Today I found out the Neurosurgeon the hospital referred me to has accepted my case. Its a huge relief considering for years I have been unable to find a local specialist to treat me. I am still waiting on scheduling, but i finally feel hopeful for the first time in a long time. Last week I ended up in the hospital with what looked like a TIA. They said they don’t see evidence of a stroke, arteries, heart are all good , but the Neurologist agreed that something got impingement due to the elongated styloid process. I have a mountain of symptoms just like most of yours. I have a had a diagnosis for years but have been unable to get help or anyone in my family to take me seriously until now. It’s really depressing living with a rare and invisible illness. Finally after ending up in the hospital my Husband and mom decided to do the research and realize what i have been going through. I cannot wait to have my life back. It’s really frustrating being told how healthy you are when you feel like you are dying every single day. I will keep you updated and hopefully with a surgery date.
Since you have a CT I highly recommend putting it through a program like Radiant in order to get pics that anyone can understand. I am so tired of the medical gaslighting but now I am armed with pics that they will have to explain to me anytime anyone wants to claim there is no issue. I am going to use them to try to get a transcranial doppler and a Fiesta MRI.
Good luck with your journey. It’s a battle.
Yes! I am going to ask them to make it 3D. This doctor reviews cases beforehand to decide if he will take them, so i am hoping that he is already seeing outside the box. Thank you! I will keep y’all updated.
Just so you know I asked for my CTA to be done with 3d rendering. They had to send it out. What came back was not what you see here like with Radiant. I have no idea how it was considered 3d but not what I expected. I can’t deal with Slicer so am relying on Radiant to be close enough to reality.
FYI - For Mac users we recommend the Bee Dicom Viewer App. Radiant is best for PCs.
I’m glad that the Neuro has accepted you as a patient- that must’ve been scary having the TIA symptoms! Very hard for you to have been suffering so long without help, I’m glad that your family have finally researched ES & believe you.
There’s lots of info in the Newbies Guide Section about surgery & suggested questions you can ask your doctor to make sure you get the best outcome from the surgery, here’s alink:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hope that you hear soon & don’t need any more trips to the ER 
I had my appointment with neurosurgeon today… as we all know… it came with disappointment. He said that my styloid processes are sitting about 1cm from my carotids in the neautral head position. He says he wouldn’t perform a surgery on me unless it was emergent ( i.e. if tje processes were right on the arteries) He was slightly dismissive of some of my neurological symptoms, saying he wasn’t sure that Eagle’s was the cause of all my strange symptoms (no surprise there) . He said that he’s only assisted in this surgery while an attending and that the surgery is too risky for him to do when i am not actively having a carotid occlusion or dissection. What I am hearing is “just deal with it”. He says there’s no one in Houston to help so now he is looking for someone for me in Dallas. He did prescribe some Lyrica for nerve pain, so I guess that’s something. He says he will get back with me in a couple of days with referalls to a Dr. in Dallas
I will show you a comparison. My report said there was a thin fat plane between styloid and carotid. No measurement was given. Before the report, a neurovascular surgeon in Indiana looked at the CTA and said he saw no problem. When I asked if there was risk for dissection he said no. Keep in mind this was done in the neutral position. I was standing behind him when we were looking at the CTA and kept thinking - does this guy even know what he is looking at 
Here is the image with Radiant
I completely reject what that surgeon said and continue to pursue the matter. Maybe my Doctor is right. After all you have to be an elite Surgeon to be a neurovascular surgeon. However, this patient feels strongly that he is wrong.
@Swent39 - A 1 cm space between styloid & carotid is not significant. Just turning your head in a particular direction could bring your styloid in contact w/ the carotid & cause a TIA or other stroke-like symptoms. That’s to say, I agree w/ @JugularEagle & don’t agree with what the neurosurgeon told you.
Here are doctors from our list, one in Fort Sam Houston (not sure where that is) & a couple from Dallas you can contact yourself:
•Dr. David Hayes, SAMCC (Brooke Army Medical Center), 3851 Roger Brooke Dr # 3600, Fort Sam Houston, (210) 916-6874
•Dr Teresa Chan-Leveno, University Of Texas Southwestern Medicine Centre, Dallas 214- 645- 8898 (Otolaryngologist) https://utswmed.org/doctors/teresa-chan-leveno/
•Dr Lawrence Weprin, Dallas (Otolaryngologist) http://www.entnorthtexas.com/Pages/DocView.aspx?ProvID=10977
We have one surgeon listed for Houston but there’s a note he only does intraoral ES surgery. You could try contacting his office for a consult though.
