Hello everyone! So I had my tonsils out when I was 4. I was in a car accident when I was 12 where I hit the windshield.
I’ve had jaw pain, headaches, shoulder pain, right ear pain essentially just pain radiating up and down that whole area, difficulty turning my head at different times, and migraines since I was a child. I’m 37 now and started getting tinnitus and starting a couple months ago trouble swallowing.
I was dx’d with pots also.
I messaged Dr Nakaji and they had me get a cvt but Iits normal? What steps would you take next?
I’ve been to pt for my neck and shoulders multiple times. I’ve been to tmj specialists and multiple mouthguards made that always make it worse. I’ve had multiple injections in my jaw that didn’t help. I currently get nerve blocks I think alongside Botox for migraines.
Any help or advice would be greatly appreciated. I live in the Phoenix area.
“Normal ct venogram of the head.
Mucosal thickening and retention cyst in the right maxillary sinus.
Bilateral opacification of the stylohyoid ligaments extending almost to the hyoid bone. This would correspond with the history of Eagle Syndrome.”
I’d strongly recommend getting another opinion. Nakaji’s office told me everything looked fine as well and it wasn’t.
This was after a second opinion through Stanford noted I needed evaluation for vascular Eagle syndrome. I ultimately had bilateral styloidectomies with Dr. Osborne four weeks ago, and while my venous flow is still adjusting, I genuinely feel like I’m living again not just existing.
After Nakaji said nothing was wrong, I also pursued a second opinion through Barrow. They noted contouring and said venography could be used to rule out Eagle. However, when I asked about nerve pain and skull-base evaluation, they deferred, stating it was outside their expertise.
I’ll also add that I had sinus surgery in 2020 for fluid levels in the maxillary sinus which, in hindsight, fit the larger picture that was being missed.
Just sharing my experience so others don’t rely on a single opinion.
Hi Eaholleran & welcome!
Usually Dr Nakaji, who has done many successful surgeries for vascular ES, wants to see a CT venogram with pressure manometry , which is quite an invasive procedure, before he accepts the patients. If your CTV didn’t show any vascular compression then it would be an unnecessary procedure, there are other doctors who are experienced with ‘classic’ ES. (There’s info as well in the Newbies Guide Section about symptoms so you could see if you have anything that points to vascular ES, I’ll pst a link) ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As @MGORNEAU says, Dr Osborne in CA is very experienced, and has pretty short waiting times I think, but he doesn’t take insurance so not everyone can have surgery with him. There are a couple of other doctors on our list in AZ, otherwise Dr Samji or Dr Damrose in CA have done lots of successful surgeries too. You can search for any mentions in discussions about doctors using the search function, & here’s a link to the doctors list in case you haven’t seen it: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope that you can get some treatment soon!
@Eaholleran - I also suggest a second opinion as Dr. Nakaji has turned away some of our members who have symptoms of IJV compression but the venogram w/ manometry didn’t show pressures that he considered high enough. I feel strongly that not only the pressure test but also the symptoms a patient has need to be taken into consideration. Since you have a history of migraines, you may have vascular compression, but it could be of your carotid artery instead of the jugular. Your other symptoms sound more nerve based but are those we see associated with ES.
If you have access to your imaging, you can convert it to 3D using radiantviewer.com (PCs) or Bee Dicom Viewer App (Macs) & post some of your significant pictures here. We’re happy to give our “we’re not doctors” opinions as we sometimes catch things radiologists & doctors miss. If you do post images, please remove/cover any personal information on them.
I apologize 1000% for not responding sooner! I developed a bad bout of bronchitis and actually forgot about this until Dr Nakaji’s office just called. I haven’t seen the scans, they haven’t shown up on Simonmed for me yet it was my PCP that told me everything looked normal and sent just the findings.
My Left styloid is 50mm and right is 58mm so they are scheduling me for a consultation! I’m absolutely thrilled because I do believe this has caused SOOOO many symptoms that I’ve had for years.
If/when I get them to upload it so I can see it I will post here.
Luckily I have an appt with my neurologist for lots coming up next month and they fit me in the same day (they’re in the same building). I feel so blessed right now but not sure if I want to cry from happiness or sadness.
@Eaholleran -
That worked out well! I’d say you’re blessed & whatever tears you shed will be for both reasons which is just fine. This has been a very stressful period for you. Please let us know how your appointments go.
It’s definitely a mixed blessing being diagnosed with ES; such a relief to know what’s wrong, but not nice having to face complicated testing & surgery!
I thought the description sounded like some lengthy styloids…5cm & 5.8 cm are honking big!!! Anything over 2.5cm is considered eagles territory. Cant wait to see that imaging. Congrats on getting their attention
I too have a retention cyst in my right sinus. Its been there for many years. They always say its nothing to worry about but I have to question when it takes more than 1/3 to half of the sinus, that that isn’t something to ignore. Im curious MGORNEAU your comment about hindsight,etc. Im going in for IJV compression now after 2020 ES surgery didnt address it. New doc and he says he can take care of that retention cyst while he’s operating. I was told I had a normal CTV as well by a different doctor….well he was wrong. Always good to get 2nd opinions
I met with Dr. Nakaji and he was very kind. He showed me my CT and that showed I had jugular vein compression on my left side and my styloids were very long and he’s not surprised I’m having so many symptoms. When I told him I felt confused because radiology just said everything is normal he just said try not to blame everyone I have gone to (ents, dentists, pcps, etc) because they didn’t know what they were looking for, and it’s such a rare thing. He said he couldn’t really say more until I get a venogram done and that is scheduled for the end of this month so now we wait. Thank you everyone here for your helpfulness and kindness
I’m glad you’ve had your consult, @Eaholleran, & that Dr. Nakaji was sympathetic & encouraging that your symptoms are being caused by your styloids & IJV compression. I hope your venogram confirms that surgery will help relieve your symptoms. Please keep us updated about that.
