Hello to All! What a blessing to have a community to turn to for support and advice. I’m new to ES diagnosis but have been dealing with the symptoms off and on for years. I have neck/head/ mouth pain, balance issues, ear pain, tinnitus, hesitation swallowing, heart palpitations, fatique, and most recently I drool for no reason. I have bilateral elongation but symptoms are only on the left side. I have seen ENT, they treated me for nerve inflammation with oral and injectable steroids. The only symptom resolution was mouth pain and three weeks later it has returned. The ENT did not seem concerned about ES, I return in about 2 weeks for follow up and as I’ve already been dealing with this for several years I’m feeling discouraged. I would appreciate any advice on how to advocate for myself to doctors that seem dismissive. Thank you all in advance!
Angela
Welcome Angela! Thank goodness for your dentist. My strong advise would be to switch to doctor who is not dismissive if this is permitted under your insurance plan. You will find a list of doctors with ES experience on this list if you search for “doctor list.” I wish you a very quick journey towards a successful treatment.
Thank you so much for letting me know about dr list.
Hi Angela & welcome to the site!
I’ve sent you a private message with info about the site, & with a link to the doctors list onelessstyloid mentioned. We usually suggest that you could take a copy of research papers with you, there’s links in the Newbies Guide section, that mention symptoms & how successful surgery can be if you need to convince your ENT to treat you, but equally because the surgery can have risks, we advise people to see a doctor with experience. So it might pay you to look at the list & consider a second opinion. It is possible to get good results from surgery, so keep strong, & keep hopeful!
Thanks for great information. I’m not happy that anyone has to deal with this but grateful that there are people who understand. I will definitely utilize research and Dr list provided. Wishing you well!
Hi Angela,
Welcome to this amazing forum! I know you will find the support & information you need here. Though we are not doctors, there is a wealth of experiential knowledge about “all things ES”. Ask us anything! We are here for you.
Thanks for encouragement! I’ve been reading through different posts trying to gain more insight on navigating this journey, wondering what the average recovery time is for each surgical approach?
External surgery generally takes about 2 weeks for basic recovery i.e. you can go back to work (part time is recommended for at least the first week) or if you don’t work, you can start up some of your regular activities again. The big key here is to listen to your body. Your energy level/endurance will be low for 6-8 weeks post op.
Intraoral surgery has a slower recovery from what I’ve read here - usually 3 weeks w/ energy returning 6-8 weeks post op.
Click on the magnifying glass icon & type “what to expect”. Many discussions will come up w/ pre- & post- op information.
Angela,
Your story is literally identical to mine. When the ENT told me he would not do the surgery because he didn’t think my symptoms were caused by the eagles I literally broke down and begged him. He finally agreed to do one side and it was amazing he himself was surprised by the amount of relief and agreed to remove the other side. I felt as if I got my life back it was and is amazing that 2 small bones can cause such misery. Stay strong and advocate for yourself.
Kim
Kim,
I’m so happy you were able to get your ENT to do surgery and feel so much better, that is truly wonderful! I saw my primary care physician yesterday, he is not very familiar with ES but he honestly listened to me and looked at some images from my CT scan, gave me Gabapentin to start working on nerve pain and he set me up for MRI in a few weeks. Fingers crossed they see enough evidence to do surgery. I truly appreciate your encouragement and it helps so much knowing I’m not alone!
Hi Angela,
Just a thought (that will save you time & $$) ~ An MRI is not necessary to provide further evidence of surgical need. Your CT scan should be sufficient for that. Any doctor w/ ES knowledge will rely on a CT scan over an MRI because it’s not necessary to see all the soft tissues. A CT w/ contrast will show if there is vascular constriction, but your head will need to be in the “provocative position” i.e. the position that causes symptoms, for the constriction to show. It will also be visible on an MRI but the same rule applies regarding head position.
Hi Isaiah,
Thanks for the great info. Unfortunately the CT scan that I have was taken at the Dental office where I work and it’s a cone beam CT w/o contrast so my Doctor would like an MRI b/c he also wants to check soft tissue. Thankfully I didn’t incur any expense for CT so I will only have cost of MRI. I’m very appreciative of your advice on being in the provocative position, I was definitely not aware of this and will let the technician know this before imaging begins. You are so kind and knowledgeable, I can’t begin to thank you for helping me navigate this journey.
Angela
Angela,
I just saw Dr. Samji a few days ago and had MRI w and w/o contrast, Cone Beam as well as CT Scan w/o contrast in hand when I arrived. He pretty much felt the Cone Beam was useless for his purposes and did not even review the disk. It is not the same as a regular CT scan. We had a specific discussion about CT with contrast which he usually doesn’t do. Generally the thought is the contrast can mask seeing the bony structures and harder to read. I understand wanting to see soft tissue w MRI but a CT Scan w/o contrast is the only thing that will accurately show the styloid process and calcified ligaments to the degree needed for an Eagles diagnosis. Recent peer reviewed publications support this approach. Hope that helps.
Thank you, I guess I should talk to my Doctor again before any more imaging. The cone beam CT scan that I have very clearly shows the calcified ligaments and he looked at that and determined that he wanted MRI to see if there is any nerve or vascular compression, and also to check soft tissue. Does this sound like the right decision? I appreciate any guidance from those more experienced than myself. Also wanted to comment that I’m 3 days into Gabapentin and I’m starting to have relief of some symptoms.
You’re most welcome, Angela! Glad I gave you helpful information. I hope your MRI shows everything needed to argue your ES case. I’ll say a prayer to that end.
Hi Angela,
I think a CT scan w/ contrast would be preferable but an MRI will do the job & won’t expose you to the radiation that a CT scan will. Perhaps that’s part of your doctor’s reasoning in recommending the MRI. It might be worth asking what the difference is as far as what can be seen before you schedule an appt for one or the other.
My cone beam (done in 2016) showed the calcified ligaments as well but were ignored by oral health radiologist and never mentioned them. I had MRI in 2016 (w/ contrast) and 2018 that showed nothing. I just had them re-review Cone Beam recently (after neurologist suggested Eagles evaluation) that shows the calcifications and used it to support my PCP ordering a CT scan along w this article below. There is no standard MRI or CT that reads nerves.
Check out this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6218696/
This is pretty technical paper (2018) but key points indicate CT is best diagnostic tool for ES:
“Clinically suspected cases of ES should be studied directly with CT scans, without conventional radiographs, in order to decrease the time to diagnosis of ES. 3D-CT allows SP length and angulation to be measured and the relationship with nearby anatomical structures to be evaluated. CT scans should be performed with intravenous contrast medium administration in order to evaluate the relationship between the elongated SPs and the neck vessels to assess possible vascular compression.”
Thank you so much, I will use this information when I talk to my PCP. The article is fantastic thanks for sending link. I can not thank you all enough, I am constantly looking for info online but it does not compare to the knowledge that comes from everyone’s personal experiences. Wishing you all well!