•Dr Ron Karni, UT Physicians, Memorial Hermann Surgery Center, Houston (Does intraoral surgery)
Hi there! Thank you so much for the list. I saw Dr. Karni a few years back and he did offer to do intra-oral approach and leave my tonsil, which i didn’t feel too comfortable about considering what I’ve heard from others on forum. My original CT disc was unopenable and they couldn’t look at it so I didnt want him going in blind. He was also pretty dismissive. From my experience, doctors seem to think “just dealing with it” is the route to go if it isn’t clearly right on top of the carotid. The Neurosurgeon was going to compile a list of specialist in Dallas. Thanks for the head start on that. I started the Lyrica last night and i do feel less pain today. The only problem is that I already feel foggy, and it makes that a little worse… but hopefully i continue to at least have some pain relief while continuing on this journey for answers and help. Thanks for all of your support in a world where I feel like no one understands.
Can i do radiant on my own at home? I disappointedly did not get to see 3d imaging as I hoped
As I indicated in an above post I am not sure what their 3d version is. Mine was 3D in some kind of way but I couldn’t recognize it. I was really disappointed. I expected the beautiful 3d like pics made by Radiant that I saw on this site.
If you don’t have a Mac you can download Radiant. Very easy to use. If you are computer literate or have the patience (Which I don’t) you can use Slicer associated with The National Institute of Health. Slicer might be more accurate. I have no idea. Harder to use.
Once you download Radiant you can navigate it. Use all the different settings. Black and white, etc.
Also, I had wanted to do what this article is talking about as far as predicting rotation. They note two programs. I don’t see a way to do it on Radiant.
If anyone has a clue maybe they can weigh in. It seems Blender is the one that does it but can it work off Radiant files. I am completely clueless about Blender. Will have to look further. If some computer wiz wants to try Blender with Radiant files to see if it works I know some of us might be really grateful.
So upon further review, Radiant can be exported to .stl files as per Radiant"
“3D models created in RadiAnt can be exported to STL files, which can be opened in alternative 3D modeling software and used for 3D printing”
Edit again: I just followed Radiant instructions and it was pretty easy. Now I am off to see if I can figure out Blender
@Swent39 - Dr. Chan-Leveno is the doctor we hear about most often from our TX members. I’d start with her. She is very experienced with ES surgery & seems to provide good outcomes for her patients.
Hi, could you please tell me where is that hospital? I have got a reply that Dr. O’ Connell does not accept out of Alberta patients due to some restrictions. So sad for me as I could fly to Edmonton and have surgery. I have 2 good friends living here in case I need to stay.
The doctors listed in this discussion are all in the state of Texas in the U.S.
I’m sorry Dr. O’Connell won’t operate on out of province patients. That’s a shame. We’ve heard from a number of our CA members it’s difficult for them to see any type of doctor in a different province even if there is no one in the specialty they need in their own province.
I recommend you try to get a referral to Dr. Viallet who is in your province.
I hope it would be that doctor.
If not I am thinking of going to Denver.
I could go to Kazakhstan where I was born but not sure. My husband says if they make a mistake or any complications would come the doctors here would not able to help me. So my options are Canada or America.
@Luba - Please let us know if you are able to be referred to Dr. Viallet by your doctor when you have your appointment this week.
yes, I will keep you updated. My phone appointment is on Nov. 21st. But I had already been refered by Dr. Thess ( our very good ENT doctor from Portage-La-Prairie clinic. He has seen my thyroid and the XRay of ES and sent a referal to Winnipeg Health Science Center. I just do not know for how long I should be waiting and what is the name of the Head and Neck doctor he refered me to.
Please anyone direct me to the post named " Neurosergeon accepted my case". I lost it somehow. Thank you in advance.
Has anyone done the surgery with Dr. Vialett from Winnipeg?