A Note About the Doctors on Our Lists

Every doctor on our list has his or her own opinion about what defines Eagle Syndrome, and every doctor has his or her own surgical strategy for treating it. Over time we have learned that there are some doctors who are more experienced than others in doing ES surgery, HOWEVER, that does not mean they are able to provide a perfect outcome for every patient. Even the most experienced surgeons may leave some calcification behind that later requires additional surgery so symptoms can be more completely eradicated. Though this may seem disreputable on a surgeon’s part, each surgeon has to decide during surgery how much calcification can be safely removed without causing permanent damage to nerves & other soft tissues in the area. The surgeons usually err on the side of caution, thus they may need to remove less calcification than intended rather than risking a permanently debilitating or disfiguring problem for the patient.

We have recently had several patients comment that their ES pain & symptoms either didn’t end after surgery or that those have returned. In some cases, not enough styloid was removed &/or a section of calcified ligament was left behind and that seems to be what causes the continued or new nerve pain/other symptoms. There are a few doctors who do revision surgery for ES so these patients are not without hope of more complete recovery.

It is vital when interviewing a doctor that you clearly understand his/her surgical approach & the extent to which (s)he will remove elongated styloids and/or calcified stylohyoid ligaments. The best case scenario is for all calcification to be extracted from skull base to hyoid bone if possible - remembering that even though that may be the surgeon’s goal, your physical construct may prevent his/her ability to fully & safely execute that plan.

Many of our forum members have had great surgical experiences but others have not. Those who have done well tend to leave this forum and go on w/ their lives. Those who remain are the people who are awaiting surgery or are struggling with post op symptoms, and that skews the way our forum appears, in some respect, by making it seem like surgery isn’t very helpful. Regardless of your situation, we are here for you, to listen, encourage, support, and pray for you. We all understand how difficult & life changing ES symptoms can be. As your moderators, we have been there.

:hugs: :pray:t3:
Isaiah_40_31 and Jules

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Thank you. I love the way you both frame things. It is all about perspective and supporting each other. We are so fortunate to have this community board

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Thank you @bmcdiddie! We both received so much encouragement & help from this forum when we were suffering, we decided it was important to give back, so here we are!

I’m still praying for you to find a doctor to do your ES surgery and soon! I’m so sorry for your pain & other symptoms. :gift_heart:

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I totally agree with your sentiments. IM sorry I havent been able to post more since my 2nd surgery in early December. Ive been dealing with a family medical emergency as well as an employment emergency on top of recovering from surgery itself. I moved on from one job to a new one that has been very stressful. Its left me so exhausted I couldnt do my usual participation here. On the good side, I didnt have the time to share more about my recovery or even focus on it. So far so good at about 16 weeks out although I still have numbness that is slowly going away.
From a patient advocate and paralegal prospective, it is good to write down ALL your questions prior to pre-op or consultation especially about the surgeons approach to surgery, skull based removal vs not and whether the surgeon takes out all calcifications. Post op meds, etc. External vs internal.
I always request the consult report at the desk when I check in and sign release of records and follow up by phone within 1 week to ask if it has been sent. Keep in mind that NOT all patient portals have the full consult reports or other detailed information beyond just a summary. If you don’t see information or answers in the consult report prior to surgery in that consult report, get clarification “in writing”. This is especially true post-op. Request a Post-Operative report that will detail surgery procedure - many patients dont know to ask for this. Often the doctor may talk to you after surgery while you are coming out of anesthesia…much of what you never will remember. I have found personally that by the time I get to a post-op follow up visit, the doc doesnt remember the details of your surgery (after already done many since yours) and some of that detail is not in the report and honestly lost forever. It always nice to have someone there to get the information after surgery but COVID has changed this for the the worse.
Along the process of pre and post op surgery, I request “ENTIRE” medical records from the surgeon and the hospital/ surgery center. This includes pathology reports. I want to see down to every minute detail what has been done to me and what obstacles were encountered during surgery. I also get all CT/MRI scans on disk and the reports as soon as possible after they are performed.
Based on my own personal experience and others recently, I wish I had done more of the above and I am a seasoned patient advocate.
Do your homework, ask questions and gather all the documentation available to you. You always have a right to your records for your own personal use. I hope that helps.

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Well said, Snapple2020! Thank you for your additions!

