Thank you for suggesting a great, reliable resource, sjlash. Often university hospitals (Vanderbilt in this case) are under-informed about things such as ES.
I had my ct scan today. I will be able to pick up my disk on Friday. Praying for some answers. I had a couple of good “voice” days Friday and Saturday of last week and was hoping this went away as quickly as it came. No such luck. Starting Monday my voice is weak again and a lot of pain in my throat, neck, jaw, and ear on the right side. I can literally feel the pointy bone in my throat when I reach back there. That can’t be normal and I forgot to mention it when I went to my Vanderbilt appt. I’m writing down any and all questions when I go for my follow up apt on the 25th. I told the ct scan technician that I wanted my styloid processes checked along with the ligaments for possible ES. I still think I may send a copy of my disc to Ohio state even before I go. Couldn’t hurt. Thanks for all the continued support. Trying to stay positive through all of this. Every time I tell someone about the possibility of it being Eagles, it seems they think I’m crazy. Just ready to be off this emotional roller coaster.
Was thinking of you today. I sure hope it’s pretty definitive when you get it back. No more wondering please!!!
Good work, amanda81! Being specific with the x-ray tech will pay off. I’m glad you’re getting a couple of opinions. Hoping & praying that one of them will support you. If you have a choice, go with whichever surgeon seems most knowledgeable & most experienced.
Please keep us posted as to your CT results & the ongoing doctor situation for you.
Sounds like you’re doing as much as you can to fight your case! Do you have anyone who can go with you for support? And to help you remember the points you want to make?
Hope the appt. goes well, let us know how you get on…
I called and got my apt changed to the 13th. I can’t wait until the 25th to hear my results. I keep having to remind myself today to breathe!. Ugh. I know my airway isn’t obstructed but sometimes it feels like my throat is closing up on me. My husband and family are there to support me the best they can. They’re wanting answers too. My mom is going to go with me next week to help me with what I want to know if they don’t tell me first. Sorry for the rant… just feels good to vent sometimes. Trying to keep a brave face all the while.
Hi amanda81 -
I had that same issue & even more so post op (due to swelling), but it’s largely gone now. I don’t know if it was related to ES & the throat irritation it causes or if it was unrelated, but that feeling can be a bit alarming.
It’s so good to read that your family is fully supporting you. Good plan to have your mother go with you. She’ll be a great advocate. My mother-in-law went with me to some of my appointments. It was good to have her there. She was very vested in me getting a proper diagnosis & treatment.
Just a reminder that people seem to be getting a better response regarding moving forward w/ surgery if they keep their discussions w/ the surgeons to the more general ES symptoms (i.e. throat, ear, face neck pain) & avoid chatting about the “outside of the box” symptoms.
Please feel free to rant any time!! We’re your unbiased audience.
I 100% have been there…waiting, searching, wondering, worrying, having trouble figuring out how to swallow with the ligaments catching on something every time. I woke up one morning in September and told my husband I was worried I was not going to be able to protect my airway. It was a very scary few minutes and all I can say is him calming me down and telling me to show him some nice deep breaths convinced me I was going to be ok. It just took alot of extra work in the beginning to modify how I swallowed. Many times I coughed when my secretions got away from me. Hang in there and vent away to us!!! It WILL get better! Somehow, some way, some day!!!
Glad that you don’t have to wait quite so long, & that you’ll have some support with you. Thinking of you…
Thanks everyone for the support. I was able to get a copy of my ct scan and the overall report to take with me for my appt. The report says everything is normal and mentions nothing about styloid processes or s-h calcifications or eagles AT ALL!! I tried to look at the ct images myself but it’s hard to tell seeing it slide by slide. I may try to see if I can do a 3d image over the weekend. Still going to send a copy off after I get some more information on where to send a copy… I feel like I’m going to make a wasted trip next week because he’s only going to tell me what the report says and dismiss eagles. I swear when I scroll through the slices I can see that long styloid.
Hi amanda85 -
Here’s the link for the 3D slicer program & tutorial as to how to use it. It would be great for you to take some 3D images to the next doctor appt. You can also request that the radiologist who read your scans measure your styloid processes. He should be willing/able to do that. If you have that info to take w/ you, it will be very helpful.
Sadly, among doctors & radiologists there is wide disagreement as to what constitutes ES - i.e. how long the styloids need to be to say they are elongated, do calcified ligaments count in the equation (OF COURSE, THEY DO), etc. As we’ve said some docs won’t diagnose ES even in the presence of elongated styloids &/or calcified ligs if certain symptoms aren’t also present. Getting diagnosed can be so discouraging!! Keep persevering until no stone is left unturned!!
GO! FIGHT! WIN!
I was able to convert the images and the right one def looks quite long, thick, and curves in at the end. The view with my spine is with my jaw and face removed and the right is on the left.
Ouchy! They’re both quite long, curved & pointy!
Wow!!! I think you have something here! Now to find someone in your area that actually knows what they are looking at!!!
Thank you for posting directions on making the 3D images!! Worked perfectly!!
Also I asked the radiologist for a measurement of my styloids and she said I would have to get that from my doctor. :-/
OK, so that’s wrong. It’s the radiologist’s job to measure the styloids, not the doctor’s, but “c’est la vie”. No one wants to be responsible for the details, eh?
Your styloids are impressive & do look long & curvy to me (not a doctor!). Taking your 3-D translations of the CT scan with you will only help promote your case unless your doctor really has no clue about ES. Getting a second opinion is always a good idea as well. You can schedule a phone consult w/ Drs. Cognett or Samji or someone closer to you who is well acquainted w/ ES for a second opinion once you’ve seen your doctor. Choosing an out of area doctor for your second opinion does not obligate you in any way to having to travel to them for surgery.
Was your appt yesterday?
Yes…it was. So my vocal chords have improved since my last appt. He wants me to try physical therapy to loosen the muscles in my neck up. Finally got him to say that was a styloid he was touching in my throat. The first dr that came in tried to say it was scar tissue from my tonsillectomy… I told her it got longer and shorter depending on which direction I turned my head. He thought my 3D scans were “fancy”. Told me that if I was still having the same problems in a couple of months he would refer me to a surgeon. Kind of seem put off on my persistence and seemed like he was just trying to appease me. Told me that they seemed pretty symmetrical (whatever that has to do with anything) and that they wouldn’t just start causing me problems overnight. Sooo… that’s where I’m at. I was so flustered I couldn’t even defend myself anymore. He started talking about how people get the idea of “eagles syndrome” (which he air quoted everytime he said it) go down this rabbit hole and get wrapped up in it. I told him I wasn’t crazy that I just wanted answers. That I would get the physical therapy to see if it helped. He did seem to know a lot about the syndrome but also compared it to Fibromyalgia which has been doubted was a real thing for many years. Says he doesn’t want to put the cart before the horse and doesn’t want to jump straight to surgery if that’s not what causing the issue. Thinks that me trying to overuse my voice has caused the muscle tension. Sorry for the ramble. I kind of feel like I’m in a haze today.