfortable & your life more normal.
Do you mind sharing the name of the surgeon who did your surgery? I’d like to see if he’s on our Doctors List. If not, I’ll add him if you think that’s ok.
I hope your recovery progresses quickly & you feel like new once healed.
Hello! Thank you so much for your kind words. You are right, the symptoms do come and go and it takes time. I still have stabbing pain on the right side, even though I can feel a huge difference on the left side there is no pain As of now. It will be two months on December 21 and I did overdo it at the beginning therefore, my recovery time was a bit longer. I still have swelling under my mandible and some shooting pains, but it is much better than having not had the surgery. I’m hoping I do not have long-term issues, but if I do, my surgeon assured me that they would try the gabapentin and if it doesn’t work long-term, he will continue to help me. He’s an amazing surgeon. My surgeon is Dr. Paul Tennant and he works in Louisville Kentucky at Norton’s Hospital. He also spends two days per month in another city at an office closer to our home. Therefore, he tries to make appointments with me at that location so that I can cut my drive in half. He’s very knowledgeable about Eagle syndrome and very compassionate. I just got so lucky with him and I also have an ENT surgeon in Evansville, Indiana, Dr. Todd.Wannamuller at Deaconess ENT in Evansville, Indiana. He also assisted by removing the tubes from my neck one week after my surgery so that I would not have to drive 3 1/2 hours to get to my surgeon. They are working together to make sure that they make it as easy for me as possible. It’s unusual and amazing. Dr. Todd does not perform Eagles syndrome surgery, but he is the one who finally diagnosed it for me and that was huge! So, as a diagnostician for Eagle syndrome, he would be a great person to see. Again, thank you for your kind words and I am doing better every day and just making sure I do not push the limits, I always advise people now that the neck is very delicate and so many nerves involved, therefore, following doctors orders is critical. Again, thank you so much!
Thank you so much! So far, everything is going along smoothly. The steroids kept me up for five nights, but I don’t mind losing sleep if they help. And they did! Time will tell and I can’t thank you enough for just caring! It’s difficult to have a disorder that is rare and confusing. I feel like this website has provided me true support. Thank you again! Happy holidays!
Thank you for your doctors’ information, @Robin7. Dr. Tennant was already on our list but Dr. Wannemeuhler wasn’t so I added him. He’s the first ES doctor we have listed for Indiana. I noted he diagnoses but doesn’t do surgery. How wonderful that Dr. W is willing to see you for post op care even though he didn’t do the surgery! I recently added Dr. Cord to our list. He in Sacramento, California, & is willing to do the same thing. We need more doctors who are available to help with post op care as these two are!
It sounds like you’re really doing well early on after your bilateral surgery. I hope all the nerve pain disappears over the next year so you won’t need to take gabapentin at all, but it’s good that it’s helpful now.
Happy holidays (I celebrate Christmas). I hope you’re able to enjoy some good family time this year.
You so much! After reading many stories of other ES Patience, I realize how lucky I have been. I woke up this morning and felt like I had a huge apple in my throat and I am very swollen, so, I guess it’s a roller coaster and I’m up for it. I realize how lucky I am and That my physicians have been very receptive having a doctor/ENT surgeon who was able to diagnose my ES was life-changing. So, I hope that happens for more and more people. Also, having him as a back up is also critical, because it’s only a 45 minute drive versus 3 1/2 to 4 hour drive. Again, thank you so much And merry Christmas to you and your family. I will be spending Christmas in our home with my husband, our son and two granddaughters. Also, my sister who is deaf and lives close by. I’m just happy that I am in a condition where I can do the traditional family meal! Merry Christmas and enjoy your family as well.
I understand the “apple in the throat” feeling. I experienced that, too, after my surgeries. It did go away after a while. If you have days with more swelling or pain, get back to icing off & on as it can be helpful. The alternative is to try heat to see if that works better. Ice worked best for me but @Jules found heat was more soothing.
I’m so glad you’re feeling well enough to face making a traditional family meal! I leave that up to my husband. His family got the “good cooking genes”. I’m great at washing dishes!! It’s great you’ll have at least some of your family with you. My grandchildren are 1500 miles away. We anticipate having Christmas with them next year though as we’re in the process of moving closer to them. My sister is hosting us for Christmas this year since our house is full of packed boxes right now.
I feel guilty complaining that my grandchildren are 3 1/2 hours away. I often see people who see their grandchildren every day and it is difficult, so I can only imagine how you feel. It’s part of life, I understand that, so we make the best of what we Can get. I hope you get to move much closer and spend more time with them!
My son is moving his father, who is 69 years old and in poor health, and into his home to take care of him tomorrow. So, we are not having Christmas in our home, as planned due to the fact that his father is just out of the hospital and he does not want to leave him during the holidays. Quite understandable! But, we are going to see our oldest granddaughter in a play on December 22 And we’ll just go to a nice restaurant, open gifts and enjoy them as long as we can and then watch her in the play and celebrate her opportunity to sing two songs/solos in the play and watch her dream come true.
Thank you for the advice on the ice and the heat. Sometimes, I tend to forget that I can use ice and my husband has generously filled some ice bags for me in the freezer. The stabbing pain is definitely a problem and I don’t think it will subside, as it is identical to the stabbing pain, on the right side, as it was after, now my second surgery on the right side. The gabapentin is not helping, but I am going to do as you suggested and use the ice and the gabapentin and if it’s not improved within the next couple of weeks, I’m going to contact my surgeon. Enjoy the holidays at your sister‘s home. We are having my sister over for a nice meal and we will unwrap gifts, it’s just going to be the three of us. We went from about 25 people at our family reunions, and now there are three! My mother passed away when I was 18 years old, and my father taught me how to prepare our traditional holiday meals from that age, and I did not know how to make spaghetti, but I knew how to bake one heck of a turkey, ham and all the sides you can imagine for a holiday meal! Lol! I hope you enjoy the holidays and thank you so much for your support. It truly has meant a great deal! Peace.