Hello. I am new-ish to the group but am so grateful to be here. My bio dentist suspected that I may have Eagle Syndrome when he did a CBCT scan to address infected root canal and cavitation issues for which I had 2 abscessed root canal teeth removed , 3 cavitation sites surgically addressed and one small sinur repair in early June by a dentist in CT. I have had no symptom improvement yet though I was not symptomatic from my dental infections, thankfully… I guess I was magically hoping that the tinnitus and positional transient dizziness would somehow improve proving that I was asymptomatic from ES. Alas, this is not so. I live near Philadelphia so I reached out to Dr. Cognetti and have a November consult lined up. I have not really done much research about ES or IJV decompression surgery because I was preparing for my dental surgery and am scheduled to have one implant placed in mid January 2027.
I am wondering since Dr. Cognetti reviewed my CBCT scan and approved a consult with him, if that means he thinks I am, for certain, a surgical candidate. I read that this is the case and he then offers a surgical date shortly thereafter but not sure how accurate that is. I just watched Dr. Constantino’s You Tube presentation from the conference last Sept and it was highly informative (though I admit I did not view most of the slides/video) Q: For those of you who may have consulted with both, why did you choose one over the other and are their approaches/focus similar or vastly different? As with my dental surgery, choosing the right provider is half the battle and it was a difficult process. Thankfully, I believe I chose well for the jawbone stuff and am now just beginning to delve deeper in preparation for my first consult with Dr. Cognetti. Any insight would be greatly appreciated as well as any advice from those of you who have already had surgery as I begin my journey Living with Eagle. Thank you!
Hi! it does seem that sometimes the Vascular ES doctors don’t always agree on the imaging and what needs doing, some doctors have turned down members so sometimes they seek another opinion. We don’t know why this is, from what we can see on members’ scans there can be obvious compression but the doctors decline to do surgery… it’s always good to get a second opinion if you can, but it can sometimes muddy the waters! I think often members will choose one doctor over another because they feel more confident with one, but it’s often how easy it is to travel to that doctor, if they can stay somewhere close by, who’s waiting list is a bit shorter, the insurance issues etc, so it’s not a reflection on their competency!
We have had members who’ve had significant dental work done and this can really flare up symptoms of ES, so I would bear this in mind when you consider ES surgery and when you schedule your dental surgery…And possibly discuss this with Dr Cognetti when you speak to him & see what he suggests about timings?
Hopefully those who have had surgery with either doctor can give you input, & you can use the search function too as we have had discussions about the different doctors, they’re both very experienced!
@dbaiada - From past members’ posts, I’d say the difference between Dr. Cognetti’s & Dr. Costantino’s approaches are that Dr. Costantino always removes the body of the posterior digastric muscle, always cuts the greater auricular nerve (to make skull base styloid access easier & which is then repaired by Dr. Tobias prior to closing the incision), & always has Dr. Tobias remove the full transverse process (TP) from the C1 vertebra. He also checks the IJV for compressions other than that caused between styloid & C1.
As far as I know, Dr. Cognetti & Dr. Heller’s approach may not be quite so “formulaic” in that each patient’s case is treated as they deem necessary vs doing specific steps for every patient whether they may be necessary or not. Since you’ve watched Dr. Costantino’s YouTube video, you know he justifies his approach by the claim that, in his experience, it produces better overall & long-term outcomes. I don’t doubt that, however, we’ve had quite a number of members who’ve had very successful decompression surgeries w/o losing their posterior digastric muscle & the full TP of C1. That’s to say, I think the case by case approach is more ideal, but I’m not a doctor. I’m not sure whether the Drs. Cognetti/Heller team look beyond the styloid/C1 compression point or not. That would certainly be worth asking about when you meet with him. IJV compressions can also be caused by nerves & other blood vessels lying across C1, or scar tissue, fascia, muscle, /or lymph nodes crushing the vessel, often below C1. It’s important for any surgeon doing IJV decompression surgery to follow the IJV from skull base to collar bone to make sure all compression points are dealt with.
In case you haven’t read this post, it has good information about the surgery & questions to ask when consulting a doctor. You can add the things I’ve suggested above to the questions list, & of course, any other questions you have.
My daughter has had consultations with both of these doctors. They both confirm her c1 compression. Neither believe her styloids are involved. They both said they would do the surgery. However, Dr. Cognetti is more conservative in his approach and will focus solely on the c1 with the assistance of Dr. Heller. He is aware of the difference between his approach and that of Dr. Costantino. My daughter has decided after speaking with both of them and through careful consideration to go with Dr. Costantino. She does not have Eagle Syndrome but what they have called Internal Jugular Vein (IJV) outflow obstruction syndrome. There may be other compression sites in her jugular as well so because we are not sure what will be found during the surgery she knows Dr. Costantino will look more extensively and address anything he may find that may not be showing in the imaging. Both doctors have been extremely responsive and kind to us and I believe both to be excellent at what they do. I haven’t updated for awhile because we were waiting to speak with the doctor again and her surgery has been scheduled for October 19. She is on the cancellation list so it could be moved up at any time. I highly recommend you watch Dr. Costantino’s video in full - several times. It explains the condition and surgery in detail. I’m not sure if you’ve talked with Dr. Costantino yet but if not, make sure to watch it before you do so you can ask any questions. I hope you find the relief you are looking for.
Thank you so much for your reply. Very helpful. It sounds like you and your daughter thought through her decision very carefully and I wish her all the best on or before Oct. 19. I will watch Dr. Constantino’s video again. There’s lots of information to digest, I know. I probably should try to at least get a consult with him too. It’s nice to know both docs are kind, responsive, excellent practitioners. Thank you for commenting on my post. I still have lots to learn.
I appreciate your take on the differences between the docs and for the newbies guide. Right now, I’m a bit distracted with an ill family member but hope to dig in as soon as some time frees up. Your thinking re: case by case approach makes so much sense to me. One size probably doesn’t fit all so it sounds like I should consult with both to better understand what each would recommend. I know you’re so experienced with this stuff. My main symptom is hard to describe. It’s dizziness that happens upon changing positions when supine and when rising from the bed. It’s significant enough to feel the need to grab on to something. Though I have never passed out, I do worry about that. Also, I had my first (and hopefully only) episode of Transient Global Amnesia 2 summers ago which lasted 6+ hours. I am wondering if that’s related. Lastly, I have also experienced delayed light adaption in my left eye, obscuring vision when entering a dark room but every eye specialist says nothing’s wrong. Piecing things together is now what I endeavor to do as both symptoms are progressing and my biological dental issues have been resolved. Thank you for replying to my post!
I believe that global amnesia is a function of vascular dysfunction whether carotid or jugular. My dad had a problem with global amnesia & dizziness as you’re describing it plus some odd heart symptoms. I didn’t think about it until after he died, but I highly suspect he had a jugular outflow problem. His doctors’ focus was on his heart so he wore monitors for months, but nothing was found. Since I now know jugular outflow obstruction can also affect the vagus nerve adversely which could have caused the heart symptoms he had, I feel convinced that’s what he had going on. I only wish I’d known more about ES before he died in 2015 (I was diagnosed in 2014) as I would have pushed for the imaging he needed & perhaps his life could have been prolonged, or at least he could have been more comfy in his later years if that had been dealt with.
@Isaiah_40_31 I’m sorry to hear how your dad suffered. My dad is 86 with so many health problems, many of which I suspect are related to an undiagnosed venous outflow obstruction as well. He’s too ill to do anything about it at this point, unfortunately including Lewy body dementia. I find myself having the same wish that I knew about it earlier to have also been able to benefit him. Honestly, I think it’s amazing you were able to get diagnosed yourself back in 2015 given how much more we know about it today and how it remains so difficult to get diagnosed.
Thank you, @Chrickychricky. I’m very sorry to learn of your dad’s situation. My dad died at age 84 from a cerebral hemorrhage caused in part by the strong blood thinner he was taking. He was also in bad enough shape that he wouldn’t have likely survived what you & I have been through surgically, but it would still have been interesting to know if my diagnosis was correct.
I’m sorry that your Dad has LBD, that’s really tough @Chrickychricky …
I don’t know if you’ve read the article @TheDude posted, that Dr Agahayev has done about IJV compression & dementia, whether LBD is linked in with that as well:
Agreed about LBD, @Chrickychricky. My father-in-law died from Alzheimer’s. I took my mother-in-law to support groups for several years, & there was a woman in one of them whose husband had LBD in his 50s. Her stories about how it affected him were so terrible & sad. I’m very sorry your father is suffering from that in particular.
Indeed it is a challenging time for you. It sounds like between your hip healing & your involvement with parent care your life is quite full. I will pray the benefits & rewards of the time you give them will outweigh the gravity of caring for them.
Life has definitely not followed the script I have written, always throwing in a sudden plot twist!