Hi everyone. I’ve been super busy with classes this week, but I just got home from the cardiologist and was also diagnosed with POTs. My cardiologist said he wasn’t familiar with Eagle syndrome, and I showed him my scan. He said he would look into it, but I had a classic case of POTs, which has probably been undiagnosed since I was a teen. I’ll be diving into everyone’s posts with POTs. Still, if anyone who also has POTs sees this and has any advice on managing the two together or differentiating the symptoms, I’d love any insight.
Also, the Mayo Clinic in Jacksonville that I was referred to called today to let me know they do not treat Eagles. I guess I will be calling Dr. Hackman in North Carolina. The additional tests I requested from my local ENT were denied again.
Symptoms-wise, I constantly feel pressure on my throat and clicking when I drink. I feel like I can see the left bone when I look up and to the right. I’m hoping I can get into Dr. Hackman sooner rather than later.
The cardiology appointment wasn’t wasted time which is good! I guess that’s one diagnosis down & perhaps others to go? I’m sorry your ENT isn’t being cooperative. When you call Dr. Hackman’s office & schedule your appt., ask to be put on a cancellation list. Several of our members were able to get appointments significantly sooner by doing that. When you see him, discuss any symptoms with him that you feel you’d like additional testing for, & I bet he’ll order the tests for you.
FYI - I could feel my left styloid under my jaw so there’s a good chance if you think you’re seeing yours, you are.
Hopefully no more diagnoses to go lol. But POTs does make a lot of sense for me, as much as I’m not glad to have it - I am glad I don’t actually have a panic disorder, if that makes sense. For most of my life, I’ve been told I have panic and anxiety, but I didn’t actually feel scared or sad about anything, so it didn’t make sense.
I will, I plan to call their office tomorrow and see what they need from me in order to set up an appointment. Thank you for all your guidance.
Sorry about the POTs diagnosis, but it’s good when you get validation for symptoms…hopefully others with POTs will be able to give you advice, & hope that you can get in to see Dr Hackman soon
Fyi, as of last week, i was told dr hackmans next avail appt is in January. Many people r on the cancelation list but they will gladly put u on it. I wish you all the best! We have waited 4.5 months for my son to see him for our appt mid october.
I hope your son gets on okay at his appt, let us know how it goes!
Thank u so much! Over 12 years of this agony with countless docs - its a big day for us.
Thank you for the update about Dr. Hackman’s schedule. Your son has waited a LONG time for his appt by US standards. I’m glad it’s coming up soon & I hope very much that Dr. Hackman can help him. He shouldn’t have to suffer from ES any longer!
Hi @ectocake, really sorry about your health issues and wish you all the very best with sorting out your Eagles and POTs. I’d never heard of POTs, but looked it up - and weirdly I have a big problem with very high heart rate (waiting to have a 24 hour heart monitor to see heart activity) but it sounds like I have that as it’s chronic & been going on about 18 months. My question is - is your POTs caused by the Eagle Syndrome (ES)? I’m waiting to see about my throat/neck again as pretty sure I have ES - and if the styloid is pressing against blood vessels & nerves that could be the cause of many of my issues. Has anyone suggested to you that the POTs is caused by ES? I can see you are asking for feedback on it here. Thanks for your post - all these posts are so enlightening. GOOD LUCK.
That’s good to hear. 4.5 months is shorter than I would have thought for this surgery.
There seem to be a few people in this forum that have both. Part of me hopes my POTs symptoms are from Eagles compressing the arteries and veins. My cardiovascular specialist said I have classic POTs symptoms and history. My symptoms with POTs have been going on since I was a teen but I was treated for panic disorder and anxiety. He seemed pretty confident but is sending me for more tests to confirm. I just got my heart monitor in and I’m going to hook it up this week.
That is just for an inital office appt. Idk what the surgery schedule is
Thank you. This is the initial consultation appt so we are excited to see what he says. We did get another CT scan 4 months ago and both styloids had grown. One went from 3.2-3.4 and other 3.5-4.0 in 1.5 yrs time and he is 38. As you said, they can keep growing and we really yhank you for your recommendations. Ill post after our Oct 17 appt
Thank very much. It sounds entirely possible to me (no expert, but seems an obvious likely consequence) that an elongated/wonky styloid could very easily be pressing on blood vessels and nerves in the neck causing exactly things like POTs. Really hope they get to the bottom of the issue for you. Hope you’re able to post again to say what the heart monitor shows and how you get on from now on. I’d be really interested, as I’m sure others would be too to know. Good Luck!
That’s quite an impressive growth rate!
I think once you have your initial appointment, your son will get a surgery date within a month or so afterward.
The increase in the length of his styloids in only 1.5 yrs is significant! WOW! I will say that if a different radiologist read the second scan that could account for some of the difference as there seems to be some margin of error in measuring styloid lengths.