Just diagnosed. Feeling relieved but scared. Which surgeon would be best?

General
1

Hey all!

After years of symptoms ramping up, tons of doctors, tons of tests, and being told I’m fine and it’s anxiety… I finally got a CT that showed bilateral stylohyoid calcification indicative of Eagles Syndrome.

I cried bittersweet tears of mostly relief of knowing finally what was going on.

I’m not sure how mine started. I’ve always had neck issues due to a congenital eye disorder that makes me hold my neck in weird ways to steady my eyes. It’s still out whether I have EDS as well as not all my joints are flexible.

At the age of 26, I had acute salivary gland infection that cause my entire neck to swell for weeks. Not sure if that did anything. Then a couple years later, I cracked my neck and woke up with intense burning, heart palpitations, dizziness, and then started getting migraines. Shortly after, I had a filling and got lock jaw that lasted a few weeks. My symptoms have always ramped up after doing neck manipulation whether through yoga stretching or sometimes I would hang my head off the bed for relief which would cause intense burning at my skull base etc etc. Anytime I wore a mouth guard, my entire body would go haywire.

I’ve had a couple ER visits due to suddenly getting double vision in my right eye that lasted 6 months, jaw/throat numbness with difficulty swallowing. It’s all been really scary because it usually happens following something very benign.

This last flare has been horrible. I started doing PT and seeing an osteopath for OMT. Anytime they worked on my ribs and shoulders I would feel great. Anytime they would do neck releases/stretches I would have a huge flare. They kept telling me I was fine and it’s probably my health OCD.

I saw some posts on Reddit about Eagles and thought it sounded like what I experienced. I told my PCP I think I have Eagles and I called around all the Oral Maxiofacial docs in my area and only found one ENT familiar with it at all. He told me I probably didn’t have it. He and my PCP ordered a face and neck CT. Both came back indicating Eagles.

It has been such a long exhausting journey. I’ve had issues with family and partners over the years because no one believed me. Now, I’m focused on doing whatever I can to help this. I want to make sure I’m doing the right thing and making sure I find a specialist for my needs. After seeing the pictures of scars, I’m really scared….Im scared that if I get surgery…what if it doesn’t help and then I’m left with these scars…

I have some questions that maybe you all can help with. Here are my current symptoms that recur off and on: Burning pain, numbness at times, and dull ache around jaw, throat, neck, top of cervical, base of skull, eye pain, blurriness, head pressure at times if I stand straight, back and chest pain, sternum pain, shoulder and trap issues, dizziness, feeling fatigue if I stand straight at times, anxiety. I am 36 F and diagnosed with borderline osteopenia, have congenital cervical stenosis, a couple bulging discs in my neck, weakness and instability towards the top cervical (it has always felt like there is something pulling my neck like a zip tie or something which I think has caused most of my neck issues). Chin tucks or any neck stretch/exercise makes it worse.

My questions:

  1. Are there additional tests I should get now to show any compression on veins or nerves? I’ve had numerous brain/head/neck MRIs with contrast and they showed nothing. They were all laying down and most of my symptoms occur if I’m in a certain position. Is there another test that could how compressions better?
  2. Which surgeon is seen as the best? A lot of people have great things to say about Dr. Hackman and the fact he does both sides at one time. But, the incisions/scarring from his surgeries look a little more severe than others I’ve seen??
  3. Is it best to take the entire stylohyoid out? Some say a little is left behind; some say the entire thing got taken. Is there benefit to having some left behind? Without a stylohyoid, is there any issues caused like further instability?
  4. Please offer any words of guidance or advice you think would help me at this stage.

Thank you so much and sorry for the long post!

2 Likes
2

Hi & welcome (again!),
I’m so glad that you have answers to the pain & other symptoms you’ve had for years, it’s so hard when doctors and especially family don’t believe you! I’m glad that you have the vindication now at least, now to get the right treatment!
Just to tackle the scarring issue you’ve raised- the incisions can look a bit scary when members have posted fairly soon after surgery, but most settle down surprisingly well and are done in a natural crease of the neck so can’t be seen at all. Certainly the experienced ES doctors do that, so it’s not something to worry about at all…

  1. A CT with contrast should show the blood vessels in the neck, & some members have been able to get them done dynamically , with their head in the position which causes symptoms which should show any compression best. Some members have also been able to get ultrasounds of the neck blood vessels, & this can be done dynamically too; although it is useful, it’s not always an accurate guide of pressures. A more invasive test is a catheter venogram where the pressures inside the IJV are measured, but there are risks with this. If you were to try & see one of the experienced vascular ES surgeons, they often like to order specific scans & tests with doctors that they know will do the tests the best way, so if you were thinking of seeing one of those doctors it would probably be best to wait & see what they want. ( Dr Hepworth, Dr Fargen, Dr Costantino & Dr Nakaji are the most experienced VES doctors for anyone else reading this!)
  2. Dr Hackman has done many successful surgeries, & getting both done at the same time is a draw for many people, but there can be more swelling and a tougher recovery. He does seem to do incisions in the neck & in front of the ear as you’ve seen, but I don’t think the scars are that visible later, hopefully others who’ve seen him can comment! He doesn’t do all the vascular testing & checking for other tissues compressing the blood vessels during surgery that the above doctors do though, so maybe not the best choice if you do have vascular ES.
  3. The best surgical solution is to take the styloid process back to the base of the skull, but it isn’t always possible because sometimes nerves get in the way & it would potentially damage them to remove more. Alot of the experienced ES doctors monitor the nerves during surgery to check that they’re doing the surgery as safely as possible. Inexperienced doctors often just shorten the styloid process to ‘average’ length, which isn’t always enough to get rid of the symptoms. The stylohyoid ligament if it’s not calcified is usually detached from the process (and the other ligaments) are left in, apparently they can be reabsorbed by the body I think a doctor said…most people don’t notice any difference in swallowing or speaking etc without the styloid process. We’ve been asked quite a bit about whether removing the styloids can cause instability (and also when the C1 processes are quite long & also compressing the blood vessels), & the answer unfortunately is that we don’t know! Some members have felt it’s made CCI worse, others not noticed any difference, & I think the doctors disagree on this too!
    My view would be to see the most experienced doctor that you can, even if it means travelling…and avoid any of the neck stretches, chin tucks for now… Be aware that the surgery may not fix everything straight away too, you obviously have other things going on with your neck to complicate matters :hugs:
2 Likes
3

Thank you so much for your thoughtful reply!

Do have more information about the c1 process and its involvement?

From the reading I’ve done, it seems like trauma or posture somehow cause the styloid process to elongate or calcify. However, in my case it almost feels like the opposite: I feel like a lot of my neck issues occurred because I’ve always had this pulling sensation or feeling like my head/neck were trying to “avoid something”.

Now, I do feel like there is something tugging down on my c1 or c2 and pulling them out of place at times. If I tilt my head back, it feels like something is pulling my head backwards from that area as well and is connected to somewhere in my back?

Do you know more about the c1 process or how any of this relates to Eagles?

4

We’ve seen quite a few members with C1 causing compression on the IJV too, if you use the search function (magnifying glass icon) to look for that, it should come up with quite a few discussions!
I don’t know what’s causing the pulling sensations in your neck; maybe others who’ve had/ have CC! could comment on that, if it’s perhaps to do with that? Maybe your ligaments have stretched because of instability and then repaired themselves making it tight :woman_shrugging: Otherwise it could be a vicious cycle of pain, muscle tension, trapped nerves, more pain, more tension etc pulling on your neck, that’s common with many of us?

1 Like
5

I am doing PT with someone who teaches it. I have made it very clear that I am skeptical of the typical things they do for a “regular” person based on past experience. We aren’t regular people.

Traction with his hands on my neck helped. Towel under the neck? Forget about it.

We are focusing on things below neck like stretches in a door frame which does seem to help. The theory is to perhaps just peel off issues like an onion and it might help what we can’t directly address. Also, doing arm stretches when you stand straight and stretch slightly down your leg with your arm without bending. It seems to open things up. This is a version of what he does by pushing down on the shoulder while I lay flat.

I have to get surgery. I trust NO ONE but I will have to roll the dice with someone. People are limited by financial issues. For me, I will do everything I can to get to a surgeon who has done many of these Vascular surgeries and has had to adapt to all kinds of tangled mess created by the styloids.

So Constantino, Hepworth, or maybe Osbourne. I would consider Nakaji but I can’t do an awake IR manometry so he might not be a choice since it appears he requires it. I was impressed at the way he handled a recent surgery from a poster here.

I plan on seeing Dr Old in Ohio but I suspect he is one of those that haven’t done a lot of this kind of surgery.

One thing to try is even if you don’t think you will use a surgeon you can get an opinion if he will do telehealth. It can help make your case with insurance and I think more than one opinion by people who know what they are doing is helpful. I don’t think very many will do telehealth out of state anymore.

3 Likes
6

I think this is the approach I need to take with my PT as well. He is really good but wasn’t familiar with Eagles when I brought it up. To make matters more difficult, I’ve been struggling with a form of costochronditis after a friend cracked my back pretty aggressively a year ago. So, my entire rib cage seizes up and causes a whole slew of issues.

May I ask why you can’t do that certain test while awake? Or why you would need to? Is it really painful?

