I was recently diagnosed by Dr Bolognese; he recommended bilateral styloidectomies followed–if necessary–by bilateral C1 resection. I feel like this is likely the correct direction for me, but I have just this one opinion so far. I have been through a number of months of testing with Bolognese, and it has been valuable, but I am not sure I would select him to do a styoidectomy. I see that this forum has chosen not to include him in your list of doctors and I have noticed references to him that imply he is not a great choice for Eagle Syndrome surgery. I think this is what my gut is telling me, but I am curious if there are any more recent experiences or thoughts on his prowess in this surgical domain. He is fairly convenient for me (I live near Philadelphia and…Dr Cognetti) and I am set up as a patient, know their system, etc. But something is telling me to look further afield. Thanks in advance for anything you can share.
@jyoti - Dr. Bolognese is not on our Doctors List because he has a “shady” medical history so the admin of this forum have asked us not to promote him medically. I believe he has redeemed himself from past mistakes, but the decision for our forum still stands which is justifiable.
In your situation, we would recommend seeing either Dr. Cognetti or Dr. Costantino who is in White Plains, NY. Dr. Cognetti is now booking initial consults in Feb. next year because he prioritizes his cancer surgeries over ES surgeries (we keep hoping he’ll change his policy). Dr. Costantino though quite busy isn’t booked out as far.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves
David M Cognetti MD | Jefferson Health Does do online or phone consults.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
Thanks so much @Isaiah_40_31 . I have definitely been considering Drs Cognetti and Constantino, along with Dr Nakaji. My reading here has started to incline me toward the latter. I am also working with Dr Hui, who collaborates with Dr Hepworth a fair amount. I appreciate the background on Bolognese and why he is not listed here. In addition to his history, I think I have had some reservations due to his larger focus on fusion and Chiari decompression. These other doctors do other surgeries, but it seems from what I can tell that they really are passionate about Eagle Syndrome treatment.
I believe your perception about Cognetti, Costantino, Nakaji & Hepworth is accurate. 
I’m curious about how he’s redeemed himself. I’m on the fence about seeing him and have been on his wait list for a year. He completed my opinion letter but I haven’t received it since I need to pay $1000 first. I’ve been progressing with another neurosurgeon who works closely with Costantino so I don’t know if it’s worth yet more money.
Personally, I’d stick with Dr Costantino for now…
Yeah…and Jenkins is next door to his office for CCI fusions. I’m wary about Dr Bolognese but know people have loved him for CCI and EDS.
I agree w/ @Jules & would stick w/ the neurosurgeon who works closely w/ Costantino, too!
Because we don’t have members who see him or discuss him, I don’t know much about what he does.
As far as his redemption, he lost his medical license at some point in the past, but it has been restored to him, thus I surmise he must have done something good to regain the trust of the medical board who reissued his license. His back story used to be online via Google. I’m not sure if it’s still there or not though.
I’ve seen Dr Jenkins and while he is super nice and very thorough he is one of the newer neurosurgeons doing fusions for cci . His experience with eds patient is growing . However for such a high risk surgery such as a c1/2 fusion, I would personally only go with someone who has been doing them for years like Dr bolognese or Henderson even Patel. They have the most world renowned experience with cci and have done so many that they really vet patients and only would recommend if absolutely necessary. They have been around long enough to see the good bad and ugly. Dr Jenkins I think has been doing them now for only 5 years or so. Though I am glad more neurosurgeons are acknowledging cci. I enjoyed my experience with him but he is surgery heavy and tends to suggest surgery pretty easily and several surgerys in my case
Fortunately I had a successful 3rd cervical fusion for CCI with Jenkins (involved extension and revision of a previous fusion C0-6). Multiple opinions are necessary with any neurosurgery and I was able to see Bolognese too. I’m glad I did that to be thorough. I’m 3 months post op and have been given a new shot at life. I underestimated the severity of my neuro symptoms preop and could not wait much longer. I trust Jenkins for my case. As with any surgery you have to trust your surgeon. Jugular vein compression ended up being a minor cause of symptoms compared to my instability. (PS - heard Patel is no longer practicing due to health reasons).
RE: Patel–I recently read that he is back in the office a couple days a week and has recovered almost completely from his stroke, working with his PA. That he hopes to be back in a more fulsome capacity in the summer. But….I don’t know if he will be operating.
@mountangurl I’m glad that your surgery was successful and that you’re getting your life back! How long ago was your ES surgery?
I am so so glad your fusion went well! This make me so happy ! And hopeful in case I need Jenkins to operate one day. I had to get many opinions too! Jenkins wanted to do c0-2 fusion and also a multilevel laminoplasty. . I would have done it in a heartbeat if I had other surgeons agreeing, like you said it’s so important to get other opinions!! Did you ever get styloidectomy or did all of that subside after your fusion?
