Hi. I wanted to introduce myself to this wonderful community by sharing a recent experience I had with a surgeon in the Charlotte, NC area. This support group has been really helpful to me so far and I hope I can also help others in some way which is why I am sharing this.
The symptoms that I’m dealing with (which I now know are likely caused by ES) began in late 2021 although some of the symptoms have appeared in a milder form prior to then. My condition got so bad that I haven’t able to work since December 2021 and have been mostly bedridden for the past 3 months. Like most people on this forum I had never heard of Eagle’s and saw dozens and dozens of doctors trying to figure out what was wrong with me. No one even brought up the subject of ES until this past May when I took a real turn for the worse. My symptoms are consistent with the vascular variant of Eagles: Atypical neck pain, dizziness and vertigo, headaches, several different types of tinnitus including pulsatile tinnitus, nausea, and visual disturbances. Prior to May, I was already sensitive to head movement, head positioning, and physical activity but it was somewhat manageable and I was still able to do things like driving and cooking although often with a lot of pain and discomfort. Now, since I took that turn for the worse, I’m so sensitive to head movements and physical activity that I’m pretty much stuck in my bed most of the day relying heavily on the assistance of others.
Dr. Christopher Jones from Charlotte Eye Ear Nose and Throat reached out to me when I let them know that I was looking for a doctor with Eagles experience. I saw him on June 30th and at first he agreed after evaluating my CT scans and my symptoms that I likely had Eagles and was a good candidate for surgery. When I left his office, he told me they would have the surgery scheduled in 2-3 weeks. Then something strange happened. He started to waffle on doing the procedure and instead ordered a fresh CT scan. Then, he told me he didn’t think the styloids were long enough to warrant a risky surgery. That has left me upset and scrambling to find another surgeon, one who is likely out of network. Hopefully, perhaps with the assistance of this community, I will find the right doctor soon.
I have no idea why Dr. Jones went from being certain that my styloids were elongated and believing I needed surgery to completely flipping on me and not only canceling surgery but now trying to convince me that my styloids are not actually elongated. My theory is that they realized I have the vascular variant of Eagles and either could not or would not be honest with me that they aren’t equipped to deal with that.
I would attach images of my styloids but I don’t have the permissions. Has anyone else in this community dealt with Dr. Jones or CEENT? What about navigating the difficulty of traditional Eagles versus the vascular version when dealing with doctors? Thanks for any feedback you could give me especially those in the Carolinas.
Might be better to reach out to Dr. Hackman, he is one of the best for ES. Lots of testimonials for him. You will get permission to share imaging soon. Technically Hackman doesn’t do VES, but you will read folks with VES symptoms have seen him and had good results. I always remind folks he doesn’t touch C1, so if a C1 shave is needed you will need to see someone else. Fargen, Costantino, and just recently Cognetti are your closest options.
I got a bit excited when I started reading your post & thought we’d got a new doctor we could add to our list but obviously not! I’m sorry that your time has been wasted but I agree that maybe he realised it could be a more complicated surgery…I think some doctors do have case reviews with peers so possibly that happened & others raised concerns? Anyway, it’s better to find out now than to have a surgery which ends up not being helpful because a doctor hasn’t done it before…
As @Andy89316 says, Dr Hackman has done many successful surgeries, although doesn’t check for decompression of the blood vessels like a more experienced vascular surgeon would. Dr Fargen is very knowledgeable about VES & will diagnose it but I’m not sure how many ES surgeries he’s done, maybe others could give some info on this. Otherwise Dr Costantino in NY is very experienced & has done lots of surgeries; often the styloids can compress blood vessels between them & the C1 processes, so sometimes the C1 does need shaving too, he would do that.
I’ve altered your ‘trust level’ so you should be able to attach images now if you want, & we could maybe give you an idea if the C1 is involved as well?
@jrhode2873 - Welcome to our forum. I’m sorry for what Dr. Jones did to you & especially that it seems he wasn’t totally honest when he cancelled your surgery. I suspect that what @Jules said may be correct. Dr. Jones realized your situation was one he didn’t have experience dealing with so he simply begged out but didn’t give you a thorough explanation.
