Hello all - it had taken me a few months to get my CT scans, do a telehealth meeting with Dr. Osborne, and just today have an in-person consult with Dr. Keith Sale. I thought I’d share my thoughts and also have a couple questions that I would love some insight on.
Both doctors were kind and thoughtful and seemed to be good listeners, and I really appreciate that. They both were easy to talk to and opened up enough space for me to share about my experience and ask any questions, which I think says a lot in this day and age. I would feel comfortable to do my surgery with either of them. I live in the KC, MO area though, so I would naturally go with Dr. Sale due to distance.
Where my questions come in:
Both doctors basically felt I was in a bit of a “gray area” with Eagle’s - Dr. Sale described that my styloids weren’t particularly long or the angle wasn’t dramatic in anyway - they are both around 3.5/4 cm vs the standard 2ish. I have wondered about this, too. I was hoping these appointments would confirm the symptoms and make things more clear cut for me - i was expecting an “Oh yes, you definitely have Eagle’s” but as Dr. Osborne put it, it’s a “probably”.
So this brings up some confusion in me - to get surgery or not? My symptoms are: the sensation of getting poked in the throat constantly. Ear pain/pulling. Sore throat feeling. Tightness across throat when I rotate my head all the way in one direction. Increased symptoms when I work out or do a lot of physical activity. I can function and do life, and sometimes it’s less than others, but it is always constant.
Dr. Sale said he would be happy to do the surgery if that’s what I decide.
• I’m curious to hear from those who have seen and heard from folks in this space - does length/angle affect these symptoms? Can being even just a little bit longer than average cause these symptoms? Is there anything else I should try? I’ve had these symptoms for four years now.
I was hoping for more solid answers and clarity, but overall, I appreciate both of their honesty and I don’t feel any pressure or expectation.
This describes my situation exactly prior to my ES surgeries. I was a long distance runner & was working w/ a physical trainer at the time I was diagnosed w/ ES. I was able to “do life” & exercise hard, but definitely had worse symptoms after exercise & sometimes even w/o any physical pushing. Though my symptoms were different than yours, they almost completely went away once I had my surgeries.
Your symptoms are very typical ES symptoms i.e. sensation of getting poked in the throat constantly. Ear pain/pulling. Sore throat feeling. Tightness across throat when I rotate my head.
I also had tongue & other mouth symptoms, face pain, & some heart/blood pressure symptoms during hard exercise. I can guess that the nerves being irritated by your styloids are your glossopharyngeal nerve (GPN)/vagus nerve - throat poke sensation, sore throat; ear pain/pulling - GPN/trigeminal/facial nerves (1 or all), & the feeling of tightness could be from the GPN/vagus nerve. These all cohabitate in your neck in the “neighborhood” of the styloids. We’ve had a couple of members who had significant ES symptoms from normal length styloids that had odd physical features, so even though yours aren’t super long, they’re plenty long enough to cause trouble.
Other options besides surgery you can try are taking an Rx nerve pain medication such as Gabapentin, Amitriptyline, Carbamazepine, or some other type. An Rx muscle relaxant has been helpful for some members, too. Both types of Rx meds do have side effects though.
Icing your neck for 15-20 min several times/day can help reduce nerve pain. Gel packs that can be frozen or heated are a good option because some people prefer heat to ice for pain relief. OTC 5% lidocaine patches applied to the neck have been helpful for some members. They are also available in Rx strength of 7%-10%.
Based on my experience & those of many other members here, I think you stand a good chance of being relieved of the symptoms you have if you get your styloids resected.
Thank you for your thoughtful and thorough reply! Yes, ever since ei learned of ES I have felt certain that that is what I’m experiencing, and that surgery was a good idea.
My next question, if you don’t mind:
Dr. Sale says he removes up to about 1-1.5 cm of the styloid bone (meaning he leaves that amount). I know I’ve read that the recommendation is to go as far back as possible - I didn’t know if what he described meets that criteria? Thank you!
In your case, removal of 1-1.5 cm will leave styloids that are about normal length i.e. ~2 cm (average is 2.54 cm/1 inch). Our members who’ve had Dr. Sale do their ES surgeries have generally had good outcomes, however, on this forum overall, it seems that having the styloids resected closer to the skull base than that both reduces the risk of styloid regrowth & their ability to continue irritating nerves. You can use the magnifying glass icon in the upper right of this page to search for posts about Dr. Sale to see what others who’ve seen him have said i.e. type Dr. Sale in the search box when it comes up.
