Have you had an upper GI scope to check your esophagus & stomach lining? That would be my first suggestion. This would insure that nothing is going on in those areas that is causing the blood you’re seeing. I actually had this done before I knew I had ES because I was choking on my food & whatever I drank & thought maybe something was up w/ my esophagus. My esophagus was fine, but I had some small ulcers in my stomach (asymptomatic). It was a couple of years later that other symptoms surfaced that led to my ES diagnosis.
If all is clear in those areas, there is a very small chance that because your styloids are so long, they’re putting pressure on or have abraded some small capillary or vessel in your deeper throat area that is causing a small amount of bleeding & that is what’s coming up.
I had surgery on Monday June 28 with Dr Hackman. I had a double styloidectomy and he cut sides of neck and in front if both ears. Great patient care by everyone from preop to postop. I did have to stay overnight to be monitored and i had left eye pain but told that is normal. And I had a crooked smile and weak eye but should clear up. They removed the drains late morning the day I was discharged and I was allowed to go home. Had some issues swallowing but other than that everything seems okay and the headache I had for several months was gone when I woke up from surgery and hasn’t returned. Had my followup July 13 and I’m still getting better but after over two years of symptoms I can now turn my head again and done have a lot of symptoms. Highly recommend Dr. Hackman and the entire team at UNC at chapel hill. My Styloids were 4 and 3.5 I believe.
That is a fantastic report! I’m so glad for how much your surgery has helped you already. Healing can be a bit forward then backward but goes forward again. Patience is key. You’re doing great! In a couple of months you should feel pretty normal again but the irritated nerves may take some months longer to fully recover.
Hi Snapple2020
do you have any information about calcium imbalances and eagles syndrome? I am constantly craving calcium rich foods! I had extra teeth removed as a teenager and think eagles is connected to my body producing extra bone … possibly because of a calcium imbalance? Interesting
thank you
Asumhannah, what you have described is exactly what ES does…It took me 17 yrs. to finally get diagnosed. I went to so many physicians in Houston, TX. and none of them could diagnosed me! I went through hell during those 17 yrs. It felt like I had a bone stuck on my left side and then, I started to get the same sensation on my right side.
I went to dentists, ENT doctors and nobody was coming up with the correct diagnosis. Allot of praying, crying, begging God to help me…Then, one day two ladies came to my door and told me I was going to move…Long story short, I did move to Yukon, OK. and it is there that I went to Dr, Greg Krempl at OU Physicians. He diagnosed me with ES and a week later, one of his professor/colleague, Dr. R. Layton Runkle did the surgery. It was the surgery from hell. It took ME at least 3 months to recover because I am an insulin dependent diabetic.
It was a painful, long process for me but, I took it one day at a time and I had some praying friends who helped me get through it. My support system was my husband but, he had to work to support me and our two sons…,I was lucky. Dr. Runkle went through my mouth and cut out calcified styloid on both sides and he removed my tonsils at the same time. I still see Dr. Krempl once a year to make sure everything is fine.
I am doing well and I have not had any symptoms of ES at all. My advice to you is, have the surgery. Why prolong your pain and misery. You are halfway there…At least you have already been diagnosed and that’s half the battle. Praying that it all goes well for you and your recovery will go smoothly.,
I could see your styloid at various points in the video images where your head is in profile. I don’t have the training to read the CT slices from the top of the head down. Your profile photos aren’t at an angle where I can see the styloids or the hyoid bone. I’ll send you one of my 3D images so you can see what is easy for us to read. An image like mine can be made using a 3D slicer program such as this one:
I just saw these responses I’m so sorry! I’ve been super busy studying for my actuarial exam on the 24th!
So I’ve got my appointment with Dr.Heckler this Monday, what should I expect, should I bring anything? I am determined to get these out and THIS YEAR.
Wish me luck all.
If you’ve got copies of scans or reports I’d bring them. There are some questions that you should go prepared to ask if you’re considering surgery with Dr Heckler:
How many surgeries have they done?
What were the outcomes?
Is surgery intra-oral or external? (External is better as it gives the surgeon better visibility, more of the styloid can be removed & there’s less risk of infection, but members have had successful intra-oral surgeries)
How much of the SP will be removed? (as much as possible back to skull base is best)
Will all the pieces be removed & will the tip be smoothed?
Will the nerves be monitored during surgery?
And are there any steroids prescribed for swelling- not everyone does, it can help, you’ll need to ice & sleep semi-upright anyway.
I hope your exam goes well, & also your appt on Monday. Let us know how you get on!
Hey @Jules, so after seeing Dr. Heckler today he confirmed my Eagle Syndrome and said that I do need surgery. He would want to do the surgery intra-orally, he also told me that he is good friends with Dr. Hackman and that Dr. Hackman would likely also want to do the surgery intra-orally and with robotics equipment and remove my tonsils as well. Dr. Heckler suggested that I actually get the surgery done by Dr. Hackman because he has more experience with the surgery as well and training with the robotic surgical equipment.
In this scan its cool cause I can see the sort of “slice” where the styloid becomes calcified and then continues all the way down to the hyoid bone on both sides.
I’ve got my consult with Dr. Hackman on September 30th but I’m gonna call tomorrow and see if any earlier could happen because my main issue is that I want to get the surgery done this year before my premium resets…
Nice images. I’m glad they made what’s going on in your neck clear for you. It always helps to be able to visualize the “invisible”.
Asking Dr. Hackman’s ofc to put you on their cancellation list is a good idea. Snapple2020 has also suggested calling the office of interest every morning to ask about cancellations for that day as sometimes people will cancel last minute & there isn’t time to get someone on the waitlist to come in.
Dr. Hackman does both external & intraoral surgeries. It would be a good idea to discuss both approaches with him & hear his opinion of the pros & cons of each. More of our members have had him do the external approach, but we do have a couple of members who’ve had the intraoral robotic surgery which has been successful. I applaud Dr. Heckler for referring you to a doctor w/ more experience even when it’s a surgery he does. That speaks well of his personal integrity.
This is my first post but I’ve messaged with @Isaiah_40_31 before.
Just wanted to say my first appointment with Dr Hackman is Sept 9th, he has already reviewed my CT scan and is willing to save me. I’m traveling from Fort Worth, TX!
Yay Birdman!!
I am excited for my first appointment with him as well!
I am excited for the relief I will feel after! Do you know if he wants to do external or orally?
Oh it’s going to be wonderful once this is all wrapped up for us!
Unfortunately I have no idea which route he wants to utilize. NC has some sort of restriction with tele-visits for out of state patients so meeting him face to face in Sept will be my first conversation with him directly.
If it makes sense for Dr Hackman and with the insurance company, I think I would prefer his intraoral robot procedure.
That’s super good news, Birdman!! I’m so glad you’ve made your decision & have an appointment. Please let us know what you learn after seeing Dr. Hackman & tell us your surgery date. He is an excellent surgeon. I expect you’ll feel a lot better once your styloid is gone.
how is your eye and mouth? I am 10 days post op very little improvements. tiny ones, but little. my eye is constantly bothering me but is now mostly going back into focus when I force blink, whereas I couldn’t do anything to get it into focus at first.
I’m so glad for how much your surgery has helped you already. Healing can be a bit forward then backward but goes forward again. Patience is key. You’re doing great! In a couple of months you should feel pretty normal again but the irritated nerves may take some months longer to fully recover.
