Unsure about proceeding with surgery, looking for some advice or reassurance

General
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I've posted a number of times about my present condition and I haven't yet had surgery. I've had the hardest time getting anyone to think it is worth doing.

To recap, I had surgery for Eagle Syndrome on both sides back in 2009 but the surgeon was inexperienced (I was his first case) and he removed only a little of my styloids. The lesser cornu and ligament remain calcified and the styloids remain longer than 2cm.

I feel very confident that there is a jugular vein and/or carotid involvement, more on my right side than on my left. The pain is constant. I get a feeling of fullness and weakness in my arms and neck especially when I lift them above my head like when I shoot a basketball.

I have most of the classic Eagle Syndrome symptoms. Painful swallowing, difficult to turn neck, pulsating spasm pain in my jaw and face, etc.

I'm having some second thoughts because I can't seem to get any doctors to really think that this could be a big problem. I do have surgeons who are more than willing to do the surgery. I just wish they were more optimistic that it would help.

I've seen people who have some experience with Eagle syndrome. I'm just not getting the feeling that they have a lot of confidence that this is really the problem. I'm starting to think that this is such a rare condition that even the so called "experts" don't really know that much about it.

There is an added caution I think because this is a repeat procedure and they have to deal with scar tissue and thinks like that.

I have two options basically. The surgeon could remove the calcified ligament at the lesser cornu of the hyoid or they could also remove the remaining portion of the styloid. I am concerned about facial nerve damage if they try to remove the styloid, but removing the ligament should be safe.

My styloids are about 2 to 2.2 cm which is not long. However, they ARE abnormally thick according to CT reports. I don't know if they are causing any issues or if it is mainly the ligaments.

A plan I discussed with the surgeon is to plan to remove the ligament at the lesser cornu and, only if it seems safe to do, to then try and remove the styloid process if they can access it. The priority would be to not damage any nerves of course.

They claim they can't see any vascular compression from the CT scans but I don't know how reliable that is. I have all the symptoms of vascular compression so I think that should carry some weight!


I've uploaded some more scans, some that I haven't posted before, of my styloids and calcified ligaments.

I'd like to get some feedback on what you think I should do.

Thanks.

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More images:

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Even more:

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A few more:

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As has been said many times before, it's not the length of the styloid but the angle at which it is growing that determines the level of pain and other symptoms. Since you are in CA would you be able to travel to San Jose to get a second opinion from Dr. Samji? He doesn't give a lot of credence to the term "vascular ES". Without asking him, I suspect that ES is ES to him regardless of the subtleties of symptoms. I've had vascular symptoms w/ both styloids, & since he shortened the right one and removed the S-H ligament, I have less vascular symptoms. I'm hoping the remaining symptoms will leave w/ my left styloid when I have my second surgery on 8/24. Having a bit of a lip droop for a few months after surgery is not uncommon, but it also appears to completely go away given a little time. My hypoglossal nerve was wrapped around my right styloid so instead of a lip droop, I had half a tongue that didn't work for awhile. It wasn't numb, the motor aspect just didn't work which made speaking clearly and eating a challenge. I also believe there is less chance for serious nerve damage if your surgery is done by the external approach as everything is more visible to the surgeon through the opening he/she makes in the neck whereas that is not the case w/ the internal approach.

If I were you, I'd go for a second opinion. It sounds to me like you have symptoms worthy of pursuing surgery by an experienced doctor.

:)

6

It is a difficult choice to make, and feel for you faced with that... The styloids if they are unusually wide could compress soft tissues in that area, so if the surgeon's not happy to take them out then you could still have some problems... I had a skull base surgeon remove mine through external surgery, so he took the whole styloid process away. He goes in externally so that he can get as much of the styloid off as possible. I didn't have calcified ligaments though. The vascular symptoms are lots better- I presume the symptoms I still have are from the right side. I still get pain around the area, so hope it's still healing and that it will improve in time.

Did you have the scan with dye injected into the blood vessels? That should show vascular involvement. For me, knowing the jugular vein was compressed so much made the decision for surgery a lot easier.

