@KimberlyNYC - You made a very valid argument. The info you asked for was very general & you should have been given a direct answer. That either says the people you asked have no idea or they’re hiding info which seems shady at best.
I also disagree w/ the assessment that someone who is diagnosed w/ ES doesn’t qualify for surgery. If a person has elongated styloids & is symptomatic, surgery is the only “cure” for symptoms or at least symptoms reduction.
I was really surprised that my question about how many styloidectomies surgeries he’d performed was met with surprise. I prefer to think it wasn’t shady, though referencing HIPAA as a reason (instead of saying “I don’t know how many”) was a bizarre turn.
Your point about not qualifying for surgery is extremely valid. It could be that this surgeon has specific criteria that need to be met or it could be something that his team member said to avoid answering my question about how many surgeries he’s performed. Hard to know.
It should be a straightforward process for would-be patients to ask clear questions to find out if a surgeon is experienced in ES surgery (which is very different than diagnosis/assessment) before making an appointment. In my case I believe I’ve found my surgeon, but since he’s not in network I thought I should be prepared to see a qualified in-network surgeon in case my insurance company requires an in-network second opinion. (I’ve already seen one in network head and neck surgeon who told me directly that he was absolutely not qualified to perform styloidectomies.)
I’d guess it may be more that the person on the other end of the phone doesn’t often get asked questions about how many surgeries he’s performed of a certain type (& they just made up a non-response, which they shouldn’t have. they should’ve just said that they don’t know about or answer those types of questions, but that the dr could do so). The dr should have an answer for that.
I’m supposed to be seeing Dr. Kutler this week and Dr. Costantino in 2 weeks, so we’ll see. I’ll give updates.
How wonderful that you’re able to meet with two possible surgeons so close together - congratulations!
I hope the appointments go well and bring you clarity and hope.
And I look forward to hearing about your experience when/if you feel like sharing.
I’m seeing Costantino next week—bilateral Eagles with IJV compression on the right—and would love to hear about your experience! I need to decide if I’ll do surgery with him or wait for Cognetti in Philly, who can’t see me until August. Thanks!
@DoloZ - Did you end up meeting with any NYC surgeons and/or make decisions regarding surgery? I’d love to hear about your experiences/thoughts if you’re up for sharing!
Hi BriCSP.
Unfortunately I don’t have much to share as I’ve not yet had surgery: Dr. Costantino is out of network with my insurance, as is the neurosurgeon. They’re going to try and get an out of network exception to cover some/all of the surgical fees. I’m in a holding pattern until the documentation is submitted to my insurance and insurance makes their determination.
I didn’t realize that Dr. Cognetti managed vascular Eagle Syndrome.
Dr. Costantino is experienced, compassionate, has a sense of humor (he made a joke about the clinical term for the size of my styloids being “ginormous”), and surrounds himself with an incredible team. All of which is why I decided to have my surgeries with him (bilateral ES and bilateral IJV compression between styloid and C1).
Other contributing factors for my decision, which may or may not apply to you:
In summary: my experience and consists with Dr. Costantino and his team have been positive.
Would love to hear about your experience once you’ve met with him.
I’ve recently stumbled across this forum after looking for others suffering from IJV compression on Reddit for over a year. I could barely find anyone there with similar symptoms that had undergone a styloidectomy and post about their results. But this forum has so many detailed stories pre and post op it gives me a lot of hope. I will post my full diagnosis with images when I get more time, but I saw this ongoing thread and thought I could contribute.
I have bilateral IJV compression that is most prevalent on my left side. My right side is hypoplastic as the right transverse sinus never developed. So really I only have my left IJV that is semi-functional to begin with. I was confirmed to have IJV stenosis by Dr. Patsalides via venogram/angiogram and referred to Dr. Larry Lo for IJV decompression surgery (styloidectomy and C1 shaving). Dr. Lo, as previously mentioned, is the neurosurgeon that works in conjunction Dr. Constantino. I live in Florida and will be flying out to NY for my surgery May 16.
