Yesterday I met with the surgeon I was referred to at Duke in Durham, NC. I went with a list of questions and my past CT Scans. She was pretty knowledgeable on ES. She acknowledged all of the symptoms I have been having (especially vascular).
She viewed my CT scan. She showed me the bilateral ES. Although I am only symptomatic on the left side. This was an old scan from April. She measured each styoid to be about 5cm. She then examined me. When she looked into my throat at the protruding styloid, she could not believe how my previous ENT missed it. She told me that I need to have the surgery ASAP. She also recognized how serious ES is and the risks involved. That was really refreshing to hear as many doctors are dismissive.
She actually performed an ES surgery a couple of weeks ago. She even showed me what the styloid looked like after she took it out. I thought that was kind of cool. I asked her how many surgeries she has done to treat ES in total and she told me under 10. She has done 100's of other surgeries working in that location though.
She is ordering a 3D CT Scan to get an updated image and a better idea of what's going on. Surgery will be scheduled after that.
I am having an extremely difficult time functioning. I am unable to drive anywhere if it is longer than 5-10 minutes. I feel like I am going to pass out multiple times a day and my symptoms keep getting worse. I don't think I can go much longer without having the surgery. I am so happy I was able to find someone in my area.
Wow Krista - that sounds really good! I'm so glad that she understood the severity and has some experience with Eagles. I think you have reason to be hopeful.
Thank you Heide! I hope so! She did the external approach on the person a couple of weeks ago. From the picture she showed me she definitely took out the whole styloid. She is leaning more towards the intraoral approach for me because of the way my styloid is sticking in my throat. I don't know how I feel about that though. I think I may prefer the external. I feel like there is a better chance of getting the entire styloid safely. We will discuss that at my follow up next week when we review the new scan. I am kind of nervous though! Surgery in general scares me.
Wonderful news! So refreshing to find someone that understands what you’re going through and how to help! I am 2 weeks post surgery for my left side and feel better already. It was intra oral and he only removed 2.5 cm but like you mine was high up and could be felt in my throat. I do feel better already and hope you get some relief soon! Recovery is rough at first but smoother than you think and totally worth it. Keep us updated!
Thank you so much! She wants to do the intraoral approach but won’t know for sure until we get the 3d Ct Scan… which my insurance currently will NOT approve. My doctor has to speak to someone over at my insurance company next week.
Heather B said:
Wonderful news! So refreshing to find someone that understands what you’re going through and how to help! I am 2 weeks post surgery for my left side and feel better already. It was intra oral and he only removed 2.5 cm but like you mine was high up and could be felt in my throat. I do feel better already and hope you get some relief soon! Recovery is rough at first but smoother than you think and totally worth it. Keep us updated!
Have you had a Doppler of your carotid artery is like having a sonogram of a new born baby it shows all the artery s flowing cost me 250 painless your case sounds server it should nothing wrong but I also had my styloid removed already Good Luck
I have not had a doppler. I will definitely do some research and ask my doctor about that. The compression of the carotid artery is what is scaring me the most. I can’t really sleep at all. I can’t lie on my left side and now not even my right. It feels like I am being choked, severe pressure and pain in my head (more than I experience upright) and my heart starts racing. Really scary. I want to get this surgery as soon as possible. Thank you for the information I truly appreciate it!
Deleone said:
Have you had a Doppler of your carotid artery is like having a sonogram of a new born baby it shows all the artery s flowing cost me 250 painless your case sounds server it should nothing wrong but I also had my styloid removed already Good Luck
Hello Krista3, I was diagnosed this week with Eagles and am currently seeing a ENT at Duke and a Neurologist as well. Do you mind telling me the name of the Doctor that you saw? I am dealing with two great people but with limited knowledge on this particular syndrome. I have other issues that complicate this matter TN and this complicates things for me.The thing is I have to have my tonsil removed and this surgery. The kicker is all of the nerves run together in that region and could make things worse on the TN side. It would be helpful if I could find out this person's name and maybe they could provide additional input. I have this issue on the right side of my tonsil and I can feel it. It makes me nuts!!!
Hello Krista3, I was diagnosed this week with Eagles and am currently seeing a ENT at Duke and a Neurologist as well. Do you mind telling me the name of the Doctor that you saw? I am dealing with two great people but with limited knowledge on this particular syndrome. I have other issues that complicate this matter TN and this complicates things for me.The thing is I have to have my tonsil removed and this surgery. The kicker is all of the nerves run together in that region and could make things worse on the TN side. It would be helpful if I could find out this person’s name and maybe they could provide additional input. I have this issue on the right side of my tonsil and I can feel it. It makes me nuts!!!
