Having just been diagnosed (3.5mm on right side) and I have a few questions.
I have a quite severe pain that shoots from my neck up the back right side of my head, at the moment it is maybe every month or 2 and lasts maybe for a week to 10 days.
Is it likely to become more frequent?
Paracetamol or aspirin don’t get close to easing the pain.
Is the any painkillers that you recommend?
If it worsens I would consider surgery, my ENT doctor strongly advised against surgery because of the risks involved which to be honest seem quite extreme.
Is surgery a safe option?
And does anyone know of a surgeon for Eagles in Germany?
Thanks in advance for taking time to read my post, any helpful replies will be greatly appreciated.
Welcome to our group. I am so sorry you have Eagles. It can be quite frustrating. Your pain may or may not continue to come in waves. I don't know of any painkillers that help much. Others may have more information on that.
Surgery is a safe option in the hands of a really good surgeon, but there are never any guarantees and sometimes surgery does not relieve the pain. Many of us have had great success and others not so much, but right now, the best option for Eagles is surgery. However, my doctor said that he did not recommend surgery unless it becomes a serious quality of life issue. For him that means, you must take lots of medications that are not getting rid of the pain and the medications are interfering with your life as well. I waited 2.5 years and finally asked him to do the surgery. Then he said that he was surprised I waited so long. He was not anxious to jump in and do surgery unless I was comfortable asking for it. I am glad that I had it done, but I still have issues on occasion, like neck pain and a feeling of something stuck in my throat. It seems to get better with time.
I do not know of any surgeons in Germany who are familiar with Eagles. We have found that the Ear Nose and Throat doctors associated with universities MIGHT have some knowledge. Also, try to look for surgeons that are comfortable with skull base surgery. Hopefully, someone else on this site will have more information. I believe some oral surgeons may also be competent, but they also are few.
I hope you find answers and help and support from our members.
For me, surgery was absolutely safe and worth it. I had surgery 4+ months ago (first one side, then the other) and I rarely feel a tiny twinge of es symptoms anymore. Most of the time I forget all about es, except for during my prayers for those of you who haven’t yet been helped.
I recommend using a surgeon from Emma’s list if at all possible. Best wishes.
Bono, there are a lot of very important nerves bundled near the styloid. If a nerve is severely damaged either by the styloid itself or the surgery then the pain may continue. That is why I researched ALL the previous posts and started looking for a doctor. Unfortunately, I only found this website about a week before my scheduled surgery and I didn't have the energy to change doctors. Fortunately, for the most part my surgery has been successful, but I do have much more difficulty turning my neck sometimes and more pain in my shoulder. I am not sure if this is from the surgery or the positioning of my neck during surgery or just degeneration in my shoulder and neck.
However, while I was recovering and not getting better, it seemed. I decided to find a second doctor and started a spreadsheet and found that one doctor was being recommended over and over as doing successful surgeries, both intra oral and external.That was DR. Cognetti, Since then we have had two or so more that seem to be regularly successful. To me it means that they really know their way around inside the neck and make the least errors by making the best operative decisions.
I decided that my spreadsheet took several weeks of reading and that I should make my list available to all of you so that you do not have to start over researching several years of posts.
Emma did us all a huge service by compiling the spreadsheet. Thank you, Emma.
I agree that Dr. Cognetti seems to be a rock star surgeon for eagle. He was my surgeon. He did an excellent job. He's in PA, and Dr. Samji (I think that's his name, ask heidemt) is the rock star on the west coast (CA).