I am like you: I don’t really trust anyone anymore especially after I’ve been invaldiated by PT and doctors for years. I want to make sure I find the very best surgeon. I don’t care how much money (even though I don’t have tons of it). I just want to make sure I get this treated and don’t make it worse. I would love to know who you end up going with!

2 Likes
7

My PT had heard of Eagle Syndrome but that is not enough. I took in pictures to show him. I used ones that I did on the Radiant App . In my last visit I took one in that Isaiah had notated for me from the CTA image without Radiant. The PT could clearly see the jugular impingement (maybe because Isaiah had drawn attention to it with three lines) The ENT surgeon and the Neurovascular surgeon missed it. The neuroradiologist caught it.

I have very weird genetics and medication issues. (Oxy doesn’t work on me or if it mechanically does it is very little) For the moment I am going to assume I can’t do an awake IR manometry because of problems I have had before with “awake” procedure decades ago. For example, they were trying to do catheter through the groin to check out my heart while I was awake. They had to knock me out to do it.

The consensus among the elite who deal with this as per the poster is that it needs to be done while awake because you can get false readings while asleep.

If push comes to shove and I really have to do something while awake I will try it but for now I am circumventing it.

2 Likes
8

As per Dr. Hepworth & Dr. Yakes (vascular surgeon) awake vs asleep doesn’t affect the results for an angio/venograms w/ manometry. The difference I can see is asleep the patient is more relaxed which could produce lower pressure readings than when awake. This in turn could affect a diagnosis in a case where that subtle difference might be critical to the diagnosis.

Dr. Osborne doesn’t do IJV decompression surgeries per se. He recently told one of our members at an initial consult that he deals with it during surgery if he sees it but doesn’t look for it. This seemed a bit ambiguous to me since he removes styloids close to skull base so IJV compression, if it exists should be evident w/o him having to “look for it”.

9

I dont like this idea of osborne not looking for it. This strikes him off for me even though he might be a brilliant surgeon .

I dont remember all the details from the nakaji patient concerning awake versus not awake. I just remember her saying consensus was to do it awake. If nakaji requires a certain measurement to do surgery i would be afraid it might be missed if I was asleep.

Although, it seems to me some of us should be able to tell without that test if we are a candidate for surgery.

1 Like
10

One of our members co-authored a paper for PTs about ES, here’s a link, it might be helpful if you do find someone:
WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article - General / Research Papers - Living with Eagle
It doesn’t help that we’re all different and what might help one is a big no-no for others! I did very gentle chin tucks laying down which helped the muscles at the back of my neck, but others have been told definitely not to do this if you had IJV compression! And I had traction & manipulation done when I had my whiplash injury 25 years ago- it was supposedly the best treatment at the time, but it was agony for me & made it so much worse! I just thought I’d throw that in there as @JugularEagle mentioned traction helped her!
Poor you with costochondritis too :hugs:

2 Likes
11

This is incredibly helpful! I’m going to give this to my PT and DO.

2 Likes
12

It might depend on type of traction. I can’t remember what I had done when I had whiplash. I think I was seeing a chiropractor at that time.

The kind of traction the PT is doing on me is a gentle type of traction with his hands. He gently pulls my head/neck up relieving pressure. There is another version he does that I can’t really explain that is more around my skull base. Both help. But when he showed me what to try on my own with a towel it was a definite NO. I am going to try to the table traction to see if that helps but it might be too much or it might hit me in the wrong spots.

I could definitely tell that if he had been inexperienced and placed his hands in the wrong spot it might not have been helpful.

It really is so specific to a particular person that you just have to try to see what happens.

I am pretty sure the device that you do at home with a chin strap over the door would be a disaster for me. That one I won’t even attempt.

2 Likes
13

Dr Fargen? Dr Costantino? & Dr Nakaji ?

Hi Jules, I know there is a list of the doctors but could you please tell where are these doctors from?

14

I totally agree, but some doctors want to make sure the constriction is bad enough it’s causing blood flow issues that are significant enough to require a surgical fix as symptoms alone may not be convincing enough. Just a guess on my part, but you could certainly ask a given doctor why a particular test is required i.e. what info will be gained from the results.

1 Like
15

@Luba - Dr. Fargen is in North Carolina, Dr. Costantino is in New York, & Dr. Nakaji is in Arizona.

•Dr Fargen Kyle M. Fargen, MD, MPH, FAANS | Atrium Health Wake Forest Baptist (wakehealth.edu)

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .

•Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
https://doctors.bannerhealth.com/provider/Peter+Nakaji/1103456y_source=1_MTQ4NjU5MDktNzE1LWxvY2F0aW9uLndlYnNpdGU%3D

16

Sorry, here’s a link to the full doctors list which is in the doctors info section in case you want to look up any others:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle

1 Like