As you know I have been a longtime sufferer of Eagle Syndrome with primarily vascular symptoms. I've had surgery to shorten both styloids before, but the doctor (who had never done this procedure before) only removed a small amount of both styloids and left the calcified stylohyoid ligaments intact.
Needless to say, I feel certain that the calcified ligaments need to be removed. They must be impinging on a carotid or jugular vein or something to cause the sort of symptoms I am experiencing.
Anyway, I visited with Dr Yian in Irvine California a few days ago. The visit went quite well I believe. He feels it is likely that the calcified ligament is causing my symptoms. What he is proposing is removing the calcified stylohyoid ligament from the hyoid bone at the lesser cornu. He would do my right side first and then maybe do my left side later.
He proposes not shortening my styloid process any more for two reasons. The first is that the styloids are now within the normal range (around 2.5cm). And second, the facial nerves run very close to the styloids and there is a much greater risk of causing damage if he operates that far back.
By contrast, he feels like removing the calcification at the lesser cornu of the hyoid would be quite safe.
I am just looking for feedback on whether or not you feel like this makes sense? I understand that it is possible that a "normal" length styloid could still be causing problems but is it very likely? Or it may indeed be that it is only the calcified ligament that is causing the trouble now and not the styloids.
I am thinking that it makes sense to remove the lesser cornu of the hyoid first and see if that alleviates the compression.
It makes sense to me. My doc felt the same exact way and ended up removing part of my hyoid at greater horn and lesser Cornu and the entire ligament because he felt I had more calcification there. Unfortunately, it only gave me relief from my nerve pain fir about a week. I am not being discouraging as I think every person is different with a slightly different story. It could be successful for you even if it wasn’t for me.
Thanks for the feedback. Did you have any vascular symptoms though? My understanding is that if your symptoms are primarily vascular, the results for decompression can be VERY dramatic. Nerve pain is a little harder to be sure about.
I could live with some nerve pain if these cardiovascular symptoms would disappear.
My feeling is that my situation is similar to this one described in the PDF file I uploaded.
I appreciate your comments.
Christian22 said:
It makes sense to me. My doc felt the same exact way and ended up removing part of my hyoid at greater horn and lesser Cornu and the entire ligament because he felt I had more calcification there. Unfortunately, it only gave me relief from my nerve pain fir about a week. I am not being discouraging as I think every person is different with a slightly different story. It could be successful for you even if it wasn't for me.
I don't get dizzy or blurred vision, but I get shooting neck pain and chest pain. Unsure if this is tied to a vascular compression...my ct did say I had the styloid impinging on the jugular. Anyway, yes, I would say from everything I have read, and what my doctor has told me, is that it is likely that when people have calcification at the hyoid it is sometimes ignored and docs focus on the styloid causing the problem and not the hyoid or ligament.
If you have already had surgery on the styloid and still have symptoms and have calcification of the ligament down by the hyoid, it makes sense to see if that is the issue. After all, it is not considered "anatomically normal" to have the stylohyoid ligament calcified. That is why I don't understand why doctors don't always take the calcified ligament and styloid in the same surgery. I guess I am unclear if they can or typically do? Does he plan to go through the neck?
I've been told that the styloid should be taken down to about 1 cm. In my case that makes sense because I'm still having a lot of pain from a 2 cm piece of styloid still there. A doctor recently told me that styloid is at a weird angle, so that may be why I'm still having pain. I think it's very difficult to really know how much should be taken out beforehand.
Is there a reason why Dr.s just don't take it out be done with it? Is there some massive high risk of something? To me it just makes sense if something there that not sappose to be take it out be done unless it life threatening to do so.
God's blessing, that really is the question. The most experienced doctors seem to know to take it all out. Other doctors don't seem to understand or believe it. A lot of less experienced doctors also do intraoral surgeries where it's not as likely they can get it all.
I guess the question is whether or not I should try and get the doctor to resect the styloid down to less than 1cm as well as remove the calcified ligament?
He did say he would consider shortening the styloid further if I still have pain on that side once the calcified ligament is removed. I'm not sure if there is an increased risk of nerve damage or something considering this is a repeat surgery. Or it might even be better in the long run to do two small surgeries on each side for the calcified ligament and for the styloids?
I'd be interested in hearing more feedback on this.
heidemt said:
I've been told that the styloid should be taken down to about 1 cm. In my case that makes sense because I'm still having a lot of pain from a 2 cm piece of styloid still there. A doctor recently told me that styloid is at a weird angle, so that may be why I'm still having pain. I think it's very difficult to really know how much should be taken out beforehand.