What many doctors who know about ES don’t understand is that a styloid doesn’t need to be longer than normal to cause problems. Physical features such as how thick or curved they are, the angle their growing, if they’re twisted or exceptionally pointed, have calcified “knobs” or bumps that make them not be smooth, etc. can all cause symptoms in the absence of elongation (Dr. Hackman is one of the few who acknowledges that styloid length isn’t the only criterion for judging whether a styloid is causing symptoms or not). Additionally, what is considered elongated can be inconsistently judged i.e. every doctor may have his/her own definition of how long is too long.
Posting your images, as you’ve planned, can help us to give you our non-medical opinions which may help point you in the direction you need to go as far as deciding on whom to see to get help.
Thanks. Dr. Hackman is on my list to call next. Reaching out to Dr. Osborne and Dr. Gillespie(Charlotte) first. Thanks for the advice on navigating ES vs VES. I have learned it can be difficult.
Thanks. I had an interesting back and forth with Dr. Jones today. He admitted he is not familiar with VES and doesn’t consider himself an expert on Eagles. Sounds like I avoided surgery with the wrong doctor. I have a video call with Dr. Osborne next week and I’ve also reached out to another surgeon in Charlotte (Dr. Gillaspie who is on the list). After that, Dr. Hackman is next on my list.
Thanks for the updated permissions. When I’m feeling better I will do another post with images. My styloids are 2.6cm(according to Dr. Jones) but you can see from the images the possibility of VES is there.
Dr. Jones admitted to me today he is not equipped to deal with vascular Eagles. It’s terrible that he left me hanging for 6 weeks and didn’t even reach out to see how I was doing. When my brother drove me to his office back in June, I was in pretty bad shape. Could barely walk because of the sensitivity I have to head movement.
I will make a separate post with images. You can see the styloids look quite menacing despite only measuring at 2.6cm. Like you said, the shape of the styloids seems to matter in my case.
@jrhode2873 any throat pain? I’d like to see the axial view of your C1, but also your hyoid bone just in case. Sometimes the greater horns can dig into the carotids (like in me for instance), and since the hyoid is attached to the styloids it’s often worth look at it.
With the vascular symptoms you have, I’d suggest you also consider an appt w/ either Dr. Costantino or Dr. Cognetti since they specifically do IJV decompression surgeries w/ styloidectomies if the styloids are part of the problem. Dr. Hackman & Dr. Osborne are excellent ES surgeons, however, if C1 is a bigger problem than your styloids, you might be looking at a revision surgery if either of them do your initial one. The key will be seeing what your imaging shows.
Only when my neck pain is really intense, my throat will feel inflamed. But it’s way down the list of symptoms. Same with swallowing issues- I do have some but it’s infrequent. My main symptoms are neck pain and head movement triggered dizziness and headaches along with several types of tinnitus and visual disturbances.
I have an appointment with Dr. Gillaspie (he’s on the North Carolina list) on Thursday. I already confirmed with him he has VES experience. Know anything about him?
The visual disturbances has me wondering if one of your carotids are being compressed, either by a styloid upon head movement and/or hyoid or soft tissues. The headaches are most likely IJV related though. Dizziness can be IJV, carotid, and/or vagus compression. Won’t have a good idea until I see your imaging.
It’s good news that Dr. Gillespie knows about VES. Be sure to ask questions about his surgical protocol when you see him so you know exactly what his approach will be if you choose him to do your surgery. Here are links to a couple of posts that mention Dr. Gillespie:
Visual disturbances/changes can also be due to IJV compression. There are several symptoms in common w/ both jugular & carotid compressions so w/o being able to see the situation in your neck, it’s hard to know for sure what could be the main cause of your symptoms.
@jrhode2873 Not many members that we know of on here have had surgery with him, but that’s not to say he hasn’t done many! There’s some suggestions of questions to ask a doctor when consulting about surgery, obviously as you may have vascular ES you would need to ask about his experience with that, whether the styloids would be removed to above any compression, and whether he looks to check blood flow is restored in whichever vessel is compressed:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider.