Hi everyone. I was just diagnosed a few weeks ago. My ENT was not terribly helpful, which I’m actually happy for now. I have calicified stylohyoid ligaments on both sides and I have EDS as well. I was just wondering if anyone had surgery with an experienced Eagle surgeon (like Dr. Cognetti or Dr. Samji) and had regrets? Either something went wrong or it caused other problems? Beyond general surgical risks, I am trying to decide if there’s any downside to just yanking these puppies out rather than waiting until they’re completely excruciating and causing more damage. I would love to have the sore throat gone and would be very interested to see if my migraines improved. I know that no doctor can say positively that the daily migraines would improve but if there’s even a chance I feel like it would be worth it. Thanks for any help!

We have to be careful for legal reasons to not post any negative comments about particular doctors, I’m afraid, jessfl.
But in general, there have been a couple of members who have had problems with nerve damage to the nerve going to the shoulder in particular, and they’ve had to have physio to try to improve that. They’ve not been on for a while, so I don’t know if that’s improved with time. And one member who had vascular ES and had already had a stroke had another one during surgery. So there are risks, but these are rare, and not necessarily happened with very experienced surgeons.
Some people have had numbness with the facial nerve, but that’s improved with time. A good surgeon should monitor the nerves during surgery.
Overall generally people are glad to have the surgery because the pain they’re in outweighs the risks of surgery. As you mention, sometimes leaving them in until they’re excruciating can cause more damage… it’s a very personal decision, and a lot comes down to finding a surgeon you feel confident with.

Thanks so much! I’m not looking for any specific reviews of drs really. It was more of whether anyone had any issues that caused them to regret surgery even using a very experienced dr, such as those. It seems like just from reading posts that some numbness, first bite syndrome, maybe some tooth shifting, and some nerve pain have been the issues I’ve been seeing. And most of those resolved over time. I was just trying to gauge whether those issues were enough for me to avoid surgery altogether.

Dr Cognetti operated on me last August. Great surgeon. No regrets , I have my life back pain free

I had 2 surgeries done by Dr. Samji (2014 & 2015), so I’m a ways out. I have first bite syndrome as the result of my first surgery & some residual nerve pain near my jaw joint. I have a little numbness along my jaw line from my second surgery. Neither of these compare to the inconvenience, pain & life altering issues I had with elongated styloids and partially calicified ligaments. My physical activities were limited by my ES pain & other symptoms. I also feel like I have my life back since having the ES surgeries. I am 100% PRO surgery.

Like you, I have calcified stylohyoid ligaments on both sides. After going to 2 expert surgeons and even communicating with others who have had successful surgical outcomes with Dr. Cognetti, I decided to have the left stylohyoid surgically excised by Dr. Cognetti in June 2015 at Jefferson in Philadelphia. Unfortunately, it did not relieve my symptoms, which have actually intensified. I went back to the surgeon several times after the surgery, but was unable to get an explanation, other than the caveat that there are no guarantees with procedures such as this. I am very disappointed and even frustrated. I therefore feel that I cannot offer any positive recommendations to anyone who is faced with the agonizing decision on how to seek relief from this horrible ailment.

I had both sides done in the last 3 months. While I am still recovering from number 2, overall once of the great things I can share is that my 1-sided severe migraine headaches have stopped since my first surgery.

Thanks so much everyone! Bear_Al I’m sorry to hear there’s no improvement. Hopefully you’re no worse at least. It sounds like it’s worth at least speaking to experienced surgeons. I’ll see Dr. Cognetti at the end of the month and I think I’ll see about getting a teleconsult from Dr. Samji. Somewhere I saw a post about how to go about that so I’ll hunt it down. Thanks again to everyone.

jessfl - you can contact Dr. Samji via his med assistant Kim - ■■■■■■■■■■■■■■■■■■■■■■. He does charge for phone consults but gives you a decent amount of telephone time.

Thank you so very much! I’ll send her an email. I have an appointment with Dr. Cognetti in a few weeks so it will be interesting to hear the differences between them.

Good luck, and please let me know how it goes.

I’m sure many people would like to hear the comparison of these two very experienced doctors if you are up to sharing that insight

OK. SO Dr. Cognetti was really nice. I liked him a lot. He wants to try 4 weeks of PT and inceasing my reflux meds just to rule out reflux and muscular tightness. I apparently am presenting with a bit of an odd sore throat as far as that it feels like I have strep all the time and my voice gets really hoarse. So we have a phone consult appt in a few more weeks and we will see what happens then. As far as Dr. Samji, I was FINALLY able to get the plain neck CT that he apparently wanted. I just emailed that to his nurse today so I will see what he says from that. The radiologist on that scan measured my styloids at 2.2cm and 3.3cm and they also found a thryoid nodule. My Eagle issue is much more with the ligaments than the actual styloids so I’m not sure that the 2.2 measurement on my more painful side will actually mean anything to Dr. Samji. I will let you guys know if when I hear anything else!

I have cysts in my thyroid w/ a couple of them being calcified. Thyroid nodules/cysts are not uncommon in people w/ ES though they aren’t necessarily related.

If your stylohyoid ligaments are significantly calcified, Dr. Samji will most likely take notice of that.