I just had my pre surgical meeting with Dr. Constantino yesterday. Since my surgery was set up through Dr. Lo’s office, this was the first time talking to Dr. Constantino. He seemed very confident that this surgery is very standard for him and said there’s very little in the way of complications that he has dealt with. He was of course obligated to say there are dangers with this surgery and a possibility that it will not resolve my set of issues.
Dr. Constantino will be preforming the incision into the neck, muscle detachment and styloidectomy. Dr. Lo will be preforming the shaving of C1. Both are very open about the questions I had. It is obvious they have done these surgeries many times.
A couple interesting things I noted from my talks with both surgeons that I have seen brought up in previous conversations.
Dr. Lo mentioned that IJV decompression cases sometimes fail without the C1 shaving and just doing the styloidectomy. I suppose that is due to the amount that the C1 is pushing into the IJV versus the styloid. In my case it is very obvious that C1 is playing a major part in the stenosis and Dr. Constantino also briefly mentioned this.
Dr. Constantino does nerve monitoring. So hopefully there is less residual nerve damage to overcome after the surgery.
One of the testing procedures Dr. Patsalides did was balloon occlusion. It blocks the area where the IJV and transverse sinus meet. He is testing for collateral vein formations that can help offset IJV stenosis by allow another channel for the blood to flow. In my case I was not able to compensate when the balloon was inflated and the pressures in my head skyrocketed.
I’m coming from FL to get this surgery done in NY, mainly because I started this journey with Dr. Patsalides, but I am very comfortable with Dr. Lo and Dr. Constantino being my surgeons. I should also mention I have worked for a maxillofacial surgeon myself for over 15 years and have a lot of experience with surgeries in the facial region.
Congratulations on having done all the hard work to get your surgery scheduled and with a great team!
Will you be having your surgery at Lenox Hill Hospital / Northwell in NYC?
Do you know if they plan on keeping you in the hospital for 24-48 hours post-op?
Thank you for the great information @GCD. I second @KimberlyNYC 's kudos for doing your homework & finding the best surgeons to help you recover. Your case of IJV compression is a bit different since your body is missing some important vascular elements, but it’s also a testimony to how well the human body can function even when it hasn’t formed perfectly.
I’m really glad to know that Dr. Lo does the C-1 shave. This information will be helpful for our members who need that. The only other doctor we know of who does this in the US is in AZ. I’m sure there are others, we just don’t know who they are.
Thank you @KimberlyNYC and @Isaiah_40_31. Like so many of the patients here, I have been suffering for over a decade in search of answers.
I will be doing the surgery at North Shore University Hospital, which is part of Northwell Hospitals.
I am not sure on the hospital stay post op. I was told that I will be up and mobile within 24 hours, but Dr. Constantino told me that the drainage tubes would be removed within 24-48 hours. So I’m not sure if they keep you in the hospital until they are removed or if I can go home with them. I guess it all depends on the difficulty of the surgery and my recovery afterwards.
My understanding from Dr. Costantino was that they don’t release you from the hospital until (1) the drainage tubes are removed and (2) you’re able to swallow.
Well, good information to know. I just assumed I would be released to go back to my hotel after 24 hours. I guess we will know in a month from now.
Hopefully it will be 24 hours or less for you!
Thank you so much for this detailed response! It has made me feel much better about my prospects.
I’m sorry that they’re out of network with your insurance, and I hope the exception comes through. I have a chronic illness that required two surgeries, one out-of-network, so I know the insurance dance well.
I didn’t realize different surgeons handled different types of Eagle, but I’m glad to hear from you and @GCD that apparently Dr. Costantino is experienced with the one I have! I was definitely going to probe him about it, but I’m feeling much more optimistic going in now.
I had an appointment this Wednesday, but it just got moved to the following week (they were extremely apologetic). I’m eager to get some momentum because I’m losing my top-tier employer-sponsored health insurance in August, when I open my own business (I’m also not going to have sick leave, and I’m going to be quite busy!). It sounds like others have been able to schedule their surgeries fairly quickly (and only waiting a couple weeks for the consult is a good start), so that also is giving me a lot of hope/relief as well.
Thanks so much for your time and help—it is enormously appreciated!
I would love your PT recommendation, if you don’t mind!
Andrew McGovern:
609-731-8727
Reading now… and getting my answers (don’t want to burden you with those) ))