# Ik it says use best judgment on surgeons a rare disease org gave me a surgeon the surgeon is in a medical journal **URL:** \ **Category:** General\ **Created:** [August 8, 2024, 12:20pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779 "2024-08-08T12:20:30Z")\ **Posts on this page:** 15\ **Page:** 1
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 8, 2024, 12:20pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/1 "2024-08-08T12:20:30Z")
Good Morning Eaglers (I’m in EST), Does anyone have any thoughts what my headline says. Ik a lot of Eaglers go with similar surgeons. I was wondering what I’d be doing if I didn’t go with a similar surgeon. That being said a surgeon of John’s Hopkins was listed on surgeon’s provided to me by a rare disease organization the said surgeon has published in a medical journal on Eagle. ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [August 8, 2024, 3:11pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/2 "2024-08-08T15:11:40Z")
Our doctors list is comprised of doctors who members have seen and can either diagnose ES and/or perform the surgery…but it’s only doctors we’ve heard of, so by no means a comprehensive list, I’m sure there are other doctors out there we don’t know about! (Some members are also on a FB Eagles group & have heard of other doctors through that) We do have a list of questions we suggest members ask doctors if they’re seeing someone & aren’t too sure about how successful their surgical technique might be, here’s a link: [ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle](https://forum.livingwitheagle.org/t/es-information-treatment-surgery/1385) ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [August 8, 2024, 6:14pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/3 "2024-08-08T18:14:20Z")
Interesting that you were given an ES list w/ a doctor at Johns Hopkins. In the past, our members who sought help from JH were turned away as there was no one knowledgeable about ES there. If there is a competent ES doctor there now, I say GO FOR IT! We’d love to have another name to add to our Doctors List. Please let us know if you decide to see the doctor you’re aware of & what you think of him after your appt. ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 9, 2024, 11:10am UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/4 "2024-08-09T11:10:00Z")
Thank you Jules! For staying on living with Eagle and always quickly responding to me and always all your hard work providing me links. I appreciate you! I’m in receipt of the link! ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 9, 2024, 11:17am UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/5 "2024-08-09T11:17:19Z")
Good Morning Jules (As I said I’m EST)! My apologies Jules that I forgot to greet you. Good Morning Isaiah, (As I said I’m EST) Thank you Isaiah for always responding quickly and for staying on living with Eagle. Thank you Isaiah for your encouragement as well as the back story. Your help is likely greater help than you realize. Kaiser had me feeling like they were trying to Henrietta Lacks me (Thank you all for the advice on this bit way back when as well) it is promising Hopkin’s in the past has turned patients away rather than as I’ve heard take some Eaglers’ money and open them up only for some Eagler’s to have to spend additional money to fix inadequate surgeons and be opened up again. ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [August 9, 2024, 6:22pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/6 "2024-08-09T18:22:35Z")
I hope you’re able to get the help you need from the doctor you’ve been referred to, @Itsanewdawn. It’s been quite a wait for you to find the best doctor for you. 💝 ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 9, 2024, 7:21pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/7 "2024-08-09T19:21:38Z")
Thank you Isaiah! I appreciate your recognition of my wait! ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 24, 2024, 11:38pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/8 "2024-08-24T23:38:13Z")
Good Evening Jules, My mom found another article I’m seeing whether there are any thoughts if you all are aware this article exists > **[Minimally Invasive Cervical Styloidectomy in Stylohyoid Syndrome (Eagle...](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10649648/)** > > (1) Background: Stylohyoid syndrome, known as classical Eagle Syndrome (cES), is characterized by calcification of the stylohyoid chain with numerous nonspecific symptoms, mainly pain. This study introduces minimally invasive cervical styloidectomy... ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [August 25, 2024, 12:06am UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/9 "2024-08-25T00:06:08Z")
I believe this article has been mentioned on the forum previously, but when I searched for it I couldn’t find it in our Research Papers list or in the discussions. That’s to say, I’m not great at searching for things here & sometimes miss what I’m looking for. 🤪 What’s being described in the article is typically the way transcervical ES surgery is done when there are no complicating factors. Unfortunately, the diagnostic scans don’t show everything that a surgeon may find w/ his/her eyes once the patient’s neck is open so judgment calls need to be made spontaneously during surgery regarding how invasive a surgery must be to deal with what the doctor sees. I would say my initial two surgeries fell under the minimally invasive category. My next one is for IJV decompression which I suspect may be more invasive. ---
**Author:** ![Mod\_support](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/mod_support/32/1118_2.png) [@Mod\_support](https://forum.livingwitheagle.org/u/Mod_support)\ **Post date:** [August 25, 2024, 9:30am UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/10 "2024-08-25T09:30:20Z")
Hey @Isaiah_40_31 I couldn’t find a previous link to the PubMed article. However, I did find a post regarding the “minimally invasive cervical styloidectomy” (MICS) procedure, from May this year. Here’s a link to that post [Dr Bargiel and his technique (MICS) - surgery in under 10 minutes! - General - Living with Eagle](https://forum.livingwitheagle.org/t/dr-bargiel-and-his-technique-mics-surgery-in-under-10-minutes/16155) There is a YouTube video of the procedure in that post. Hope it helps Merl from the Modsupport Team ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 25, 2024, 11:05am UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/11 "2024-08-25T11:05:42Z")
Good Morning Wendy, I appreciate your quick response and your breaking down the technique described in the NIH article. ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 25, 2024, 11:06am UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/12 "2024-08-25T11:06:56Z")
Thank you, Merl! ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [August 25, 2024, 3:49pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/13 "2024-08-25T15:49:04Z")
I’ve replied via PM to you, but in case anyone else reading this discussion is interested, here’s a few of my thoughts: The article was interesting in that normally we suggest the external approach for styloid removal as it gives better visibility for the surgeon re nerves & blood vessels, but the study states that they did thorough testing beforehand with CTs etc to work out all the positions, so it sounds like they did their homework if you like! Although we have had a few members report that their surgeons found things were a bit different to the CT once they were inside… I think if you don’t have vascular ES it might be a good bet, it sounds as if it would be a much easier recovery than some of the surgeries we see members with, very big incisions & presumably muscles cut through. From what they said in the article, they didn’t feel the surgery was appropriate for everybody after studying their imaging, so it sounds as if it’s a cautious approach. With Vascular ES, especially the IJV compression, 1 cm left of the styloid might not be enough to completely clear the compression, but again, that should be obvious from imaging. And a 97% success rate is brilliant! It depends on the patient whose surgery didn’t work too; the study says that their follow up was 6 months later, whereas on here we have seen members who have still had improvements a year after surgery. ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [August 25, 2024, 10:30pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/14 "2024-08-25T22:30:47Z")
Thank you, Merl. I knew I’d seen it somewhere, it was a YouTube link vs a link to a research article! I appreciate your help!! Thank you, @Jules, for your more thorough & accurate review of the research article. ---
**Author:** ![Itsanewdawn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/itsanewdawn/32/7820_2.png) [@Itsanewdawn](https://forum.livingwitheagle.org/u/Itsanewdawn)\ **Post date:** [August 26, 2024, 1:55pm UTC](https://forum.livingwitheagle.org/t/ik-it-says-use-best-judgment-on-surgeons-a-rare-disease-org-gave-me-a-surgeon-the-surgeon-is-in-a-medical-journal/16779/15 "2024-08-26T13:55:44Z")
My bad for my confusion Jules. Thank you, in spite of my confusion for your thorough breakdown. Dr. Jakub treated his patients in Poland it’s just in an NIH publication