I’m so frustrated and I need to vent to those who understand what I’m going through. Thanks for reading this.
I’ve had so many CT scans over the past 4 years and no one has mentioned my elongated styloids. I called every imaging center and asked for an addendum with the styloid measurements. So far I have recieved 3 reports with all different measurements (from 2.0, 2.3, 2.6, 2.7 to 3.3cm) All say I have a calcified stylohyoid ligament as well as elongated styloids.
I met with a surgeon here in NYC named Dr. Kutler who has performed about 30 Eagles surgeries. He does not believe Eagles can cause IJV compression, tinnitus or neck pain. He’s had some patients with occipital pain. I have no throat pain so it was difficult getting him to believe I had a diagnosis of Eagles. UNTIL I showed him my styloid process poking through my tonsillar fossa. Suddenly I have Eagles Syndrome. So we scheduled surgery for an intraoral approach to the right side and the transcervical approach to the left side. After my CT scan (he wanted a recent one) he was supposed to call me to discuss the results (I had the scan last Tuesday. I still haven’t heard from him.
I was able to see my radiologist report. This radiologist measured my styloids at 2.6 cm and 2.7 cm and stated my styloids are not elongated and there is no calcified stylohyoid ligament. I called the radiologist today to ask if he measured in 3D. He was extremely rude. I let him know I had previous reports of all different measurements as well as the calcified ligament. He again said my styloids were not elongated. I asked him what then was the bone sticking through my tonsillar fossa that Dr. Kutler pushed on that caused me to jump out of my chair in pain? He said it probably was the ligament and he’s sure it wasn’t pointy. At this point I told him it was pointy, it hurt and was my styloid. Then he said “I’m sure you’ll find a surgeon who will agree to operate on you”. He was a complete jerk. He kept citing Dr. Eagle from 1937 and what he stated. I even corrected him on a few things he had wrong about Dr. Eagle’s definition of Eagle Syndrome. He also said he spoke with Dr. Kutler about the results.
I called Dr. Kutler’s assistant to ask her to ask Dr. Kutler to call me to go over my CT scan and let me know the specifics for the surgery. I’m still waiting to see if he can do both sides at the same time. It’s scheduled already for 12/12. I measured the styloids myself with the 3D software and both sides were around 3.3 cm. So if I go into surgery without Dr. Kutler measuring the styloids himself he’s basing the length off of inaccurate measurements. He should be looking at the scans himself. It’s very easy to drag a green line to measure the styloids. Again, still waiting for over a week for a call to go over my CT scan.
At this point, I’m not comfortable with Dr. Kutler doing the surgery. Am I being ridiculous by thinking this? It’s been 4 years and 24 doctors to get to this point. I was hoping for a surgeon who was at least a little compassionate and accurate.
I would really appreciate any thoughts on this before I cancel the surgery.
You are ABSOLUTELY not being ridiculous of being cautious. It is a very serious surgery and you don’t want to risk here. If you have a chance, don’t jump into the surgery with Dr Kutler but get a second opinion. Cannot say who is close to you, but you might want to contact Dr Cognetti in Philadelphia. And stay strong.
@vdm Thank you! I called Dr. Cognetti’s office today. He’s an hour and 21 minutes from me. I’m going to drop off my records and CD’s of CT scans tomorrow morning so they can copy them and wait for a call back to see if he will see me.
I totally agree with @vdm. You need an experienced surgeon who has dealt with hundreds Eagle Syndrome. You are absolutely doing the right thing here. Good luck.
And to add to the wise @KoolDude’s words, you really might want to be operated by someone who believes in the condition and the symptoms it may cause, because that speaks of the surgeon’s ability and skills of dealing with it.
If the surgeon denies the vascular Eagle’s and especially says “I operated on many patients and none of them got improvement of these symptoms”, you really don’t want to be just another case of “Eagle’s does not exist because if it existed, your symptoms would be gone after the surgery”. Your chances of getting fixed are much higher after being operated by a surgeon with many favourable outcomes as opposed to unfavourable outcomes, and especially open-minded attitude towards this very rare and underexplored condition.
@Danielle1 - I have nothing to add to what @vdm & @KoolDude said except to say I’m sorry for the inconsistent information you’ve gotten, lack of support, & the frustration & confusion it is causing you.
I personally would be leery of a surgeon who would use a different styloid removal approach for each side. That doesn’t make sense to me.
Hi there! Im new to all this but wouldnt the different measurements you first described mean that your ligaments are becoming more calcified over the last four years, thereby elongating the styloid? This is the only logical conclusion I could see.
The radiologist was probably only measuring the styloid process bone and not the bone and calcified ligament, thereby showing a normal styloid process bone size of 2.5cm. It seems terms are getting mixed up in these conversations your having, potentially? Again, Im new to this, so please dont bite my head off!
Measuring the styloid lengths accurately is notoriously difficult, and we often see members reporting after surgery that the styloids turned out to be much longer than estimated. Add to that the ignorance & inconsistency with radiologists- some measure just the SP, some add any calcified ligament on to the measurement, others don’t look for calcified ligaments at all…!
I think you’re totally right to be wary of this surgery, as @Isaiah_40_31 says why do the styloids different ways, plus intra-oral surgery is much tougher to recover from & not as good to see the styloids.
As @vdm & @KoolDude have said, Dr Cognetti is very experienced so as he’s not too far, would definitely be worth seeing/ consulting. Just check that he’ll remove your calcified ligaments as well as shortening the styloids.
Best wishes, & hope you’ve got things off your chest!
@Isaiah_40_31@Jules@KoolDude@vdm@LoriBD Thank you for all of your advice. I’m in the waiting room at Dr. Cognetti’s office right now. I drove an hour and a half to bring my scans to his office. They’re so nice. They’re uploading them right now while I wait. Then, someone will call me for an appointment after Dr Cognetti reviews them. I’ll be canceling my surgery with Dr. Kutler. It is so comforting having everyone here. I’m so grateful I found this forum. I will keep everyone posted.
I went through the same thing for five years with neck pain until I found an ENT who took an interest. He said a simple flat X-ray was most useful to him. I also had a panoramic done by my dentist five years before that and looking back it showed it clear as day. Glaringly, if you are looking for it. I jumped out of the chair too because he actually broke it when he was feeling for in under my tongue. But strangely that gave me a few days relief from other symptoms until the surgery a week later.
Hi, glad you have found a experienced surgeon to help you. I’d add that I do not believe length alone is the sole factor that is relevant. Based on my scans I think proximity of C1 to styloid is a major factor as the narrow gap compresses the JV. A child could see that from my scans. Sorry for all your past medic issues, sadly your experience is one most of us share. Good luck. D