I was so scared to jump into those 2 surgeries. Constantino introduced me to Jenkins on a 3 way telamed with them both. If Constantino took the time to do a telamed med with Jenkins and me as well I guess they really believe their series of surgeries is what is right for me. I will say I was so impressed that 2 surgeons wanted to do a telamed with me at the same time. In this crazy medical world, I feel like that is unheard of !!
that was over a year ago and since I have been collecting other opinions but still so unsure if most of my symptoms are coming from eagles or cci. Cci is probably causing me most of my issues. Though I think it’s impossible to know for sure until I make a decision and do something. I am disabled and mostly housebound so I need to make a decision. Always scared I’ll make the wrong one and of course I want to make the right one. Other than the classic cci symptoms I have horrendous pain in my face and mouth burning and it’s just so unbearable. I see Dr Kaufman who is a complex disease doc and highly sought after in the eds community. He is urging me for styloidectomy ccf. Hard to know where the burning nerve pain in mouth is coming from , styloid or cci cranial nerves being compressed at c1/2! I wish there was a way to see nerves on imaging in the c1/2 area. Sorry for the long reply lol!
Hello Jules- I only had my craniocervical fusion at this point so I’m fully fused now CO-6 because of previous fusions (and in the front c4-6). Costantino and Jenkins decided my instability symptoms and imaging was worse than JVC. I’m about three months postop with significant improvement. Since the recovery is 1-2 years more could improve or stay the same so in the future it’s an option to address the jugular vein more. Stabilizing C1 has helped! I had different jugular vein approaches and thoughts from Bolognese and Hepworth so I’m glad I went with Jenkins. I can live with pulsatile tinnitus for longer but not what brainstem compression was doing to me..
@giannaM It’s such a hard process to know what to do first as these are life changing surgeries for better or for worse. I went 5-6 years in decline with upper cervical instability after my ACDF 4-6 and posterior C3-6 and was rapid in the last year. I didn’t even know Jugular vein compression was a possibility until I saw Jenkins. With EDS each surgery is a Pandora’s box. We gain and lose from them.Bolognese says when you are ready for that fusion you’re practically begging for it. I knew I would need one eventually for those 5 years and the last 2 I knew it was time and by the latter half of 2025 I really understood what it meant to be ready for it. I lost so much in my life and abilities while also dealing with the comorbidities of EDS and other fusions and CSF leaks. As you know it’s never just one thing.
Since you noted cranial nerve involvement I have had a great improvement with my numbness on my face and issues with slurring my words. While my Trigeminal neuralgia isn’t fully gone (sinus disease impacts that too) it’s all much better. It is so hard to know what comes from where with overlapping symptoms.
You’re doing the right thing seeking multiple opinions and exploring every other treatment before a craniocervical or upper cervical fusion. I hope that you find a way forward and the best surgery first. Before my first cervical fusion my surgeon told me start small. It’s like making a soup, add the spices slowly since you can’t take them out once you add them (I’m horrible at cooking though lol). But you reach a point it has to be done.
Thank you @mountangurl for sharing your experience w/ the cervical fusions you’ve had. I’m so glad you’re doing significantly better so soon post op. Just imagine how great you’ll be doing in 1-2 years when your body/muscles have more fully adjusted to the fusions!
@GiannaM - You do have some tough decisions ahead. I hope the information from @mountangurl & @jyoti is helpful as you consider what your next steps should be & who to take them with.
Thank you for all that info & your input, good that you’ve avoided the ES surgery for now…it’s encouraging that symptoms are improving, but I’m sorry that you’ve been through so much before surgery 
@GiannaM , I don’t know if a FIESTA MRI / Cis MRI would show the nerves at this level to help with your decision? We’ve had some discussions about this MRI technique as they are more detailed & have been used to see compressions in the skull base, but don’t seem to be very easy to get anywhere, might be worth looking in to whether any clinics do this in your area?
I love that analogy about the soup lol! Thanks for sharing your story. I have been sitting on these decisions for over a year, but have declined so much. I have an unbearable quality of life!! I am almost at the point where I am begging for fusion, though it makes it hard to 100% trust in one surgery when multiple issues are going on. my nTOS is really ramping up lately. But I’m not sure if its due to poor posture due to my cci or what!
I will probably do eagles surgery to start with and then see how things are and reassess fusion afterwards. Its hard to pick a surgeon thats for sure. Last year I just stopped seeing Jenkins abruptly, mainly because I was getting second and third opinions to his surgical plan for me. when 3 surgeons do not agree, its hard to make a decision. I just want to do whatever will help me most! I’ll do whatever ! Just hard to know who’s plan to go with.
In addition to fusion, Jenkins is the only one recommending multilevel cervical laminoplasty. I wish I had another yes to this so it would help me say yes to the laminoplasty.
I may go do ICP testing with Bolognese in April and see what he says/ his opinion on my possible styloidectomies/ IJV decompression and go from there. Then I would have 2 surgical opinions on eagles so hopefully I can make a decision then. Sorry for the rant again. Its helpful to talk to others!
@GiannaM - Even with your health declining, it’s good that you’re taking your time to understand your situation & decide whose procedure seems the most reasonable to help your health situation improve. It can be a difficult decision especially when you don’t get answers that are even remotely related to help guide you.
I think starting w/ ES surgery is a good step since at least some of your symptoms are likely related to that. Once you’re well into recovery, it may be more clear what needs your attention next. It’s been said on here that dealing with complex health issues is like peeling the layers off an onion. Layer by layer the problems are revealed & can be dealt with.