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Eagle Syndrome - Online Support Group

Deciding on eagle's surgery

Hi @Luci,

Sorry to hear about the experience your husband has with being diagnosed with ES. Since the symptoms can be changing before they can become constant enough to be able to verbalize them, the Drs easily lose patience. The statistics based on some researchers indicate that there are not enough specialists in the ENT world that can understand a patient or diagnose them properly.

I had my surgery done on April 20 by Dr Samji and I am recovering really well. He ended up being in my county so I was able to get diagnosed in 4 months. However I went through hell before I was referred to an ENT office, so I can relate. You can look at my journey here.
ES Journey

Each one of us has started our Journey by deciding on an experienced Dr, who can provide the right guidance. Use this reference of Drs by State that have demonstrated knowledge or experience in working with ES patients: US Doctors - ES experience.
It is also very important where this Dr performs their surgeries. In the era of COVID - 19, hospitals are hot zones for infections. Surgical centers are less likely to have high infection rate, because checks are made for everyone that enter the facility. I mean everyone on staff including patients.

My surgical experience is also detailed i this post.
ES Surgery

I first tried the non surgical option which was recommended by Dr Samji. This method entailed taking Gabapentin. I wrote about my experience in this post, which I hope it can help you in the process of talking to a local ENT to start the process prior to scheduling your husband’s surgery.
Gabapentin effects and side effects

If you need any assistance locally in California, I am available to help. Just let me know in a private message and I’l share my contact information with you.

Cheers,
Riki

Thank you everyone for the information. He has an appointment on Wednesday with his dentist to get more detailed x-rays. I think his dentist is excited to learn more about it himself because he has never come across it before. I plan on reviewing the posts on here with Samji to see what he will require for a consultation to get prepared this week. I have trouble getting on here very often or reading as much as I would like. His symptoms have been pretty awful this week leaving him in bed early in the evenings while I take care of everything at home. Not a lot of time to get everything set up. I have a couple additional questions. He has always insisted that antibiotics have helped relieve his pain. I scared him into not taking them anymore because i know it is not good to take antibiotics for an extended period of time. He believes he has an infection in his neck. I was wondering if anyone has any experience with a symptom like that or if they have heard of someone taking antibiotics for it in the past? He will occasionally feel like his chest is very tight and the antibiotics provide some relief. He has been to the ER for it before but of course they never found anything wrong. Also, for the individuals that have had successful surgeries- Have you fully recovered from Eagle’s symptoms? Years later do you have any reoccurring symptoms? I am worried he is losing hope a little bit. He is ready to take the steps to fix it, but he is not very optimistic about feeling better.

Hi Luci,

Dr. Samji will require you to send a CT scan w/o contrast & the radiologist’s written report for him to review before he’ll concede to a phone consult. I would skip the dental x-rays & get the CT scan done if your husband hasn’t had one already. Why subject him to more radiation than needed.

As far as your antibiotics question goes, I have a niggling at the back of my brain that says I’ve read about someone feeling better from ES symptoms w/ antibiotic treatments, but I can’t remember who or what the symptoms were. A number of members have needed antibiotics for post op infx that have come up but that is something surgeons truly try to prevent. Hopefully someone w/ a better memory than I or who has experience on the antibiotic symptoms treatment will speak up.

Jules & I are two of the “older” members on the forum at this point. We both still have low grade symptoms from ES. I’ll let her speak to hers. As far as mine go, I wasn’t far from your husband’s condition. I had a multitude of symptoms including some very alarming ones which all subsided after surgery. It took almost a year for my nerves to fully recover after each surgery, & some didn’t completely. I ended up w/ First Bite Syndrome at the end of my first week after my first surgery. Most people who get this recover completely w/in a few months. I did not. That said, the frequency & intensity are much diminished from its onset. Additionally, I have learned that if I keep myself very hydrated, I basically have no problem w/ FBS. Regarding the residual symptoms I have, they do not impact my life in any significant way. I count them as small reminders as to how far I’ve come since the days of ES. I had it bilaterally & had two surgeries 9 months apart. Surgery literally gave me my life back.

