I have ossification of the stylohyoid ligament bilaterally, longer and larger on the right side extending to the right lateral margin of the oropharynx. My symptoms are: lump in the right side of my throat (which I can feel), pain behind my right eye and right side of my face feels unusual. I can't turn my head to the right to sleep at night. I've had flashes of light in my vision occasionally (I can only describe it like a predecessor to a migraine without the headache) and a constant ache along my jawline.
The surgeon I have been seeing would like to operate externally, however he has informed me of the risks, such as nerve damage to the face, tongue, auditory etc. He said that during the surgery he would put monitors on my face to assess for any nerve damage as he's operating. I'm trying to make an informed decision to either go ahead with the surgery or put up with my symptoms. From what I've read on the discussion list, most people post-operative have problems. My question is, what are the risks with external surgery and percent chance of nerve damage either temporally or permanent?
The specialist I've been seeing is highly qualified and has operated on patients for Eagle syndrome here in Australia.
Can I ask who is your surgeon and where in Australia is he/she located? Have they operated on this before. Apologies, I cannot offer you any advice as I am still contemplating whether or not to have the surgery myself for similar reasons to you. I have seen Alf Nastri in Melbourne. When he diagnosed me ( a year ago). He had never operated on someone with Eagles.
Hi Emipie, The surgeon is Dr Samuel Dowthwaite on the Gold Coast and he has operated for Eagle Syndrome before.
Emipie said:
Can I ask who is your surgeon and where in Australia is he/she located? Have they operated on this before. Apologies, I cannot offer you any advice as I am still contemplating whether or not to have the surgery myself for similar reasons to you. I have seen Alf Nastri in Melbourne. When he diagnosed me ( a year ago). He had never operated on someone with Eagles.
I was surprised to read this. I think most people do fine after surgery. In fact, I think three of my Eagles surgeries have been some of the easiest surgeries I've had. I think if there is a problem afterward, it's usually when the doctor doesn't take enough of the styloid out, so some still struggle with Eagles-type pain.
In fact, the external surgeries are considered easier to recover from than the intra-oral surgeries.
There are always risks with any surgeries, of course and I do know of two instances where people had real trouble after surgery when the doctor missed the styloid completely.
I had pain after one of my surgeries where I guess the doctor irritated some nerves and that one took me about 4-5 months to fully recover. That surgeon had never done an Eagles surgery before mine. But these problems are the exception rather than the rule from what I've seen.
In my situations, I was in such bad pain that I was practically begging for the surgeries. So if your pain isn't that bad yet, maybe you do want to wait until you feel more compelled. It's good that you have an experienced surgeon who seems to understand Eagles. Believe me, that's not that easy to find.
My specialist is Dr. Futran at the UW medical center in Seattle. He said he would never do it externally. I had both sides done this year, one in April, one in Oct.. My recuperation period was minimal; it was like a tonsillectomy, only took longer and more incision. I could have gone home the same day, but they kept me overnight because of my age (67). I felt relief immediately, outside the yuck from the surgery. Of course, everyone's physical being affects the ability to do it thru the mouth. I had TMJ surgery years ago and this did not affect it at all.
Dr. Futran is director of the Oto/ENT Dept., neurosurgery. He was the Dr. who handles Eagles.
I can not imagine having it done from the outside, with all that is involved. However, I do not know your circumstances. There was never any concern about the potential damages you describe. I fyou are leery, see if you can have a phone consultation with his office. Neal Futran, UW Medical Center Seattle WA 206-■■■■■■■■.
My son has had styloidectomies on both sides now. He was in unbearable, excruciating pain before each one and couldn't live at all. He was basically bed-ridden. both surgeries have seemed miraculous to us. They were done externally so the recovery was a few days and all his swelling was almost gone a week later. He was on oxycodone before both surgeries and after each surgery he only took Tylenol once or twice. He said the pain from the surgery was NOTHING, compared to the pain he was living with from ES. My words of advice mirror heidemt - make sure the doctor makes every attempt to remove the entire styloid and any calcified ligament he sees when he is in there. They can both cause problems. As for nerve pain afterwards, eating was hard for a few days, then the jaw got better. The first styloidectomy the nerves were wrapped tightly around the bone so it was harder to get the bone free and he had some numbness in his neck and side of face for a few weeks, but it went away as the nerves settled. The second time, the nerves were not wrapped tightly so his recovery has been quicker. (It has only been a little over a week now). He still has some muscle jumps on one side of his neck into his cheeks, but he said he would take that anyway over the pain of ES. Good luck and keep us posted.
