Hi everyone! First time posting … after years (decades) of pain I finally have a diagnosis of ES which is an incredible relief. Now I face what feels like a huge decision: choosing the right surgeon. I have bilateral elongated styloids (left styloid extends into the parapharyngeal space), calcified stylohyoid ligaments and bilateral IJV compression.
Does anyone have recommendations for surgeons in New York? I’d love to stay local if I can, but my priority is excellent, experienced surgical care so I’ll travel if I have to but traveling for surgery feels quite overwhelming right now.
I have a short list of names, including Dr. Peter Costantino, Dr. Andrew Tassler and several surgeons who do the surgery but haven’t done many. I had a positive first consult with Dr. Costantino, though he is not in network with my insurance which I suspect is true for most ES surgeons.
Has anyone had surgery with a NYC based surgeon?
I’m also looking for local physical therapists/NUCCA chiropractors and practitioners of other possibly supportive manual treatment modalities for before and after surgery.
Thank you - I appreciate this forum, its resources and all of you so much!
i live in NYC and have seen a doc covered by many insurance plans: Dr. Kutler at Weill Cornell Medicine. He’s very reputable in head and neck surgery and has done SOME (not sure how many) ES surgeries. I also highly recommend a certain PT, but he is cash only. Happy to chat more with you!
You’ve made my day (up early with a headache), thank you. Would love to chat more and hear about the PT/surgery experience. And you’ve saved me an email to Dr.Tassler’s surgery coordinator: if he referred you out I can skip the step of seeing him. I’m at the “choose a surgeon” point and I’m so grateful you saw my post and took the time to reply!
@PamelaInNYC & @KimberlyNYC - You two can start a private conversation by one of you clicking on the other’s screen name or avatar as it appears above a post. That will take you to a page where you can start that conversation. I’m so glad you’re near each other & that’s been helpful! This is the express purpose of this forum - being able to support each other in significant ways. Glad you both found your way here.
Wait- does Dr Tassler not perform styloidectomies? I’m scheduled to travel to see him for an in-person appt, but no point if he doesn’t consult regarding surgery. @KimberlyNYC too
I recommend calling his office and making it clear that you’re specifically consulting for styloidectomies/ES and that you’d like a member of his clinical team (not the folks who schedule appts) to check with Dr. Tassler and confirm he does that surgery (and how many has he done). I’m in a particularly rough spell and not able to check my notes but @PamelaInNYC said he referred her to a different surgeon.
I’ve had two consults with Dr. Peter Costantino (he sees patients in NYC on Wednesdays) and have been so impressed with him and his entire team. He diagnosed my bilateral IJV compression (sent me for an MRV) and has referred me to a neurosurgeon as I need C1 shaved; they would operate together.
I believe I’ve found the best surgeon for me. I’m also grateful that he has such an amazing team - clinical and scheduling/billing - all compassionate, responsive, cohesive.
Dr. C is not in network with my insurance but he might be with yours.
Dear Kimberly, It sounds very serious that you need C1 shaved. I am so happy to hear that you found a TEAM that will partner in the exact surgery you need.
I’m sorry that you are in a rough spell. Please let me know how I might help you!!! You have my number too…
Hello! Dr. Tassler’a assistant told me that Dr. Tassler recommended that I call Dr. Kutler Instead. Maybe Dr. Tassler had no openings at that time (several months ago) or maybe he didn’t want to see me for a calcified ligament. I don’t know… Sincerely, Pamela
Thanks to both you and @KimberlyNYC . Do you all think it’s enough to have consultations with Drs Chhetri (UCLA) and Annino (Boston)? Due to other health issues, I’ll only have surgery done with a dr who practices at a regular, big hospital. I have in person appts with both of those surgeons and would consider either of them for surgery (and I have other drs and medical records with both of their hospitals already).
Update: I called Dr. Tassler’s office and they confirmed that he won’t perform styloidectomies, but that he refers ppl to Dr. David Kutler. Before I read here, Dr. Tassler’s office let me make an appt for evaluation for a styloidectomy for Eagle’s syndrome and told me it had to be in person. They were going to have me make the trip there without telling me that Dr. Tassler won’t do this surgery or evaluate ppl for it or Eagle’s syndrome! Thank goodness I checked here when I did.
Dr. Tassler’s scheduler rescheduled to switch my appt with him to one with Dr. Kutler.
Dear @ DoloZ,
I totally agree about getting surgery at a major, reputable medical center. Maybe before traveling here find out how many styloidectomies Dr. Kutler performs each year? It’s an excellent question that @KimberlyNYC asked her prospective surgeons (if I remember correctly).
I will tell you that when I looked this past summer, Dr. Kutler has many EXCELLENT reviews for successful complex head-neck surgeries and for being kind and caring throughout the process.
It looks like Dr. Kutler has performed 20-30 styloidectomies based in others’ comments in this forum. I’ll check with his office, but wasn’t able to reach them today. One of the experiences of a potential patient of his wasn’t so great, so maybe I might be fine with the others I’m consulting with- we’ll see. This is all so much.
No, I never saw negative comments after surgery about surgeries he’d performed.
I need to look harder. I’m so glad you saw good experiences of ppl who had surgery with him- thanks for sharing that. I saw ppl who met with him and scheduled surgery, but didn’t see anybody saying anything post-surgery. I’d really appreciate his input if others have been happy with their surgeries with him.
The reviews I read of Dr. Kutler were about his general surgical prowess and bedside manner. I actually, though, didn’t see any reviews at all about Eagle Syndrome-related surgery.
Does Dr. Costantino do surgeries at a big hospital and/or operate in a large medical system? It looks like he’s mostly in a smaller practice in white plains? And he might only be a consult for me (if I can get an appt), if he doesn’t take insurance (or my insurance).
Seeing as we have more discussions of styloidectomy experience with him, Costantino might be a better second/third opinion for me than Kutler.
He operates out of Lenox Hill Hospital (part of Northwell Health), a major NYC hospital, definitely part of a large medical system. [I imagine he also operates out of a hospital closer to his White Plains practice but I don’t know. BSSNY (the practice he’s affiliated with) was founded in the 1950s and I believe it has an excellent reputation.
He’s par with many insurance plans, just not mine. His office is trying to get a special coverage exception for me given that there are no in-network surgeons who have close to his experience doing styloidectomies. I don’t want to have a complex surgery with a surgeon who’s only done a handful of styloidectomies, no matter how skilled/experienced the surgeon might be with other surgeries. There are a lot of important nerves and vascular structures in a small anatomical space …
I’ve been impressed with him and his team, and wouldn’t hesitate to recommend him for a consult. I hope you have a positive experience with him if you decide on a consult.
If you have an appointment with Dr. Kutler and ask him how many styloidectomies he has done, would you please share here?
I called his office and spoke briefly with his surgical coordinator who said he sees about one Eagle Syndrome patient every 2 months and that (a) not every patient wants to proceed with surgery and (b) not every patient is a candidate for surgery.
I asked approximately how many styloidectomies Dr. Kutler has done and was told “many,” but when I asked them to quantify “many” (10? 20? 30?), they said they couldn’t disclose the number because it would be a HIPAA violation. I explained that I wasn’t asking for specific patient information and that HIPAA didn’t apply (I was diplomatic but clear).
I think it’s reasonable to ask about a surgeon’s experience with this procedure but maybe that’s just me …
