You are the smartest group concerning ES, so I need your advice.
I had known for 8 years that I had ES. The pain became worse after having ACDF surgery in Nov 2021. I had 3 disc replaced C4-C7, plate, and screws installed. Since the ACDF surgery I have felt like I could not breathe when I bend over and a lot of ES symptoms and the carotid was pressed.
I had my right styloid (8.2 cm) removed to the skull, in May 2022 and that helped most of the symptoms. I had the left styloid (6 cm) removed Aug. 2023. I am still having problems when I bend over. I feel like my throat is being squeezed and it is hard to get a breath. My heart rate goes up and oxygen level goes down. Ears feel full and then pressure in my head. I have been to many doctors and everyone would say “I don’t know why you feel like this”. I finally found a vascular doctor that is trying to help. Every doctor in the past would always tell me your test is normal, and I would say “because I am not bending over during the test”. They finally did an ultrasound of my neck with me bending over. The tech would let me up to breathe. It showed my right and left interior cardioid blood flow decreases to less than half when I bend over and my left IJV blood flow runs backward at one point. I now have proof that I am not crazy.
The doctors are confused and don’t know what this is or how to correct it. I am having CTs and echo (hoping to be bent over for echo) next.
My question is: What is my problem? What test do I need? I am hoping someone has some experience with this problem. I just want it corrected. You bend down more than you think, and not being able to breathe is difficult. It has been 1 1/2 years since I could breathe when bending over. Thanks for your help and advice.
@Cody - The best advice I can offer you is to either post images from your upcoming CT scan(s) on our forum for opinions or send a PM to @KoolDude w/ the images. He’s been our super hero when it comes to finding minutia in CT scans that could be significant & which radiologists & doctors miss when they read the scans. There is a site where you can upload them & your personal info is deleted so no one on the forum can see it. I can’t think of what it’s called at the moment, but someone who remembers will likely tell what it is.
It would be interesting to see the scans- I think on here some members might’ve had similar symptoms when the hyoid bone processes are enlarged? The styloids can enlarge themselves, and the stylo-hyoid ligaments can calcify, plus also the sylo-hyoid ligaments can calcify from the hyoid end upwards- I don’t know what exactly you had removed, but it could be there’s a problem with the calcification from the hyoid end. Have a read up of hyoid bone syndrome & see if any symptoms correlate?
Thank you for the information. I have several tests in the next two weeks.
I suffer from similar stuff when bending over, but I still have my styloids. Waiting to get a CTA next week. If you get any answers please update
I wanted to say thank you to KoolDude. I am very grateful that he took the time to review my CTs and gave me a detailed suggestion of his findings. He was willing to share his knowledge and he is very talented. Thank You again.
I took his findings to the doctor, and she agrees with him. She is passing this info on to her team and hopefully I am getting closer to the solutionto the problem. I was so happy that the doctor did not disregard and was willing to listen, which is so rare. None of the KoolDude results were listed on the original CT report.
I know if you are reading this, you are wondering what it stated. He thinks the carotid sheath was moved during my ACDF surgery (5 months before ES surgery) and is out of place. It is being pressed when I bend over and then I cannot breathe. The plate from the ACDF surgery is also not straight. We will see if this is a possible cause, but it is a likely reason.
Thank you for this site and the info that we can share to help one another.
I hope you can get this sorted out, & very pleased that your doctors listened! We’re very lucky to have members who’ve studied all of this & can help with suggestions, many thanks to them
In case you are wondering why I think the left carotid sheath was somehow moved, it is because I compared it with 2014 CT which showed that the Carotid Sheaths on both sides were aligned in the same area of the scan. This leads me to believe that the surgery or the plate is responsible for the displacement of the right Carotid sheath. The plate is also not straight. So it remains to be seen.
Yes, we will see. It is still under review with the doctor, so no new information. Is it right or left carotid out of place? Do you think the hyoid bone is touching anything? It is not level and it looks like it is against the plate? But I am not good at reading CT like you.
Thanks again for your help,
Sorry I made typo it was the left carotid sheath. No, I did not find hyoid involvement in your case.
Please note that the ACDF plate is frequently put diagonally during this type of surgery, sometimes intentionally I’d guess.