As Heide says, if the styloids are at an angle then even short ones can cause problems. Again, we're not doctors, but looking at the scan taken from the back, your right styloid looks quite a bit wider than the left? Given that there's a narrow space and so many blood vessels in there....that could make a difference.
Food for thought:
1) I know you think you could live with nerve pain if the surgeon operated and damaged a nerve, but this can be a real killer, as I'm sure Heide will agree.
2) Nerve damage could mean facial paralysis, not just pain
3)On the other hand, if you opted to have the calcified ligaments removed and they didn't make a difference so you needed further surgery, that would mean more risk of scar tissue, which could make pain etc. worse.....
It is a difficult call....have you had a CT scan with contrast, to see if there is any compression on blood vessels? That might show where abouts the compression is, so you'd know if it's calcified ligaments or the styloid.
I appreciate the feedback. I should have clarified, but when I said I could live with nerve pain, I meant that if the Eagles Syndrome was only causing some cranial nerve pain and some headaches, I might opt to not operate. But since I'm having primarily vascular symptoms and I am concerned about a stroke or something like that, I don't feel like I have any choice.
I am well aware of the risk of a damaged nerve. I wonder what the risk is for that type of surgery?
I'm really trying to determine how often a Styloid of 2-2.5cm causes significant pain? I know that doctors probably should remove it to 1cm or shorter just to be sure.
The doctor explained that the danger of damaging a nerve would only exist if he went in under the ear to shorten the styloid. In contrast, if he makes a small incision at the level of the hyoid bone and removes the calcified ligament from the lesser cornu, there is very little risk.
I'm not sure there would be much more scar tissue formation if the doctor ended up doing two small procedures for the ligament and the styloid versus one larger procedure to remove both? Of course, if I had the styloid removed and it wasn't causing any problems, then I'd have a larger surgery unnecessarily which would create more scar tissue.
Fortunately my body doesn't tend to produce a great deal of scar tissue. I've had a couple surgeries in the past and scar tissue formation has not been a problem.
I guess I'm leaning towards having him just resect the calcified ligament at the lesser cornu and seeing what effect that has and then going from there.
I could have another CT scan, but I've had them in the past and they haven't really demonstrated compression of the blood vessels. However I've been told that they frequently fail to demonstrate compression even when it exists.
Anyway, I'd love to get feedback from some more members before I make a final decision.
Thanks.
Jules said:
As Heide says, if the styloids are at an angle then even short ones can cause problems. Again, we're not doctors, but looking at the scan taken from the back, your right styloid looks quite a bit wider than the left? Given that there's a narrow space and so many blood vessels in there....that could make a difference.
Food for thought:
1) I know you think you could live with nerve pain if the surgeon operated and damaged a nerve, but this can be a real killer, as I'm sure Heide will agree.
2) Nerve damage could mean facial paralysis, not just pain
3)On the other hand, if you opted to have the calcified ligaments removed and they didn't make a difference so you needed further surgery, that would mean more risk of scar tissue, which could make pain etc. worse.....
It is a difficult call....have you had a CT scan with contrast, to see if there is any compression on blood vessels? That might show where abouts the compression is, so you'd know if it's calcified ligaments or the styloid.
Sorry if I misunderstood you. Vascular symptoms are very worrying; that would be the deciding factor to go ahead with an op for me. If you don't generally have problems with too much scar tissue, then perhaps you should go for the ligament only option for now and see.
I'm waiting for results of a CT with contrast... didn't know that they're not always reliable either.
When I had my operation at the Cleveland Clinic, the surgeon told me afterward that my styloid was longer than it appeared on the CT scan (with contrast). Also, he apparently didn't see any compression on the CT scan, but when he did the surgery, I had compression of both the carotid artery and jugular vein. Before that, I always thought CT scans were an exact representation. But apparently they're not.
I guess since I'm having so much pain from a styloid of about 2 cm, my reaction would be to get as much of the styloid taken out as possible. But it's difficult and scary to give specific advice about anyone's case since we're not doctors and all our cases have so many variables. From my understanding, doctors are generally very reluctant to go in to do a 3rd surgery. But if your doctor says he would, then that might be ok.
Even the doctors all say different things. The doctors who have the most experience with Eagles seem to primarily do extraoral surgeries for example, but it seems like most doctors that do an occasional Eagles surgery almost always do intraoral. I posted a medical journal article a couple months ago that indicated extraoral surgeries were better for the treatment of Eagles. Maybe when I have a little more time, I'll try to go back and find it.
