After a couple of decades of being misdiagnosed I finally got the diagnosis of Eagle’s Syndrome last year. At first I saw the only otolaryngologist who supposedly treated Eagle’s in New Jersey that took my insurance, and he didn’t think doing surgery on me would do enough help to make it worth it. I don’t think he’s done many of these surgeries and would only do so on a very severe case with very clear symptoms where that was the only thing wrong with the patient. I don’t remember his name. I searched through this group to find a second opinion and through you all found Dr. David M Cognetti, MD in Philly — and, long story short, I am SO GLAD I did!!! Dr. Cognetti and his team are amazing. He took out the 6cm left styloid and calcified ligament on 4/5/24 and I’m doing great 2 weeks post-op. I’m seeing him virtually again on 5/30/24 to discuss doing the right side, which is less symptomatic than the left but is symptomatic enough for me to want to risk the surgery.
The longer story: I booked a virtual appointment early last year with Dr. Cognetti and got the first available appointment in December, a 9 month wait. The virtual appointment left him feeling like he was unsure whether or not surgery would help me, but he offered an in-person appointment to “stick his fingers in my mouth” to see if he could cause any of my symptoms. I finally had that appointment last month, and he did the exam he described. It was unpleasant, and also a bit inconclusive, but he did hit one spot where I jumped on the left side and felt that was enough evidence to justify the surgery. It was scheduled for 4/5/24.
I had to check in at 10:30am and was not taken for surgery before 1pm (they were waiting for the operating room to be ready). They were extra, extra careful about my allergy to adhesives and did everything they could to make me comfortable and keep me safe. Everyone on staff told me how amazing Dr. Cognetti is; the anesthesiologist described him as a “stud”, and one of the nurses a “rock star”. His bedside manner is great and he also seems to really know what he’s doing. My only trouble waking up from the surgery was shivering like I’d just been pulled out of a frozen lake, but my vital signs were fine and I eventually calmed down. During the process, though, I coughed really hard and gave myself a huge bruise and rash on my neck below the incision line. It was the only complication.
In the recovery room I cried when I clearly heard the beeping of the machines out of my left ear and noticed I wasn’t feeling overwhelmed by the noise! It’s been over a decade where I have gotten easily overstimulated and my whole experience of that has been reduced to a very tolerable level since the surgery. They held me longer to observe the bruising/swelling on my neck, but I didn’t feel like I needed anything for the pain. For the drive home I swallowed 2 uncoated Tylenol (one at a time) before being released around 7pm with no difficulty whatsoever and felt nothing stuck in my throat afterwards. (I have since had a little trouble swallowing again, but only sometimes now and the feeling goes away after a while.) I have not taken anything other than Tylenol for the pain this whole time, and only needed it steadily for the first day and a half.
Over the next few days I found I could make a tight fist with my left hand again! The constant pain I didn’t even realize I’d been suffering from in my left armpit and along the back of my left arm is gone! And I could hear absolutely clearly out of my left ear. It feels like 10lbs of cotton has been taken out of the left side of my head! My sinus pain and congestion on the left side is gone. The horrible shooting pain in my back left molar is gone! The tooth feels sensitive, but the nerve pain I’ve been dealing with for at least 3 years is GONE. I’ve been drinking ice water and eating salads and cold fruit and this alone has made my quality of life SO MUCH better. I can also eat nuts again without my ear and jaw hurting. The diagnosis I got 30 years ago for TMJ was wrong — the symptoms of it on the left side are completely gone now.
I am experiencing a little bit of numbness in my chin (which wasn’t there before), and my left pinky finger is still a little numb. My left ear occasionally has a shooting pain through it, and occasionally a dull ache, but I feel like it’s all going to work itself out in time. I still marvel that I can hold a full glass of water in my left hand now and not feel like I am going to drop it! I’ve been seeing doctors trying to help me with my hands for more than 20 years, and they told me the trouble was coming from my neck but had no better help for me than that. I want the right side done to have this chance with my right hand — I am right handed and had to give up drawing/painting and crocheting a long time ago and miss both terribly. I’m also hoping to lose the 5lbs of cotton feeling out of the right side of my head. I feel very uneven right now and it’s still pretty hard to hear in a noisy place out of my right ear. The hearing tests have always shown my hearing to be in the normal range. It’s been a long decade where a whole lot of small symptoms added together to make me pretty disabled. I lived out of my car for a lot of it. I was alive but not really living. I have hope for my future for the first time in a very long time.
A note to NJ patients who have Medicaid and want to see Dr. Cognetti in Pennsylvania: NJ Medicaid automatically qualifies you for Jefferson’s Financial Assistance in PA (it’s what they call their Charity Care), but it can only be approved at the beginning of the month for that month.
Here are some of the notes Dr. Cognetti put into MyChart: A 2.5 centimeter incision was planned in a natural crease in the left upper neck. This was carried out with a 15 blade. It was carried down to subplatysmal plane. I then bluntly dissected under the submandibular gland to identify the digastric muscle. I then bluntly dissected over the digastric muscle and I was able to palpate the tip of the styloid process. The styloid was then skeletonized. I had difficulty fracturing it with my finger. When it did fracture it fractured at where across the transverse process of C1. The distal aspect was removed. A Kerrison and pituitary were used to further remove and reduce the proximal aspect. This was taken down to a very small stump which was above the transverse process of C1. The wound was thoroughly irrigated. No drain was utilized. It was closed in layers with 5 0 Monocryl suture for the skin. The patient was awakened from anesthesia. She was extubated without difficulty.
The bone, image from MyChart:
When I got home from surgery:
Today:
