I just got the results back from my CT angio/venogram. I don’t physically have them yet since I went over them with my doctor who ordered them in a televisit but he’s going to mail me the disc soon. I have images from my CT myelogram from last year on here first, which is where my doctor was looking to see if I had a CSF leak noticed that my styloids were both elongated, and that my symptoms fit more with ES. The last image is the only one I have so far of the 3D images from the angio/venogram I did this week. I’ll try and post more when I get the imaging myself, but wondered if anyone has any initial thoughts?
My other question is about nerves… Is it true that no imaging can show if there is any nerve impingement? Do they not know what’s going on with your adjacent cranial nerves until they actually get in there to do your surgery? Or is there additional imaging that can be done to see how the styloids are affecting the nerves in addition to these images which only seem to show the interaction with the ICA and IJV?
Thanks in advance for any insight anyone can offer!
Wow, those styloids are long & spikey! The only imaging which can show nerves is a FIESTA MRI- I know people have had it to show Trigeminal Neuralgia but not heard of anyone having it to see which nerves are affected by the styloids- & not many places do this. The best way I think for you to work out which nerves are affected is by symptoms- there’s info about the different nerves in the Newbies Guide Section or you can watch 2 minute neuroscience tutorials on YouTube.
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
@Jules1 Thanks for the advice and extra info! I also just got another report back from my doctor that apparently wasn’t included in the imaging yesterday for some reason. So it looks like there’s some compression on the right IJV. Interestingly, while I do have double sided symptoms, my symptoms on the left side of my body are 20x worse than on the right. But it’s the right styloid that is more elongated and compressing the IJV. Is this common for people to have symptoms on the opposite side? Or is it equally likely that there are some compressed nerves on the left given that I have the majority of ES and nerve compression symptoms I’ve seen listed? I’m assuming I’ll need both elongated styloids to come out. Below is a list of my symptoms, which seem to fit with a lot of different compression types…
- Headaches/migraines and what feels like intracranial hypotension
- Brain fog
- Eye pain and pressure, and intermittent blurry vision
- Tinnitus, pulsatile tinnitus, and hearing loss (worse in right ear)
- Sore throat, especially when talking
- Intense earaches that feel like ear infections (both sides but worse on the left)
- Crackling and popping in the ear and jaw
- TMJ (worse on the left)
- Dysphagia/ Odynophagia
- Lateral neck and oropharyngeal pain made worse by head and tongue movements; with speaking, swallowing, chewing, yawning, head turning and other oral and cervical movements.
- What seems like thoracic outlet syndrome on the left side in particular
- Facial and sinus pain
- Pain in mouth (gums and tongue)
- Vocal changes (hoarseness from talking “too much”)
- Arm and hand numbness and tingling (worse on the left)
- Dysautonmia: dizziness, heart palpitations, POTS
- Pressure in head/ears
- Limited movement in left shoulder and neck (can’t turn my head to the left without intense increased pain)
- Muscle spasms and tingling nerve pain
- G.I. problems
Wow, sounds like you’ve got the works @Melodious21 ! Lots of nerve related symptoms & ones which are common with jugular compression…some members have had cross-over symptoms, but it’s also common for people to notice after surgery on one side that the symptoms either ramp up on the other side or maybe just become more noticeable. It’s not always the longest side which causes symptoms, it can be that the other one is more angled so irritates nerves, or wider.
I must say that I disagree w/ Dr. Siker’s conclusion that 50% occlusion of the IJVs is not significant enough to cause symptoms like IH. He must not have reviewed scans for very many ES patients w/ IJV compression. We have members who’ve had less compression than that who had symptoms from IJV compression. Every human body is different & thus responds to the stresses imposed differently. In your case having both IJV 50% occluded is obviously causing significant symptoms.
From your list, it looks like your accessory nerve, trigeminal & facial nerves, vagus nerve, glossopharyngeal & hypoglossal nerves are all being irritated by your styloids.
@Isaiah_40_31 I appreciate you saying that. I was also feeling like Dr. Siker was minimizing the significance of the compression in regards to my symptoms. I doubt he’s seen a lot of ES cases, especially since he entirely missed it initially when he did the CT myelogram looking for a CSF leak. My doctor who ordered the imaging was the one who noticed it and he’s a chiropractor. And thank you for your insight into which nerves are likely being affected based on my symptoms.
I serendipitously got a phone call when I pulled into Dr. Siker’s parking lot for my CT appointment from Dr. Joshua Schindler’s office at OHSU, who apparently has experience dealing with vascular ES. They’d received my referral with the myelogram images and told me to send these recent images to them and then they’ll do a medical review and call me back about scheduling. I also got a referral sent with all my imaging to Dr. Hepworth’s office too based on your recommendation. I definitely don’t want to put all my eggs in one basket with Dr. Schindler if he doesn’t end up being the best option for me. It sounds like Dr. Hepworth would be the ideal option minus the traveling part of it, but I’ll have to wait and see how it all pans out.
You are wise to get more than one opinion, @Melodious21. ES surgery is serious & not something you want to have to repeat if it isn’t done correctly the first time. Not only that, but finding a doctor who’s surgical strategy & personality (secondary) are a fit for you is also important. I saw two different doctors - the one who diagnosed me & wanted to do my surgery, & my second opinion doctor who had a superior surgical strategy & thus was my surgical choice.
@Melodious21 I had most of those symptoms. Most of them are gone after surgery. I’m only about 3 months post op and still have a lot of swelling. My tinnitus didn’t go away unfortunately. As soon as I woke up from surgery I turned my head and had no pain. It was amazing! I couldn’t turn my head before surgery without pain. I still have brain fog sometimes (IJV compression) and when I’m stressed the neck pain comes back a bit (nowhere near before surgery) but again, I’m only 3 months post op. As my swelling goes down more symptoms will go away or get better.
I hope that helps!
@Danielle1 that is such a relief to hear! Thank you for sharing that with me! My biggest concern with all of this is how my EDS will affect the healing process since I notoriously don’t heal well from even minor procedures but I’m hoping it will work out with Dr. Hepworth since he seems to be the guy to see for my situation. Wishing you well with the rest of your healing! I’m so happy to hear you’re feeling so much better!
@Jules @Isaiah_40_31 @Danielle1
I got a call back from the local surgeon’s office here: Dr. Joshua Schindler at the Oregon Health and Science University hospital. He is on the ES doctor’s list. They scheduled me for an endoscopy next week but didn’t give me any other information yet. Is that a usual test they’ll do? I tried to search for it on the forum but kept just finding endoscopic surgery instead…Also, how soon after having my referral sent to Dr. Hepworth should I call their office to check that they received it?
Can’t help you with the question about Dr Hepworth’s office, hopefully someone who’s seen him can comment on that.
Alot of members have had an endoscopy to rule out reflux causing symptoms so that might be why, although it has no use for diagnosing ES!
@Jules I was worried it had no use for diagnosing ES. It’s just annoying because I’ve done at least three of them in the past with a different ENT, who ended up doing my sinus surgery that was probably completely unnecessary. That was in 2018 though and every doctor I see seems to want to do their own tests, so I’m sure they’ll make me go through with this one again either way. Oh well, at least I got a foot in the door with the one surgeon here who could possibly do my ES surgery!
The hoops we have to go through unfortunately!
@Melodious21 - I had an endoscopy because I began choking on food when I ate. This was prior to the start of the symptoms that pointed to ES. I think my choking problem was an early ES symptom. My endoscopy was to examine my esophagus & it was perfect so the test wasn’t helpful. The symptoms that led to an ES diagnosis didn’t appear until 2-3 yrs later. It definitely can a progressive illness.
If your referral was sent electronically (which I expect it was), they should have gotten it the same day. I would check on it w/in a week of the time it was sent to make sure they received it. Even email isn’t fully reliable about getting to its destination.
@Isaiah_40_31 thanks for the clarification on the endoscopy. I mostly just feel annoyed because it’s obvious from my imaging that was sent to OHSU and my referrals from two separate doctors saying they think I have ES, why I’m going there. I just feel a little like they’re wasting my time. The other frustrating thing is that they scheduled me with a different doctor even though my referral was specifically for Dr. Schindler because he’s on the ES doctors list. I called their office today to ask why they’re doing an endoscopy since I know it isn’t a test that confirms ES and I’ve already had three done in the past with a different ENT. I offered to have those records sent over. I also asked why I was scheduled with Dr. Paul Flint since I was referred to Dr. Schindler because of his ES experience. They told me that Dr. Flint trained Dr. Schindler, but I don’t yet know if that means he’s familiar with ES since I’ve never heard of him. They said they’ll probably want to do their own endoscopy since doctors like to preform their own tests but they couldn’t tell me why it needs to be done or what the next steps will be in getting an official ES diagnosis and talking about surgical options. They did say they would have a medical assistant or nurse call me back to go over all of this, so we’ll see what they have to say. As far as Dr. Hep goes, I did call their office yesterday but no one answered so I left a message letting them know I’d like to make sure they received my referral and what the next steps are. I believe I’ve read on here that it can be hard to get in touch with them initially so I guess I’ll keep calling if I don’t hear back soon.
I hope that you hear soon from Dr Schindler’s office to clarify the process, & that you hear from Dr H’s office as well!
Good self advocacy, @Melodious21!! I’m glad you followed up w/ Dr. Schindler’s ofc to get an understanding of why they’re requesting an endoscopy (persist in resisting having another one unless they have a good reason for wanting a more current one) & why they scheduled you w/ a different doctor. Frustrating that they didn’t honor your request to see Dr. Schindler. You’re also correct to question whether or not Dr. Flint has ES experience as Dr. Schindler could have picked that up on his own after his mentorship w/ Dr. Flint. I saw Dr. Samji (not a Stanford doc) in CA. His mentor, Dr. Damrose, works at Stanford. Dr. Damrose does to ES surgeries but is much pickier about whom he will operate on than Dr. Samji. Both are good ES surgeons though. Unfortunately, I don’t believe either one deals w/ vascular ES.
Yes, do be persistent w/ Dr. Hep’s ofc. They’re understaffed so can be slow to call back. Maybe next time you try to reach them, you’ll get a human voice on the other end rather than vm.
I also hope you hear back from both offices soon.
It’s been a while since I was able to be on here and catch up. I was given the opportunity to visit my family so I took it. After the disappointing appointment I had at OHSU, it was good to get away and take my mind off of things for a bit…
So it turned out that they scheduled me with Dr. Flint at OHSU instead of Dr. Schindler because Dr. Flint supposedly trained Dr. Schindler and knows just as much about ES. They didn’t really explain the endoscopy more than that they always do that as a first step. All they found from that was that my tonsils are a little enlarged.
Frustratingly, Dr. Flint was rather dismissive of my symptoms and the possibility that they’re related to ES. Instead he seemed to want to blame them on my other conditions like hEDS, MCAS and the possible CSF leak I spent all of last year trying to treat, without any relief or even proof of a leak. I had a list of my symptoms that are much more specific to ES, he had the imaging that showed that both of my styloids are elongated and that my IJV is being compressed. He said he doesn’t think that my styloid is compressing my IJV, but instead it’s my transverse process that’s compressing it, however, he did not explain what that means. He asked me a lot of silly questions about what things I’ve already tried, like, “Have you tried acupuncture before?” As if I never would have thought to try acupuncture in the 25 years that I’ve been experiencing headaches and worsening ES symptoms.
Luckily I had brought a friend with me who is a medical student and works as a researcher at OHSU, She also has all of my conditions except ES. When he was being very dismissive she chimed in and said that she has all of the same conditions that I do except ES, and doesn’t have the ES related symptoms I have. He seemed to listen a little more after that I suppose. But he told me that having my styloids removed is extremely dangerous and doesn’t even relieve the symptoms most of the time, but that he’ll confer with the doctor I was originally referred to and get back to me. This was on April 6th, and I have yet to hear anything back from their office.
On a more positive note, I did get an appointment with Allison Love in Denver on June 30th and a televisit scheduled with Dr. Hepworth on August 10th. They also said they’d let me know if they get any cancellations before then. It would have been nice to find a good local option, but I feel better knowing that Dr. Hepworth and his team are probably the best option for me, which makes the visit to Denver totally worth it.
I’m so glad you were able to get away for a bit & think about happier things than ES. Very unfortunate info about Dr. Flint. Nice that he trained Dr. Schindler but it doesn’t sound like he himself knows much about ES. You were wise to bring a friend w/ you who has medical experience. I’m so glad she did what she could to advocate for you, but still so sad for Dr. Flint to have been dismissive.
What great news that you have appts. w/ Alison L. & Dr. Hepworth. I hope you get to fill a cancellation spot that’s significantly earlier than 6/30 & 8/10 so the ball can get rolling sooner. Dr. Hepworth is an exceedingly busy doctor not just doing surgery but also sitting on discussion panels & working w/ other vascular & neurosurgeons in perfecting surgical techniques for ES & other types of surgeries that can have vascular components.
So frustrating for you, but good that you had your friend with you for support! I’m glad that you have appts lined up with Dr H, I hope that you do get a cancellation!