I’m back with questions.
I went to see an ENT today. He told me he saw one patient when he was a resident so clearly not an expert. He did know that palpating the tonsillar fossa could help with the diagnosis. He didn’t know that injecting the tonsillar fossa with steroid/lidocaine could also give some clues. He offered to inject me on March 18 and now I have to decide if I want someone who has never done so to do the injection. I’m not worried about the injection but I am worried that if he does not know what he is doing, not having any change in my symptoms will lead me no closer to figuring this out.
So I’m thinking of going to see Dr. Cognetti or Samji for an in person consult and I wanted to ask the WA veterans their opinion if they think an in-person consult will be able to give the surgeon more info to make a definitive diagnosis or if I should just have a phone consult.
I have other degenerative issues found on MRI which includes C1-2 degeneration and mild TMJ arthritic changes. Both of these can cause headaches although I find it hard to believe that they would cause a constant 5 year headache … but what do I know.
So, I’m looking for some advice on how to make sure it’s really ES. I have longishs styloid (3.2 and 3.1) with jugular compression (every ENT I have spoken to thinks this is no big deal) and some sort of lump in my throat. Many of you have very long styloid and a severe lump and click so I can see how a clear diagnosis for you make clear cut sense.
Thanks for considering.
Am I dreaming by wondering if your ENT pulled up your scan and pointed things out to you? Was he able to offer any reading on whether your styloids do something funky like turn or are they overly thick? Any calcification of the actual ligaments? That’s something that he offered the injection - tempting to get it done quick and easy near home. And two weeks from now! Did he happen to broach the subject of surgery and if any of his colleagues are familiar with it? I’m guessing no.
How do you cope with daily headaches by the way? Do you ever have an “off” day where you feel ok-ish? You have so many good years left in your life to just accept daily headaches!! We must figure this out!
You are correct…I’ve said this before - I let anyone and everyone feel the click by letting them touch my neck because it gave me validation to have something tangible in this medical mystery journey. I hate that you have all this uncertainty swirling in your head right now. Hugs.
SewMomma! You’re definitely in sweet dream land. Nope. Didn’t even want to look at my scans. He said the report was good enough. He confirmed how hard it will be to find a surgeon to operate and had no suggestions as to who I could contact. It was basically pretty useless. I was so disappointed.
I called Drs. Samji and Cognetti today to see if they received the CT scans and to find out if either of them had a suggestion on how a Canadian can get covered for complications. Neither had yet received the scans and so I will wait till I hear from their offices.
In the meantime, I’m considering asking my doctor for Lyrica and Toradol (strong anti inflammatory) as I’m on the verge of not coping anymore.
Thanks for checking in, SewMomma.
Ugh big help he was. You are your own advocate. Meds help. I took Celexa to stop worrying and Tylenol PM at night to have a break from the click. Still on both of those daily meds. Use all tools you need to get through this.
I can offer you this information about Dr. Samji - He considers any styloid(s) that are longer than 2.54 cm (1inch) to be elongated, & thus, based on your styloid length alone, I suspect he would say you have ES. Additionally, the jugular compression is also likely a contributor to your headaches, & contrary to what the ENTs have said, is a big deal. Disc degeneration in the neck often causes neck pain & nerve pain or weakness in the arms, hands, fingers, etc., so your C1-2 disc degeneration may not be causing those headaches at all.
The styloids/ligaments don’t always create a lump or click so you can’t really use the lack of those as a diagnostic tool. I would say that if you’re comfortable w/ level of experience of the ENT you saw today, an injection on 3/18 might be helpful in alleviating some of your pain even if only temporarily. Though he doesn’t know much about ES, he is familiar w/ the area of the body in which he’d be doing the injection.
As long as Drs. Samji & Cognetti receive your CT scan & report, having a phone consult would be the best next step as they won’t really tell you anything in person that you can’t hear over the phone. Plus having a phone consult will save you the cost of traveling.
SewMomma eluded to shape/thickness of your styloids & possible ligament calcification. These can also be important in diagnosing ES when the styloids aren’t super elongated. If your styloids are angled, twisted, or very thick, length may not matter. Additionally, if your s-h ligaments are even partially calcified along w/ your elongated styloids, your symptoms could be exacerbated.
I think you’ve made a wise decision to consult w/ two ENTs who are very experienced w/ ES. Hopefully you’ll get answers to your questions and a path for moving forward with treatment from one or the other.
I think that sometimes the only way to truly diagnose ES is to have surgery & see what resolves! Seriously, if you have bilateral jugular compression & elongated styloids then that is as close as you can get to having a diagnosis!
Some members with vascular ES have been sent down the Intracranial Hypertension route, & had the pressure in their heads measured (but this isn’t a great procedure to have done either), not sure if this would be any easier for you to get referred to someone for that in Canada? Have you looked into whether there’s any skull base surgeons in your area too?
