So I decided to go ahead with the surgery with Dr. DeLacure at NYU Langone for left side styloidectomy. Was performed at Tisch.
It was yesterday, just 12 days before my 50th birthday. I was a nervous wreck leading up to the surgery (to say the least). Justin and Brenton at the office were a great help with my many ridiculous questions.
Today is the day after. I’m just a little sore at the site of the incision. I’m up and around doing some house chores and some computer work with breaks. I was only sent home with Tylenol and Motrin regimen. I believe 4.5cm was cut out in 3 pieces. Dr. had come out and showed the photos to my husband.
We’ll see how the next few days go as things heal. The stitches are supposed to come out on Thursday.
So pleased that you’ve had surgery…I’d be very careful not to overdo things, especially with household chores, you need to heal & if you’re not very careful you could pull the tissues as they heal (I speak from experience!)
Swelling can peak at 3-5 days, plus members often seem to feel worse days 5-6, so don’t worry if you don’t feel so good for a few days, it’ll be normal!
Hope that you soon feel the benefits of surgery & take care!
You’re amazing! Glad you felt good enough the day after surgery to be productive. As Jules said be careful, the first couple of days post op are the “honeymoon” period for most people, then the reality of the surgery rears it’s ugly head & pain & inflammation settle in for a period. Hopefully you’ll continue to fare as well as you are. Some of our members have been so fortunate!
Icing your neck for 15-20 min on & at least 45 min off is important. Some doctors also prescribe a course of Prednisone post op to help w/ swelling. If yours does ramp up, ice will be your best friend & you can call Dr. D & ask for Prednisone.
Thank you all for the kind words. I am waiting for the day 3 and forward pain. I was not sent home with any prescriptions at all. Just told Tylenol and motrin. The post op instructions don’t even mention ice. I asked the nurse and they weren’t sure that they want any pressure on the stitches. Unfortunately it’s the weekend, so will call Monday first thing to get more clarity.
Will keep you updated how things go.
Glad so far everything went well! I am considering Dr. DeLacure for surgery. Did he take everything out to the base? How long was your surgery? And last question! Did you have any vascular symptoms? No need to answer right away. Get some rest! Keep us updated!
So it is now a week from the surgery. The stitch came out yesterday. He did show me a photo of the styloid in my neck and what was taken out (in 3 pieces). It was about 4cm.
The surgery was about an hour and half I assume with the prep getting sedated. I took about 2 hours to wake up, maybe because I took clonazepam beforehand for my anxiety.
I was scared as heck and everyone there treated me with great respect.
I have only taken tylenol and advil this whole week, no prescription meds. Iced only a bit the first 2 days. Then switched to warm compress occasionally. I have no “first bite” syndrome, no drooping of my lip or anything. I’ve actually been eating nuts since the day of the surgery without any issues. The incision is only about an inch on my neck, swollen area a little larger. I’ve been able to work at the computer all week, just not long periods.
Dr. Delacure did say he looked at this site over the weekend and saw that there is a lot of misinformation on here. He would actually be interested in reaching out by phone to whoever runs the site to get some correct information on here for people to see.
I would suggest meeting with him to get your questions answered.
Glad you are doing so well! I remember Dr. Delacure said he has a technique to help avoid fbs. Good news. What were your symptoms? Do you feel any improvement yet from them?
Maybe Isaiah or Jules can connect with Dr. DeLacure? There are not just a few but many many articles on vascular eagles and so many people who got relief from vascular symptoms after styloids were removed. I know Dr. D has thoughts on that and I would love to hear them on this site
My original symptoms started with a feeling like something was stuck in my throat. Then it was bothering a tooth (which was pulled and implant done). But things never felt right, although everyone I saw said the implant looked perfect. I then started having pain in my upper teeth and then numbness in my cheek, eye, eyebrow, tongue (trigeminal nueralgia). My Oral surgeon sent me to Dr. Gary Heir, a professor of Orafacial pain at Rutgers University Dental in Newark, NJ. He had a 29 page questionnaire before I went in. He knew what it was before I even walked in the office and confirmed it with a pano xray. At this point, the pain is still there as before. The first 2 days after surgery, the pain was gone, but then day the swelling set in and the pain is back. Hoping as the swelling goes down and the nerves calm down, the pain will as well.
Dr. Delacure did contact our forum, & I emailed Mod Support about his request to correct information regarding his approach & philosophy.
We do our best to accurately present information about ES on our forum. Much of what we share comes from published research papers, but some is from the experiences of our members. No doctor who does ES surgery will ever be able to fully understand how far reaching & personally devastating the symptoms can be without experiencing ES themselves. I am interested in what he thinks is misinformation. As I said, it’s one thing to surgically repair a physical problem for someone, but another thing entirely to actually go through the symptoms, surgery & recovery.
Great. I’m glad he reached out. Some of my questions to him he assumed were coming from this forum. Particularly the ligaments and the use of steroids after surgery.
I do keep crazy notes and facial diagrams that I color with different colors to show where the pain is on a particular day related to what, if any, drugs I had taken for the pain. Hoping this will explain to the doctor better than I can verbally (and I can’t remember from day to day the details). I know having it is one thing, but if I can help explain best I can my experience, hopefully that can help in treating others better in the future.
I love your creative approach, deezy456! I hope your detailed information is taken to heart by Dr. D.
Any good doctor should be willing to learn both from his surgical experience w/ each patient and also from each patient’s experience w/ his/her illness. Every person is unique in the way his/her body handles a given malady. There are often known telltale symptoms but some syndromes, such as ES, can present w/ symptoms that are unique to one person without matching what another ES patient might experience or even what research/textbooks say is the norm. Some doctors are pretty quick to dismiss an ES diagnosis even when elongated styloids &/or calcified stylohyoid ligaments are present, IF the symptoms exhibited don’t match what those doctors have learned ES symptoms should be.
My experience (I’m not a doctor), from almost 6.5 years on this forum, says that if a CT scan shows elongated styloids &/or calcified stylohyoid ligaments, & the person has nerve-related symptoms anywhere in the upper half of the body (belly button to top of head), then ES is a diagnosis that MUST BE considered.
I definitely had another head/neck surgeon that I met with completely dismiss my mentioning Eagle Syndrome, even though he saw the elongated styloids on the CT scan. He said it was a controversial diagnosis and would never do surgery on it. He referred me out to a sports orthopedic for my cervical spine.
I did try to upload my diagrams of where my pain is, as it may help others who are more visual types. I got an error though…
Sadly, there are many doctors who are ignorant about ES. I’m sorry you wasted your time & $ seeing one of those.
I’ve been getting an error message when I’ve tried to upload things, too. I keep meaning to mention it to ModSupport. I’ve taken to dragging whatever it is I want to post from my desktop & dropping it into the post I’m writing. That has worked for me so far.
I love the way you’ve explained your pain via pictures, deezy! No doctor could have lack of understanding w/ those! Looks definitely like trigeminal, facial, possibly accessory & vagus nerve irritation. I hope you’re feeling a decline in symptoms as you move deeper into your recovery. Your incision looks really good! Dr. D does nice work.
I was thinking you might want to add the doctor that actually diagnosed me. Without his diagnosis, I would surely be floating around still from doctor to doctor looking for an answer… It was Dr. Gary Heir, an Orafacial pain specialist, Professor at Rutgers University Dental School In Newark, NJ. He was actually the one that gave me the blank faces to draw my pain in.
