If you read my prior post you know my situation. I have a follow up visit next week. My worry is that I will not be diagnosed, and continue living with this unknown pain and discomfort.
That aside, if I do get diagnosed which doctors would you all suggest best for surgery. I live in upstate New York so I am willing to travel within the state or neighboring states… I just want someone with the most experience.
Also, say I don’t get a diagnosis… is there a way I can send a CT scan to a more experienced doctor for him/her to take a closer look? I have good health insurance if that means anything.
I hope that you do get a diagnosis at your next appt, then at least you know what you’re dealing with…I think you’ve seen the Doctors List, but here’s another link in case: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Quite a few people have seen Dr Mark deLacure, NYU, New York City (has done surgery on 2 or 3 members) https://nyulangone.org/doctors/1326049453/mark-d-delacure
Otherwise in PA Dr Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 has done many successful surgeries on members. He does do phone consults so you can send your scans to him, but he doesn’t do ES surgery all the time so has a longer wait time. (David M. Cognetti, MD - Jefferson University Hospitals)
Also in PA is Dr Jason Newman, Dr Jason Lee, U of Pennsylvania, 800 Walnut Street
18th Floor, Philadelphia, PA 19107, (215) 829-5180 who is also very experienced.
(head and neck, skull base surgeon) Jason G. Newman, MD, FACS profile | PennMedicine.org
And Dr Hackman in NC has done lots of surgeries recently. UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484 (Does intraoral robotic surgery - removes styloid to skull base & stylohyoid ligament AND external surgery). Trained Dr. Patel, who is now doing ES surgeries.
Dr Samji in CA does also review scans, and we’ve had members send theirs off for review to online radiologists when they didn’t get a satisfactory report/ correct diagnosis. Plus it can be worth asking the radiologist who did the report to review it & check styloid measurements, supposing they miss something.
Let us know how you get on…
Jules gave you some great info but I wanted to include one more doctor who’s a bit closer to you - •Dr •Donald Annino, Brigham and Womens, Boston (surgeries on several members), (617) 525-6500 Donald J. Annino, Jr., MD, DMD - Brigham and Women’s Hospital
We have several members who’ve had ES surgery done by Dr. Annino & as far as I know results have been overall good. A couple of our members didn’t have a great experience w/ Dr. Delacure though he did help others. No doctor has a 100% positive track record though.
As Jules noted, Dr. Samji & Dr. Cognetti will review scans & discuss them by video conference. There is a fee for that. Not sure what Dr. Cognetti charges but Dr. Samji’s fee is around $650 for 45 min. Often insurance companies will pay all or part of the cost of this type of consult. You should check with yours to see if that’s the case.
Update -
I just went to see another ENT doctor in my area. He felt for the stylus but said he couldn’t feel it. He did mention on my CT scan that the left stylus looked a bit longer but there wasn’t a measurement for him to see. I felt the pain when he felt for the left styloid but again he said he could not feel. He is ordering a measurement on the styloid and said even if it comes back not over 3 cm he was willing to do surgery to take some of the styloid away.
I asked him how many surgeries he has done, he told me a couple dozen (more than anyone in the area). His name is Dr. Steven Parnes. Has anyone heard of him here? I am nervous about having him do surgery as I’ve seen everyone express how important it is to have an experienced doctor.
Well for now, still no diagnosis… but where he felt is throbbing with pain now, so I really have no thoughts of another diagnosis besides ES.
The styloids can’t always be felt in the throat even when they are very long. It depends on the angle they are growing. Again, other features of the styloids such as how thick, twisted, or curved they are can play into ES symptoms without the styloids being elongated. Not many doctors take these other styloid features into consideration but only look at length.
The fact you’ve got pain/increased symptoms from Dr. Parnes probing is a good indication that you do have ES, & I hope the info he gains from the radiologist’s measurement is helpful. Some doctors prefer to read the CT scans themselves & do their own measurements as they often find the styloids to be longer than the radiology reports say & even during surgery have noted the styloids are longer than expected.
It’s good that Dr. Parnes has done as many ES surgeries as he has. That means he has some decent experience, however, I would make sure that he doesn’t just shorten the styloid but removes it as close to the skull base as is safely possible & that he removes any significant stylohyoid ligament calcification that may extent beyond the tip of the styloid (not everyone has this but some do, & it needs to be removed along w/ the styloid for best results).
Please let us know what the radiologist says about your styloid length & whether Dr. Parnes will help you going forward. Wishing you the best!
I agree that as you’re hurting more from being poked about it does look like ES is possible…the doctor who diagnosed me felt mine externally & that really hurt afterwards! @ESx2 had surgery with Dr Parnes last year, here’s a link to the discussions: Life without Surgery? Dangerous? - General - Living with Eagle 10th day post op exam / discussion with my dr - General - Living with Eagle
You could send a message to see how things have gone?