Here is a link to discussions that came up when I searched “antibiotics for ES symptoms”. There are a lot of discussions so you probably won’t have time to read through them all. I’m not sure if any of them contain the information you’re looking for but if you have time to read some, you may find helpful information.

https://www.livingwitheagle.org/search?q=antibiotics%20for%20ES%20symptoms

I have done substantial research and interviewed five surgeons. It does not seem to be an extraordinary hard surgery to recover from. It takes away something that doesn’t belong. All the surgeons seem to say success rate is very high in well selected patients, ie those with symptoms consistent with eagle’s. I am putting off my surgery because of covid and my neck is weak. I’m doing “prehab”. I decided to go with Cognetti because I personally don’t want the styloid tAken to the base but prefer 1 cm left so not to risk the facial nerve. Samji goes to the base of the skull. That seems to be the big difference. All five surgeons said my rotation and flexion will improve.

I am planning likely August/September.

Good luck.

I was starting to feel pretty ill before surgery, (5 years ago) I had vascular ES & had some pretty scary symptoms. I had nerve pain too, which was worsening, with tingling & numbness on my face too. A few years on the vascular symptoms have gone (I noticed them a bit after flying, or under alot of stress, but very mild) I have a little nerve pain left, but not like before. I think scar tissue causes a little niggle, but my quality of life now is so far above what it was before, the surgery has improved my life so much! So I hope you can pass this on to your husband to give him hope! Best wishes :pray:

Jenniferobel,

I’m so glad you’ve made the most difficult decisions - first, to proceed w/ surgery & second, choosing a surgeon. That must feel like such a relief! Dr. Cognetti will do well for you. He is an excellent surgeon plus much closer to home which means less distance to travel. Please remember that he books his ES surgeries fairly far in advance since he only does them once a month so make sure you get on his schedule for Aug/Sept as soon as his office will book you.

Please keep us posted as to how you’re doing as time passes & how your “prehab” works for you also as your surgery date approaches, &, of course, post op. We are here to support you every step of the way.

:blush:

How nice! My arms and legs are stronger and my posterior neck is getting better. However, I of course, have trouble flexing my cranium and rotating right.

Good advice about booking out now. Given how you felt weak after surgery, I felt that I should try to get as strong as possible beforehand and have some great PTs that are respectful of eagles but strengthening me nonetheless.

They just started elective procedures at Jefferson June 5th which was my surgery date. Guess I did not feel like be one of the first cases…

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My husband is still waiting to get a consultation with Samji. We have been back and forth with insurance the last couple of weeks just to order a CT Scan without contrast. The radiologist called to explain that they did not see anything unusual or anything suggesting Eagles Syndrome, but also that they have not seen it before and they are not diagnosing anything. It has discouraged him a lot but after reading some posts on here about CT scans being “unremarkable,” I am still optimistic that Samji will speak with him about it. Communication is so poor between his PCP and the hospital it wouldn’t surprise me if they neglected to provide the report we need. Its hard to believe that we finally know what is going on and it is taking so long to do anything about it. All of the medical professionals keep trying to refer their own specialists, as though the general public is incapable of making their own healthcare decisions.

Hi Luci,

The diagnosis “process” can be so darn frustrating. Even if the radiology report doesn’t mention ES (& I’m shocked the radiologist has no knowledge of it!!!), Dr. Samji will read the scan himself & make a determination based on his experience. Tell your husband not to worry. Dr. S doesn’t give a lot of weight to CT scans. On the slim chance that Dr. S declines your husband’s case prior to reviewing the scan because there is no mention of ES in the radiology report, I would stand your ground & let him know that the radiologist in question was unfamiliar w/ ES & didn’t know what to look for. Just make sure the scan covers the area between the hyoid bone & skull base. I’ll PM you my 3D scan so you can see the area I’m talking about. If need be you can show it to the referring doctor so he’s clear about what you’re looking for & orders the correct type of CT scan.

