Thanks everyone for the support. It’s nice to have people to bounce ideas off of. I’ve been reading a lot of cases over the last few weeks. I haven’t been able to find one exactly like mine. I see a lot of elongated styloids but not as many with just the calcified ligament like I seem to have. I see 3 distinct pieces which shows calcification that would be between 2 and 4.5 cm below the styloid process. From what I’ve read that seems to be an area where trouble with the nerves can start. I’ve also got the calcification down at the lower bone. It seems like others on the board have had so much trouble getting someone to help. My doctor has been great and willing to do the surgery. We’re at a large teaching hospital and he is well qualified. Hadassa to answer your question my pain has been in my ear, face, eye, and throat. It has been awful. I pray every night that this is the answer and that I can have my life back.
jrodefeld has only calcified ligaments. They look like a 2-tined fork coming off his hyoid bone. You could search his posts &/or send him a private email to discuss his situation.
Good Afternoon, I had surgery yesterday and was sent home from the hospital today. The doctor said he took out the entire ligament that was calcified in several spots. He also said there was a lot of tension on it down at the Hyoid bone. He said now we wait and see if it helps my symptoms. I’m stiff and sore and have to be careful not to move my neck around too quickly. I also have a drain in but I am close to the hospital so it’s easy to go have it taken out later. I would say all and all I don’t think the surgery was that bad. If you are really in pain and the doctors think this can help I would have it done. I think it would be much less suffering. To this point I don’t appear to have any significant side effects. They say my lower lip is a little weak but I don’t notice it and neither does my wife. They said it will come back.
Thanks,
Mike
Glad that you’ve had your surgery, & are home… hope that you heal well & notice improvements with your ES symptoms. Make sure you take it easy, & let us know how you get on!
HOORAY! Your surgery is done!
Please keep in mind that days 3-5 post op will be when you experience the most swelling & thus potentially more pain than you currently have. DO NOT BE DISCOURAGED! You aren’t moving backwards. With ES surgery forward progress toward healing often involves new types of pain or flare up of old symptoms because nerves are regenerating & vascular tissues are decompressing. These things can take up to a year (or more) post op to fully recover so the name of the game is PATIENCE!! Listen to your body & lay low for at least 2 weeks post op. Jumping back into the game of life too quickly will also slow your healing progress. It was 2 months after surgery before I felt like I could fully engage in my life again. Some people heal more quickly but some more slowly. Listening to & obeying your body when it asks for rest is mandatory for the quickest recovery.
Thanks for the kind notes. My doctor told me that we’ll have to wait now to see what happens. I’m not always the most patient guy in the world so I’m going to have to work at it. I’m keeping my fingers crossed.
Thanks,
Mike
Good evening, I wanted to give an update on my surgery / condition. I had my surgery 10 days ago at Ohio State University, James Cancer Hospital. The surgeon that operated on me was Dr. Old. I had a good experience at Ohio State and it is close to my house so it worked out well for us. My surgery was done externally and like many people on the site mention the incision was folded into a crease in my neck and I would anticipate that over time it won’t be all that noticeable. I’m a 41 year old male in good health. I had never had any type of surgery before in my life. Up until this point I had been very healthy. The surgery lasted a little over an hour and I was left with a drain afterwards. I spent one night in the hospital and was released the next day around lunch time.The drain came out a few days later. I was worn out for the balance of the week and didn’t see any meaningful change in my symptoms. I went back to work this past Monday (I missed one week) and I think I have started to see some improvement in my symptoms. I’ve been reluctant to post anything because I was concerned it might be placebo effect but at this point I think I have enough data to say something is different. My 2 largest symptoms have been ear pain and facial pain. They are both down. The are not at 0 at this point but it’s better. I’m seeing it and the people around me are seeing it too. If you are in the Midwest and need a good medical staff to help you through Eagle’s Syndrome I would recommend Dr. Old’s team at Ohio State. They are there to help and he believes in Eagle’s syndrome. He told me he handles about 6 cases per year. It’s too soon to know how things are going to end up for me but this week has been one of the best I’ve had in a really long time.
I know from my personal experience that this is a scary syndrome to be afflicted with. It was hard for me at times to keep my emotions in check. I worried about the future, how I would take care of my family, and how I would survive the pain day in and day out. I spent some time going through my medical records this evening, I was seen by 27 Medical Doctors over the past year. The medical team included Dentists, Neurologists, ENT’s, Neurosuregon’s, Opthamologist’s, Allergy Doctor’s and there were probably a few others in there. I had 2 Full CT Scan’s, 4 MRI’s, 2 Sinus CT’s, an Angiogram and probably gave at least a quart of blood for testing. I also lost 40 pounds throughout the process. It is hard on people.
I’m not sure if I’ll get back 100% to where I was when this all started but I promised myself that if I ever found a way out that I would tell my story so that others may benefit from what I have been going through. There are a few things that you need to keep in mind when going through diagnostic phase.
1). The symptoms of Eagle’s Syndrome hurt badly both physically and emotionally.
2). You need support from faith, friends, and family. There are a lot of ups and down’s. I questioned why this was happening to me, would it ever end, had God abandoned me? You don’t think clearly when you are in pain.
3). If you are having neuropathic pain and can get some medicine to help with it give it a shot short term. There are side effects and I didn’t like them either but it just may be enough to get you over the hump.
4). You are not crazy. It hurts and it hurts badly. The symptoms are real. If the doctor isn’t receptive to that find a new one immediately.
5). There is hope (and I nearly gave up a couple times).Keep reading and using your resources. There is someone out there that can help you.
I know this is a little scattered and I’m happy to help answer questions that others might have. I am by no means cured but for the first time in a long time I believe I see a small light at the end of the tunnel.
Thanks,
Mike
Thank you for your very positive post, Mike. I’m so glad you’re seeing some changes for the better. By two months post op you’ll have a much clearer idea of what your long term recovery looks like. As I & others have noted, nerve damage is a bugger & slow to heal. You may continue to notice improvement (pain reduction) for a year or more after surgery. God made our bodies able to repair themselves, but the more complex systems take more time. Your energy will also wax & wain for awhile so take it easy on your “tired” days & try not to overdo on your “energetic” days.
So appreciate the list you added as encouragement to those still looking for a diagnosis. Pressing on toward the goal of getting diagnosed & treated can be a struggle but the dividends that pays are life-giving in the end.
Really glad that you feel you’re seeing improvements, & have been able to go back to work. I hope that the light at the end of the tunnel gets brighter & clearer soon!
And thank you very much for sharing your surgery- it’s a real encouragement to others. Best wishes for the rest of your recovery.
Thank you for the update. It helps to be able to read other peoples experiences with ES.
May God bless you and may your healing continue.
Thanks for the update Mike…those of us still waiting for surgery truly benefit from commentary such as this. I’m so glad you can tell a difference and that others can too! This ES thing is so crazy and I don’t know that there is a way to describe it to others that are not afflicted. Amazing how many health care providers were on your list. I have not taken the time to write those down, but I feel I have a similar list over the course of this. I am also happy to know that returning to work can happen sooner than 2 weeks if all goes well. I can’t imagine being down for 2 weeks or more…that’s a LOT for me. I’m pretty hyper and just sitting or lounging through a whole movie is hard for me.
Thanks for sharing and keep those updates coming please!
@n8qaz I know this post is old so I hope you don’t mind me checking in. I’m wondering how you are doing now that 2-3 years have passed. Did the surgery help you significantly with your Eagles symptoms?
I’m from Ohio as well, and may have Eagles. I’m just looking for something local. Thanks.