Personally it wouldn’t bother be to have the consult one day and surgery the next if I had to travel! By booking the consult, you are already thinking about surgery. But if you don’t think you will be comfortable, definitely ok to have them only schedule the consult and go back for surgery.
I sent my own CT to Dr Cognetti last week and they scheduled me for an appointment in March. I am confused because my local doctor says that my CT does not show eagles…. But Dr Cognettis office scheduled the appointment after reviewing my imaging… hopefully they can still help. My primary symptom is one sided ear fullness/pain.
@Katie2 - Dr. Cognetti turns down inquiries for a consult with him if he doesn’t see an elongated styloid(s) or calcified stylohyoid ligament(s). The fact you’ve been given an appointment says he saw one or the other of those in your CT scan.
There are many doctors who don’t know exactly what to look for in a CT scan to ID Eagle Syndrome. There are also differing opinions about how long a styloid needs to be to cause symptoms. We know from our experience here that even a styloid that is normal length can cause vascular compression &/or nerve pain symptoms depending on other physical features besides length.
Thanks so much for this insight! I felt bad for keeping my appointment after hearing from the local doctor but also wanted his opinion from his lengthy experience in eagles.
My ear is driving me nuts, there is certainly something wrong. I am still very hesitant to believe that this is just TMJ.
I have an appointment with Dr Annino in Boston in November but they don’t review anything ahead of time.
What’s the best way to share the images? I have access on my phone and computer but it is hard to know where to stop scrolling and take a photo you all seem like experts at reading these.
My friend is a radiologist and may take a look this week! I also have the CDs from both MRIs and CTs.
Always good to check to see if IJVs are compressed between styloids and C1. Best view is the axial view. I’ve attached my own axial view of C1 to help you know what to look for. It’s the top vertebrae with a white circle in top middle. Once you upload a screenshot I’ll annotate it for you.
Both styloids appear to be a decent distance from C1 which is good.
Your right IJV is dominant (i.e., it’s larger in diameter than your left).
Left IJV (at this specific level) is not being compressed by anything. It’s just a smaller vein overall.
Right IJV has some compression against C1. Not sure if it’s causing any symptoms or not.
Now that you know which structure is what, you can follow the full length of them. For example if you keep an eye on the right IJV, you can follow it all the way to the heart to see if it becomes compressed at any point.
I suggest opening your CT imaging in Radiantviewer and constructing a 3D model. This will let us see the full lengths of your styloids (and see if the tips are touching anything important) and will allow us to see if there are any pockets of calcified stylohyoid ligament on their way to the hyoid bone.
@Katie2 in this slice, both of your IJVs are against C1. If you are experiencing intracranial hypertension symptoms, and this is the only location where your IJVs reduce in diameter (i.e., where compression is occurring), I think a C1 shave could help since C1 would be the only structure causing compression (unless there’s more compression elsewhere).
I would prioritize your right side since it’s more compressed and it’s your dominant IJV. I’d be able to comment more on you styloids if we were able to see their full lengths.
@Katie2 - Your right transverse process of C1 does look like it’s in pretty significant contact w/ your right IJV in the most recent image. Your headaches might be related to that & possibly ear pain.
I’m glad you got your contrast CT and are ready to roll now. It helps to see exactly what you’re suffering from because this condition can make you feel like you’re losing your mind without that concrete evidence. Back in 2010-11 I had so many doctors tell me nothing was wrong that I started to believe it.
I’ve been speaking with Tina and several other very nice people frequently. I was told I’d be scheduled for October up until 2 days before they gave me the January surgery date. I probably did myself no favors when I expressed my frustration. Maybe I should send an edible arrangement or something - LOL!
@Kiki67 - I’m sure you’re not the first patient to express frustration over being given a surgery date that’s much further out on the calendar than expected. I assume you asked to be put on Dr. Hackman’s cancellation list. We’ve had members who’ve been given as little as 2 days notice when there was a cancellation so have your bags packed just in case.
I am sorry that you were misled & have a longer wait than you would like. I hope your symptoms maintain some level of calm vs being constantly flared between now & then.
Yes, I asked to be on the cancellation list during the same call they gave me the 1/7 surgery date. I’ve got a credit card for a last minute plane ticket and a list of people to call on to accompany me. My concern over the delay is that I’ve been off work since July due to my voice. My company is scheduled to terminate me on December 28 when my short term disability runs out. It’s a bad time to be an older woman looking for work, especially if my voice doesn’t recover quickly. And it well may not since it’s been gradually declining for about 8 years. (Misdiagnosed as due to GERD which I don’t actually have.)
That is a frustrating & concerning situation, @Kiki67. Have you discussed doing another job for your company where you could work possibly work remotely & not need to talk? It would be nice if they’d try to accommodate you rather than just terminating you at the end of the year. I’m really sorry for your situation, too.
Yes, I’ve offered solutions. It’s an extremely large global corporation. Using the phone and speaking in meetings are essential functions. They will move me to long term disability when they terminate me so it could be worse.
I’m so sorry. I wish you could communicate your thoughts non-verbally via text/email, but I know that’s slow & not spontaneous as you may need to be at times.
you all seem like experts at reading these.