I had the external approach and from what I have read the external approach gives a much better view of all the critical structures of the neck area. Surgery was outpatient and recovery was literally three days. I still had some numbness around the incision site for several weeks but nothing major. For these reasons, I would recommend the external approach if you have a choice but have no experience with the intraoral approach, so I guess I have a biased opinion.
Has anyone had the intra oral approach where they had to have the tonsil removed also? I would like to know what the recovery was like as I can not possibly imagine having the both. Thanks, to anyone who has info to share.
My surgeries included tonsillectomies. Dr. Futran said that is part of the procedure; in order to get to the stylohyoid and remove it. They did not cause me any problems. Tonsillectomies are a simple snip and cauterizing. As soon as they are snipped, the Dr. goes in for the stylohyoid.
Remember that everyone is different and no procedure is fully guaranteed. I wish I had had my tonsils removed years ago, I know part of my problem was them.
Just remember the pain is not going to get better on its own.
Dr. Futran does one side at a time and recommends the oral process only. I was able to stay in hospital overnight due to my age, etc.
Our doctor generally does intra oral. External was only done because my son was a child and his mouth was really too small to do what they needed to do. I have read from others that the recovery is longer intra-oral just because it is hard to eat and drink with those surgical wounds in your mouth. Infection is a risk either way, but in the mouth it is a higher probability just due to the nature of the bacteria that live in your saliva.
My throat was 'sore' for about 10 days, then, boom nothing. It all depended, too on what I ate and if I didn't hydrate enough. Salt water gargles helped. But, I am 67, so everything can be less resilient at that age.
Did you have a lot of swelling, scabs, bleeding? From what I have read on just having a tonsillectomy it seemed unbelieveable and to add to that the additional surgery. You must have been on of the better ones.
Ladygw said:
My throat was 'sore' for about 10 days, then, boom nothing. It all depended, too on what I ate and if I didn't hydrate enough. Salt water gargles helped. But, I am 67, so everything can be less resilient at that age.
There was some drainage, of course. But it was really nothing because I have had so many major surgeries (and back when things were not done with microsurgery) with horrible looking surgeries and lots of crud, I know they all have some aspects of yuck, concern, pain, blood. It just seems really awful because it is your mouth and throat, where you breath and eat. I did not have scabs, but it was more than a tonsillectomy, so I can't compare.
It really is minimal, even for those I have talked to. Just think that is done on little kids, so it can't be so bad that it is not tolerable. I think adults have expectations that nothing should have side effects. It is just a matter of understanding and dealing with everything. That is not to say something might not be the best, and nothing is ever guaranteed. I could tell you about some of my experiences, but there isn't room here. Just suffice it to say, are you so in pain now that whatever you need to do, you will? Before I had my two 'brain' surgeries for SCDS I was terrified, but I was also dying and would have killed myself if that hadn't been fixed. Eagles was choking me to death, too, so there was not the slightest hesitation. Again, you will hear all of bad stories; some are real, most are just personal interpretations. Just find a good dr. who will remove everything, but not promise you the moon. Dr. Futran at the UWmedical center was the dr. who did that for me.
Thank you so much for sharing your experience. I can't imagine all that you have been through. I really appreciate the information and the encouragement. God bless you, I hope you are doing well now.
Ladygw said:
There was some drainage, of course. But it was really nothing because I have had so many major surgeries (and back when things were not done with microsurgery) with horrible looking surgeries and lots of crud, I know they all have some aspects of yuck, concern, pain, blood. It just seems really awful because it is your mouth and throat, where you breath and eat. I did not have scabs, but it was more than a tonsillectomy, so I can't compare.
It really is minimal, even for those I have talked to. Just think that is done on little kids, so it can't be so bad that it is not tolerable. I think adults have expectations that nothing should have side effects. It is just a matter of understanding and dealing with everything. That is not to say something might not be the best, and nothing is ever guaranteed. I could tell you about some of my experiences, but there isn't room here. Just suffice it to say, are you so in pain now that whatever you need to do, you will? Before I had my two 'brain' surgeries for SCDS I was terrified, but I was also dying and would have killed myself if that hadn't been fixed. Eagles was choking me to death, too, so there was not the slightest hesitation. Again, you will hear all of bad stories; some are real, most are just personal interpretations. Just find a good dr. who will remove everything, but not promise you the moon. Dr. Futran at the UWmedical center was the dr. who did that for me.