As for the injection, it doesn’t always help, what’s your gut feeling about the doctor’s competence? Some members have had it done with an ultrasound to guide the doctor . I think on the whole it’s not made people worse- one or two have found that maybe- so coukd be worth a try, but if your headaches are down to the jugular compression it won’t help them. Big hugs to you…
Thank you SewMomma, Jules and Isaiah for your ongoing help and support.
Isaiah, the radiologist who read my CT did not think my styloids were thick or the ligament calcified. Just 3.2 and 3.1 cm respectfully, and mild compression of the jugular. Oh, and the left has a healed fracture (what!!) but my symptoms are more right sided so that does not make any sense.
Jules, I called just about every skull based surgeon in Toronto and so far, two assistants have called me back and said that I should have my family doctor send the referral but that they do not know if the surgeons know anything about Eagle’s Syndrome. I am seeing my family doctor on Thursday to ask for the referrals to be sent. Of course, if either is able to provide any assistance, I will let the other Canadian’s know. Unfortunately, given Canadian wait times, I will likely not see them for many months, but at least it’s a bit of a start. I would prefer to have the surgery performed by Drs. Samji or Cognetti, so if I can figure out the insurance issue for post operative complications, that’s likely the route I will take. Right now, it’s a waiting game.
It’s just so confusing to me. Why do doctors like Samji and Cognetti recognize the involvement of the jugular vein in ES symptoms, but the 3 ENTs who I have spoken to say that the jugular compression is no big deal? I think I’ve asked that same question on this board many times, it just doesn’t make sense to me how their opinions can differ so much.
Okay, I’m ranting again. Need to work now. Thank you again.
It is so frustrating- the first consultant I saw knew about ES, but told me it couldn’t affect the blood vessels! Luckily I’d learnt lots from this site & had another doctor to be referred to, who believed me! Oh to have been a fly on the wall when the first doc was sent the CT report & post-op reports…
Hope that you can work something out, hard to believe that there’s no-one in Toronto! Big hug to you…
Jules. I’ll totally take your hug. I have a question for you given that you had vascular involvement. Do you have any consultation reports where you can quote for me what a ES doctor has written in regard to the vascular component of your ES? For example, the surgical note or the pre or post operative report. I’m interested to hear the wording of how they describe the ES and the vascular component.
So on one good note, the good Dr. Cognetti is going to do my phone, well actually FaceTime, consult on March 13. I will be out of the country and I will just pray for proper wifi service and that the call actually works. If I didn’t take March 13, his next availability is in May which is too far away given how anxious I feel.
SewMomma - a few more babysteps.
I think this is more like a toddlerstep!!! How wonderful it will be to be heard and listened to! I wrote it on my calendar
SewMomma - how is your tongue feeling?
Hi! A little better with each passing week! Breaking news…Sew Momma had a breakthrough with eating this weekend. Stay tuned to “Thankful for you all” for the latest!
Sorry SewMomma. I forgot that you’re so organized and need to keep all your updates in one place. I’ll look out for your latest post.
Ha ha I channel my inner Mary Poppins.
I don’t have any reports I’m afraid; I think the doctor worded it as bilateral jugular compression by elongated styloid processes, but not 100% sure. He also mentioned Intracranial Hypertension at the first appt., & discussed symptoms & the possibility of a spinal tap & investigations, but when he had the CT result he was happy that it was compression by the styloids which was causing it.
I hope your appt. with Dr Cognetti goes well & all technical elements work!!
You need to go to an experienced doctors. I went to so many doctors in Houston and none of them knew how to diagnose ES. Once I moved to Oklahoma and went to OU Physicians (Univ. of OK) I got diagnosed by Dr. Greg Krempl after 17 yrs. on the merry-go-round. Once I got diagnosed, I had the surgery a week later.
I don’t understand all this going back and forth with trying to figure out what is going on with other symptoms. If you are having poking going on under your tongue 24/7, like I was, and everything was getting stuck going down and you felt sick to your stomach…just go to an experienced doctor and have the surgery. It will only get worse.
Thank you Hadassa for your helpful info. I’m happy for you that after 17 years you finally got relief.
Don’t know how I didn’t see this conversation before now, but I’m new to the site so still learning it. I feel like I’m reading about myself here…when you have a gut feeling of the ES being a big culprit, but all the doctors poo-poo it. It’s reassuring to hear from so many others that have found help. I hadn’t thought of a virtual appt with an expert, but that’s a great idea! Best of luck to you Headcase and everyone else, too.
Best of luck to you too! What does your gut say after reading some of the stories here? We all have doubts. But there are soooo many success stories here. Including me! I can’t wait to have the second side removed. Other consultations seem like a good idea for you since your local people have been weak.