Dr. Coughlin in Omaha, NE, has done ES surgeries for a couple of our members who had good outcomes. If you’d like to get one more opinion & find out how short he cuts the styloids, he’s not as far from you as Dr. Osborne plus likely takes insurance.
•Dr Coughlin, Methodist Hospital, Omaha (Head and Neck Oncologist, has done external skull base surgery 7-10 times, and steroid injections) https://www.mhsdoctors.com/physicians/11116003
I wish I could tell you to “Go for it!” w/ Dr. Sale, but based on my own experience, shorter is better from the get go. I had to have a revision surgery for my left styloid which wasn’t cut short enough i.e. I’ve had 3 styloidectomies. My original surgeries were done by Dr. Samji in California.
Oh how I wish Dr. Sale did skull based, that would have made my life a lot easier since he’s so close. When I met with Dr. Osborne, he also recommended skull based, and I’ve read about it here on the forum so I will.hold that as my standard. Dr. Sale also said that the styloids don’t grow back, which I thought was interesting, since I’ve definitely heard from people that they do. I’m sorry you had to go back and get it done again, that sounds disheartening. How have your results been? Thank you!
I wouldn’t stress too much about Osborne’s “probably.” When I spoke with him, he emphasized the point that it makes him very uncomfortable that the success of the surgery is based on patients’ subjective reporting of their own symptoms, rather than hard evidence like imaging or labs that show a clear difference. He doesn’t like that he can’t measure it precisely. So he is careful when it comes to predicting outcomes. He told me something similar.
Thank you for that - I was surprised yo hear that from him but your explanation makes sense. I’m sure it’s a tricky place to be in as a surgeon when it isn’t so black and white.
@Jem@tkk I understand why he is cautious about predicting outcomes based on symptoms alone, but there is another important piece to this. Dr. Osborne does not routinely obtain follow-up imaging after surgery, so when he talks about whether surgery was successful, that assumes the styloid was removed far enough to relieve compression of the IJV or surrounding nerves, etc.
That is not always the case. I continued to have symptoms after surgery and still have IJV compression. On my left side, a substantial portion of the styloid was left below the skull base, and others on this forum have also reported residual styloid after surgery with Dr. Osborne.
I’ll attach my postoperative 3D images for visual context, left post op, right post op and right pre op. I know 3D reconstructions have limitations and shouldn’t be used alone, but the ongoing compression was noted before my recent arcuate foramen surgery and can also be followed on the axial source images.
So subjective symptom reporting is only part of the issue. Without appropriate postoperative imaging, there really isn’t an objective way to confirm that the intended decompression was achieved. CTA/CTV is useful because it can evaluate both the remaining styloid/bony anatomy and its relationship to the vascular structures, so it is useful beyond only vascular Eagle cases. Dr. Osborne does not routinely obtain postoperative imaging. This is also something you may want to specifically discuss with him before surgery if you decide to move forward with him.
@Isaiah_40_31@Jules can correct me if I’m wrong, but I believe postoperative imaging is more commonly part of follow-up with some of the other surgeons discussed here. I know Dr. Liu performed follow up CTA immediately after my surgery for the bridged arcuate foramen and I have read on the forum he also follows up with additional imaging at 3 months for his Eagle patients.
I do agree with @Isaiah_40_31 that your symptoms are typical of classic ES, so as long as the styloids are shortened enough, the surgery should help. Personally I think 4cms styloids , especially for a woman, are pretty long! As you’ve managed a while without surgery, it’s probably a good idea to have a good think about who you see, and whether you want to take the chance that Dr Sale’s surgery would be enough to resolve symptoms, or whether if it’s possible, to get another opinion.
@MGORNEAU , I think some of the VES doctors do post-op imaging to see if the blood vessels have stayed open, but it’s not generally done as a routine for classic ES.
I agree w/ @Jules that it’s more common for post op CTA/Vs to be done by doctors who do IJV decompressions for the reason she noted. I think in cases of classic ES where symptoms remain significant beyond 6 months post op some doctors will order a follow-up CT scan, but getting one can also require some pushing on the patient’s part.
@Jem - The results since my third ES surgery have been very good. It stopped trigeminal nerve pain which had recurred, & the IJV decompression stopped the progression of my left hearing loss & the related vertigo episodes.
@JULES Thank you for the affirmation! I felt a little doubtful and lost hope for a minute there, that maybe I was getting it wrong. But it has been 4 years, I know that what I’m feeling is not just a tight muscle or something!! I have Eagle’s, there’s no doubt in my mind.