But having calcified ligaments in that area isn't going to be doing any good either, and presumably they may well continue to calcify further, so having those removed will hopefully help some symptoms. I think for me knowing that the 'offending bits' are removed one side means now I know I've done all I can to solve the problem, and whatever I'm left with is as good as it's ever going to be. If you don't have surgery then you'll always be wondering 'what if?'. Sorry if this is not at all helpful to you, it is a difficult choice....especially as you've had surgery already and it's not solved the problem.

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There missing something involved with this syndrome until they figure it out I wouldn’t go under the knife again they have no clue on what to do besides clip the styloid it’s messed up don’t know how Dr eagle found this syndrome in 1938 but wish that guy was still alive

8

"I'm starting to think that this is such a rare condition that even the so called "experts" don't really know that much about it."

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I agree. I think that doctors just don't know all the symptoms Eagles can cause and they don't realize that shorter lengths can also cause symptoms. As Isaiah said, it's more the angle the styloid is growing. I think often doctors don't take enough of the styloid out and then they don't understand why the patients are continuting to have symptoms.

After having been on the forum for several years now, I now believe that the best way to get the best outcome is to get as much as possible of the styloid and calcified ligaments etc. taken out right away. I think taking parts out at a time is just setting you up for lots of pain in the future as well as diminishing the chances of getting a doctor to do a subsequent surgery if you need one.

Don't let the fact that a doctor is unsure about the severity of the problem stop you from getting a surgery. They really don't know about it and that's easy to understand because we all present with such different symptoms and some get cured by taking part of the styloid out and some don't. Not everyone needs the whole styloid taken out for relief, but some do. But the problem is, you don't know which you are until after the surgey is over.

I would agree with Isaiah also - try to make an appointment with Dr. Samji, especially since you're in California. He's had a lot of experience and he tries to get as much out as possible, which is what you need. You could go see him and then see what you think about what he says.

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I agree Heidi , I'm in a similar boat in that I have a lot of vacular symptoms and have had a mixed read of my styloids by two radiologists. I've got my scans out to three different docs and am waiting on replies. One question: is there any downside risk (functional, etc) to taking most of the styloid out? Thanks, Eddie
heidemt said:

"I'm starting to think that this is such a rare condition that even the so called "experts" don't really know that much about it."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I agree. I think that doctors just don't know all the symptoms Eagles can cause and they don't realize that shorter lengths can also cause symptoms. As Isaiah said, it's more the angle the styloid is growing. I think often doctors don't take enough of the styloid out and then they don't understand why the patients are continuting to have symptoms.

After having been on the forum for several years now, I now believe that the best way to get the best outcome is to get as much as possible of the styloid and calcified ligaments etc. taken out right away. I think taking parts out at a time is just setting you up for lots of pain in the future as well as diminishing the chances of getting a doctor to do a subsequent surgery if you need one.

Don't let the fact that a doctor is unsure about the severity of the problem stop you from getting a surgery. They really don't know about it and that's easy to understand because we all present with such different symptoms and some get cured by taking part of the styloid out and some don't. Not everyone needs the whole styloid taken out for relief, but some do. But the problem is, you don't know which you are until after the surgey is over.

I would agree with Isaiah also - try to make an appointment with Dr. Samji, especially since you're in California. He's had a lot of experience and he tries to get as much out as possible, which is what you need. You could go see him and then see what you think about what he says.

10

One question: is there any downside risk (functional, etc) to taking most of the styloid out? Thanks, Eddie

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Every once in a while that gets discussed and everything I've ever read seems to indicate no downside.

11

Eddie, the whole of my styloid has been removed (yippee!), and that's not made any difference to me. I had some problems with first bite after surgery, and chewing was uncomfortable for a couple of weeks, but has settled now and doesn't feel any different.

12

Great news - thanks



Jules said:

Eddie, the whole of my styloid has been removed (yippee!), and that’s not made any difference to me. I had some problems with first bite after surgery, and chewing was uncomfortable for a couple of weeks, but has settled now and doesn’t feel any different.