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I really appreciate it. From the way the telephone call went with the radiologist he probably will need another scan. During his CT appointment he showed the nurse the email from Samji’s office of what needs to be in the report and I don’t even think that was sufficient to get it. I will update when we have more. Thanks again for your help

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The radiologist even saying that is a big red flag and I would not give any weight to her opinion. If she never has seen it, how will she know what it looks like? Get the disk (and report) yourself from radiology and send it to Dr. Samji (dont trust them to do it) and let him read it first before letting him deny you. Ive had that same experience with medical professionals trying to keep you “In-house” and send to their own people. Thank god we are capable of self-referral!
My PCP reluctantly ordered the CT scan and even wrote in visit summary he basically was humoring me and he thought my pain was from TMJ. Luckily the way the CT was ordered specifically stated for Eagles’ Syndrome. Low and behold I proved him wrong and the radiologist report did show eagles. I sent my disk to Dr. Samji and he reviewed in less than 2 weeks. Hang in there and keep pushing.

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Have you seen your PCP since? Did you say I told you so?! :joy:
I wished I could’ve seen the 1st consultant I saw again- he didn’t believe that the styloids could compress blood vessels, which is what I suspected, but agreed to refer me to someone more knowledgeable, the Ct with contrast I had then showed bilateral jugular compression!

We got the report that states he has 4.6cm styloids on both sides. Also sounds like maybe some disc degeneration? But it looks sufficient to send to Samji, just filling out the paperwork now to get in the mail. The person reading the radiology report had no idea what they were looking for is what it sounds like. They said there was nothing out of the ordinary, meaning they already knew how long his styloids were from his previous scans. His PCP has been supportive, actually seems really disappointed because he had someone with Eagles a very long time ago, he sent him to the ENT to rule out situations like that and is upset no one with an x-ray caught it I think. He has been trying to figure it out for years. Overall, grateful to be making some progress.

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4.6cms styloid processes, & nothing out of the ordinary! God job you know what you’re dealing with & what to do, hope you hear from Dr Samji’s office soon!

Luci,
Dr Samji requires CD of the CT be sent to him to do full review. He wont go on report alone so hopefully you have that too. I had radiologist and the DDS jaw specialist at oral health center say the same thing about the calcifications shown on the tomography 5 years ago when I asked them to review this past December. They see it but dont understand or have the experience that it is not normal to have this especially in light of alot of pain. Glad you are getting on the right path to resolving this. Best of luck on your journey.

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I have seen my PCP recently requesting a covid antibody test which he reluctantly ordered and tried to disuade me from getting. Having worked in infectious disease, I made it clear I understood the limitations of the testing and understood the results. I handed him the operative report from the ES surgery and he was pretty much silent about the whole thing. I tried to show him the incision and he wasnt interested in looking much at it. Given he was poo pooing my request for covid testing, he has not learned his lesson with me. Generally he has been a decent internist but I am looking for a new PCP for me and my daughter. I dont like having to argue for proper care, especially testing. I have to say I enjoyed shoving that report in his face.

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Good for you! Is it hard to get Covid testing done? Here they are very disorganised, but keep insisting they’re meeting targets!
Hope it’s negative…

This was the antibody test (blood) I insisted on. It primarily can detect if you have been exposed in the past (can see current too in some cases) although there is some questions about the overall reliability and accuracy of the tests. Since they don’t really know how long the antibodies are protective in our systems, they don’t want people to think they cant get it again and have a false sense of security. I was hoping for a glimmer of security. In my daughter and my case, it was negative. I cant imagine in UK they are anywhere near the chaos in US. It is a nightmare with absolutely no coordinated plan and no where near the amount of testing that should be done. Having worked in infectious disease field, what I am seeing right now is downright scary.

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It is really disorganised here- after all these months they still haven’t got PPE sorted properly for everyone who needs it! They’ve had to abandon track & trace, chop & change their minds about what we can & can’t do…rushed to ease lockdown just because a government advisor had broken the rules & gone out travelling while he had COVID & they wanted to distract everyone from that…sigh!
Sorry that you didn’t get any reassurance from the test results, take care :smiling_face_with_three_hearts:

Sounds like the united states but somehow you guys are managing better there.