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Hi, Isaiah, I am a Christian also! I was diagnosed with ES last week by my vascular surgeon. He did not look at both sides bc only my left side has symptoms. I was diagnosed by a venogram. He didn’t look at the other side bc I have no symptoms on that side. Should I be concerned about that? Also, I have autonomic syndrome, gastroparesis and PCS, NCS, neurogenic MALS. My neurologist did a bunch of good tests. They showed very high B12 and Folate but nobody but me is concerned about this. My hemoglobin and hematocrit are slightly elevated. I don’t take supplements and my diet definitely does not consist of these vitamins. Should I be concerned about this also, prior to surgery? I was going to have my vascular surgeon do this surgery but it looks like an ENT with knowledge about this is a better option? Thanks and God bless

Hi Kbrowning11,

I’m glad to know we share a common faith. Feeling that I was in God’s hands during my ES surgeries kept me calm & positive. I figured whatever the outcome, it was what He had for me, & He would be with me all along the journey. I hope you find that same peace as you make decisions about what your next steps should be. :blush:

I’m sorry that you have several health challenges going on. I’m not sure what NCS is, but I read that gastroparesis can be a symptom of MALS & there is a laparoscopic surgery that can be done to relieve the vascular compression caused by MALS. Additionally there is a somewhat minor surgery that can help reduce symptoms of PCS. Did your vascular surgeon discuss these with you? It would be so nice if your life could get back to a more normal place!!

We have had past members who had successful ES surgeries done by vascular surgeons. If your surgeon is a skull-based surgeon who feels comfortable & confident working in the area where the styloids are then you are probably safe letting him/her do the surgery.

In some cases, the transverse process of the C-1 vertebra also contributes to IJV compression (the IJV is sandwiched between the styloid & the C-1 TP) & removal of the styloid is not enough to decompress the IJV. In those cases, the IJV is sometimes moved over a bit or the C-1 TP is shaved or otherwise modified to make more room for the IJV. It would be good for you to find out what he would do if he finds C-1 to be a contributor to the compression.

Here are some questions for you to get answers to prior to committing to surgery w/ this doctor:

Are you a skull based surgeon? (most important to know as skull-based doctors often operate in the area where the styloids are so are familiar w/ the nerves, vasculature & other soft tissues in the area.)

Have you ever done a styloidectomy? If so, how many? What was the general outcome i.e. Did patients’ symptoms subside over time? Any complications?

Do you work w/ an ENT or neurologist or do the surgery solo? (Some ENTs operate w/ a vascular surgeon or neurosurgeon, or both, in the wings, just to be safe). My ENT did my surgery solo, but I didn’t have any vascular issues.

As far as the other styloid goes, it’s a good idea to know whether it’s elongated in case of a future problem. Both styloids should have been visible in your CT scan unless the radiology tech was limited by doctor’s orders to only looking at one side. You should ask your vascular surgeon to please look at & discuss the other styloid w/ you as well if possible.

Regarding your high B12 & Folate results, it might be worthwhile getting re-tested to confirm that the results weren’t a fluke (unless you’ve previously had similar results). It is possible that the gastroparesis/MALS is causing an absorption issue so your digestive system isn’t processing those B vitamins properly & they’re building up in your blood stream. I don’t know if there are harmful effects from the B12 & Folate levels being high, but it would be worthwhile talking to your PCP & perhaps vascular surgeon about that since your neurologist didn’t seem alarmed. There is nothing wrong w/ getting 2nd & even 3rd opinions where health is concerned.

I’m sorry this has gotten so long, but I tried to address your concerns thoroughly. Hopefully members who have other opinions will chip in.

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Thanks so much Isaiah, that answered a lot of questions and I appreciate it. I had all my compression found on a venogram that was on my left side but I thought it was weird that if one side is long, why wouldn’t the other side. Yeah I’m definitely getting that checked out.
I feel the same, I know God is carrying me through this, so I pray for His will to be done. Thank you and many prayers :pray::two_hearts:

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So it sounds like you haven’t had a CT scan to diagnose ES but only a venogram? If that’s the case, I think it’s a first on here.

If your vascular surgeon was very familiar w/ ES, he would have sent you for a CT scan to definitively confirm the diagnosis. You should ask for that before you have surgery. Getting one w/ contrast will clearly show where the styloid is compressing the IJV & whether or not C-1 is involved. I’m not as familiar w/ venograms so am unsure what can be seen besides the venous compression.

Yeah I was curious bc with a venogram it looks at the veins but only on the left. I was wondering how he would know if I had it on both sides?