If you see Dr Parnes again, & consider surgery with him, I’d suggest asking whether he just does intra-oral surgery (members have had good results with this, but external surgery does give better visibility, and more of the styloid can be removed. It’s also good to ask how much he’ll remove, the more the better, & whether the remaining part will be smoothed off, as Isaiah has said. Also ask if monitors nerves during surgery, and if he does anything to help with swelling afterwards. (Not all doctors do, but some prescribe steroids or put a drain in)
Hope that you can get some help soon!
I just got the measurement results… The left styloid (symptomatic side) measured to be 2.6 cm and the right measured to be 2.4 cm. These measurements make me feel lost again! They don’t seem very long yet I don’t know why I feel the way I do. This is exhausting
Measurements aren’t always accurate- we often hear that members’ styloids are longer when they’ve had the surgery than the measurements suggests. There is a mention of this in one of the research papers.
But also the width of the styloids, the angle they’re growing at which can cause symptoms, and also whether they’re pointy at the end… Did the report mention any calcifications on the stylo-hyoid ligaments? Are you able to get a copy of the images?
Also, make sure to mention styloid angle, thickness, & pointy-ness to the doctor. These features may be more obvious in a 3D image. Also ask whether or not there is calcification on your stylohyoid ligaments. Some people w/ ES don’t have elongated styloids but they do have calcified s-h ligaments rising up from the hyoid bone or inbetween the styloids & hyoid.
Hopefully your doctor will be able to show you 3D images of your scan. It’s hard to visualize what you’ve got going on just looking at CT slices.
I just had my follow up visit with the dr. He wasn’t convinced that eagle syndrome was the problem because I hadn’t fit the criteria. He scoped me out and noticed that my lingual tonsils were prominent and mentioned it could be my issue. He said he would take them out and mentioned if he could feel my styloid the day of surgery he would go after that too, but said he didn’t want to be messing around with it if he couldn’t feel it.
I feel a bit stressed out, here comes yet another surgery that “could” fix the problem. Words of encouragement please
We’ve had a number of members who’ve been given that very same advice - tonsils first to see if that helps (which often it does not when the symptoms are from ES). Being able to feel your styloid during a tonsillectomy & spontaneously removing it DOES NOT sound like an optimal situation. We’ve had members who’ve had intraoral styloidectomies where tonsils were removed first to get them out of the way so the styloidectomy could be done more easily. The recovery from a tonsillectomy as an adult is pretty painful & no fun. When you add the styloidectomy to the mix, it’s a pretty miserable month long recovery.
If I were you, I’d get a second opinion from one of the doctors on our list i.e. someone like Drs. Cognetti or Samji who do video consults since both have done many ES surgeries. There is a charge, but most health insurance companies will pay at least part of the fee for a video consult. You should check w/ yours before making an appointment.
You can also post a couple of your images on here (3D preferred as some of us aren’t great at reading CT slices), & we can give our non-medical opinions. If you need help making your CT into 3D images, there is a post on our forum w/ instructions (Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial) & others on the internet.
Intraoral surgery can work well, but it is difficult for the surgeon to remove as much of the styloid this way. Given that yours aren’t that long, it’s unlikely the surgeon would be able to remove much, so that quite likely wouldn’t resolve your symptoms, especially if it’s more the width or angle which is causing the problem…As Isaiah says, it’s a tough recovery as an adult for something which may not help you much, so I agree that getting a more expert opinion would be advisable first.
Do you guys think I should get my left lingual tonsils removed and go from there? I was thinking about going back to my ENT that performed my second tonsillectomy to remove the lingual tonsil as she did a nice job. I don’t want to say I don’t trust Dr. Steven Parnes, but he is a bit older and I would feel more comfortable going through with surgery with someone who I know is reliable.
Also, the more I think about the discomfort being from my lingual tonsils the less I want to blame ES. I guess if I get it removed and symptoms don’t go away, I will be more likely to point in the direction of ES.
Dr Cognetti doesn’t remove right back to the skull base, so he might not help you as yours aren’t long, but it’s certainly worth a try. It’s up to you about getting your tonsils removed, I suppose it might help you rule ES in or out, it could be worth considering steroid/ lidocaine injections into the tonsil region otherwise which if it helps, might confirm ES?
I agree w/ Jules that getting a lidocaine/steroid injection first might also rule ES in or out & the tonsil removed depending on the results of the injection would be the next step. Seeing a doctor you know you like & have surgical experience with is very important. I’d go back to your first surgeon as she’s tried & true. Get a second opinion regarding the tonsil(s) from her & ask her about doing the injection.
Hey just an update… I had a nerve blocking shot last week which didn’t do anything for relief. I’m planning on going ahead with the lingual tonsillectomy, scheduled for June 8. Even though my doctor said she isn’t sure if it will alleviate my discomfort or not, we are hoping it works. I’d like for your prayers!!
