I am new here, but not new to Eagle. I was so happy to find this group, since ES can be such a lonely experience.
Seven years ago, after a long struggle for proper diagnosis, I was finally diagnosed with right side ES. At the time, my symptoms were relatively minor, and I was relieved to have a diagnosis, so I decided to live with the symptoms: constant Eustachian tube problems were the most serious. Being able to feel the styloid in the back of my throat was the scariest, but it didn't hurt or interfere with swallowing.
But now my symptoms have progressed to the point where the ES needs addressing. In addition to the full ear, I have ear pain, pain and swelling under the jaw, pain when turning my neck, and occasional throat pain. CT scan shows 3.5 cm on the right, and 5 cm on the left (but no symptoms on the left).
So, long story, short: I have an appointment with an ENT surgeon tomorrow. I know that he has performed the internal surgery a few times (like maybe three times in 15 years). I live in St. John's, Canada, and I seriously doubt that anybody local has more experience with ES, but I would like to explore other options, especially the external surgery.
I would be grateful for any feedback from your experiences. Has anyone who had similar symptoms received relief from the internal surgery? Is there anything wrong with trying the internal surgery first, and then (if unsuccessful) having the external surgery later? Has anyone in Canada had to travel to seek out treatment? Anything in particular (beyond the obvious) I should talk to the surgeon about?
I did the internal surgery almost a month ago. It didn't helped much since they can't remove so much of the styloid. I think it's better to go directly to the external. Many here had the same experience.
Now I am in a great pain but have to wait to get the external surgery done.
Your right styloid, with only 3.5 cm, could not be bothering you more than the left with 5 cm. The ES cause this inability to locate exactly where the discomfort. Everything is very diffuse. When the doctor asked me to describe what I was feeling, I realized the difficulty to explain in words.
I had an internal surgery on my left side which resolved my glossopharyngeal neuralgia and the feeling that a nail was sticking in my neck, but not some other pain that I had. I later had an external surgery to get more of the styloid out, but he couldn't get it all because of scar tissue from the first surgery. My other pain was decreased, but not eliminated. I really, really regret that I didn't go to an experienced Eagles surgeon for the first surgery and get the whole thing taken out. I went to a local guy who had never seen Eagles before (I live in Hawaii). Now I've spend the last 3 1/2 years traveling all over the country to try to get the rest of the styloid taken out. I should note that I had Eagles on both sides, so a good chunk of that 3 1/2 years was dealing with the right side too.
But, having said that, there have been a lot of people on here that had internal surgeries and have done well. So you might be ok with an internal surgery. If you do have an internal surgery, you could most likely find someone to do a revision, but you gamble with the scar tissue limiting the next surgery.
Also, I had problems on both sides, but my left side, which is the shorter side, gave me more pain than the right side did. I have now come to the opinion that the length doesn't matter as much - it's what nerves are being impinged.
I'm sorry to hear that you are in pain. Thanks for your experience. Do you have to wait because the first surgery is still healing?
Valeriana2013 said:
Hi there.
I did the internal surgery almost a month ago. It didn't helped much since they can't remove so much of the styloid. I think it's better to go directly to the external. Many here had the same experience.
Now I am in a great pain but have to wait to get the external surgery done.
It is difficult to express the feelings, isn't it? I don't think the measurements mean much. The shorter styloid (right) is poking into my throat, but the longer one is pointing straight down. I guess it is not bothering anything!
Brazilian said:
Hi eAmator
Your right styloid, with only 3.5 cm, could not be bothering you more than the left with 5 cm. The ES cause this inability to locate exactly where the discomfort. Everything is very diffuse. When the doctor asked me to describe what I was feeling, I realized the difficulty to explain in words.
Thanks for this. Before I make a decision, I will definitely try to find someone who has experience with the external surgery, even if it is only for a consult. It might mean some traveling, but I can't think of anything I would rather spend money on right now!
heidemt said:
I had an internal surgery on my left side which resolved my glossopharyngeal neuralgia and the feeling that a nail was sticking in my neck, but not some other pain that I had. I later had an external surgery to get more of the styloid out, but he couldn't get it all because of scar tissue from the first surgery. My other pain was decreased, but not eliminated. I really, really regret that I didn't go to an experienced Eagles surgeon for the first surgery and get the whole thing taken out. I went to a local guy who had never seen Eagles before (I live in Hawaii). Now I've spend the last 3 1/2 years traveling all over the country to try to get the rest of the styloid taken out. I should note that I had Eagles on both sides, so a good chunk of that 3 1/2 years was dealing with the right side too.
But, having said that, there have been a lot of people on here that had internal surgeries and have done well. So you might be ok with an internal surgery. If you do have an internal surgery, you could most likely find someone to do a revision, but you gamble with the scar tissue limiting the next surgery.
Also, I had problems on both sides, but my left side, which is the shorter side, gave me more pain than the right side did. I have now come to the opinion that the length doesn't matter as much - it's what nerves are being impinged.