Sorry for the delayed response, @Snapple2020, I missed the notification.
Just to clarify, I didn’t have a retention cyst. What was seen were fluid levels and chronic mucosal thickening in the maxillary sinus, which can be related to inflammation.
When I mentioned “hindsight,” I was referring to how my symptoms evolved over time. The earliest symptoms I noticed began in 2016 with swelling under my right eye and facial nerve pain. Over time, the swelling spread to my cheeks and down my neck and clavicle, predominantly on the right, and was extremely painful.
After sinus surgery in 2020, I continued to have facial swelling and pain. Not quite two years later, I was found to have a blocked accessory parotid duct. By the time surgery occurred, the main duct had sealed. My surgeon confirmed that chronic swelling could have caused this.
After the bilateral styloidectomy 12/25, one of the first things I noticed was a notable reduction in my facial swelling and my nose is no longer bulbous, which can be related to vascular compromise. I’m getting my face back and friends are noticing it as well.
What I mean specifically by hindsight, is that downstream effects were treated and many ignored for years without addressing the underlying cause. I wish the cause had been identified earlier so I could have avoided unnecessary surgery. But at the time the surgeries were necessary, because it had progressed to that point.
PS @Snapple2020, I’m really glad to hear your surgeon is planning to remove the cyst, that must be a relief. They sound like a thoughtful and caring provider, which isn’t always easy to find. I truly hope your IJV surgery resolves things for you.
This is so good to know! I have chronic sinus issues. Two sinus surgeries (1999, 2022). I have chronic sinus infections in 2024 I had 6-8. They tested my immunoglobulins and found I was low on pneumococcal ones. I got the vaccine for it and only had 3 last year? So better. But constantly have face pressure and pain in my right sinus. The ENT in 2022 told me I had a hole in my sinus (he guessed was left over from my prior surgery when they removed many polyps) he would try to fix as best he could but the way it was, my sinus just kept draining back into itself and thought that’s why I had chronic infections. However, it didn’t get better after surgery. I have chronic post nasal drip still, too.
Also my nose has become more bulbous the last couple years between pregnancy and the sinus surgery I thought it was that! So now I have some hope that will help it too I have a random bump like right inside my nostral on the right side but have noticed it goes up and down in sizes and not really sure why.
So really I’m just hoping I can have surgery and it helps even in unexpected or unrealized ways!
Thanks for the response. Its so interesting when we share stories as we learn so much from each other and validation. Ive only learned recently by reading old records that I have a deviated septum albeit somewhat mild but I am to understand this is now being commonly seen in EDS patients. This tracks with my son who was hospitalized for sepsis due to unmanaged strep. The ENT came in and showed us his CT scan and asked when he broke his nose? ah never! One side was blocked and a hole in the other sinus.
I used to have alot of strep as a kid and had tonsils etc (inflamed sinus) surgery. Ive been given recently DX of MCAS and myself & all kids have had ENT issues since young ages including the chronic post nasal drip. The list goes on and on. My records look back recently shows swelling & inflammation of the neck for 2 decades although it was never communicated to me by any docs. I have had some serious ear shooting nerve pain in my neck for 10+ years that could only be knocked down with Dexamethazone (this was a clue that was ignored). I had bilateral ES surgery in 2020 where some but not all swelling behind one ear improved. Ive always been concerned my ES surgeon did not remove all calcifications in my neck or look at vascular compression. After 5 years of struggling with worsening hearing loss and vertigo which was triggered by oral surgery, I sought out a variety of specialists. Pretty much gaslit by several docs.
After seeing a new ES specialist recently, I indeed found I have IJV compression primarily caused by swollen lymph nodes. One is even wrapped around the IJV squeezing it. Given my EDS and propensity to lay down scar tissue and adhesions, I am not surprised. Some sort of inflammatory process is suspected. Possible old dental infection..dentist said with all the root canals Ive had, its possible. Chronic mono, lyme? Wont really know until it is biopsed. Which brings me back to the retention cyst in my sinus that has been called out in scans for 20+ years. It seems to me that a bunch of old nasty fluid hanging out up there in my sinus’s is not a good thing. What is the underlying cause of all this? We shall see.
Interestingly, I pulled my full records and new doc looked at pre-ES surgery CT Scan that diagnosed the Eagles. His notes say the IJV compression is visible on that old scan. Im sharing this because 1. This is why it is worth the effort & $$ to see an ES Surgeon who looks at vascular compression….this of course is in hindsight for me. 2. Always get a CT scan with and without contrast 3. Always get your complete medical records, not just the case summaries, consults or OV notes - you will learn alot. 4. Always obtain Operative reports and pathology reports from surgery center or hospital.
I hope now that I have finally come to the point where the underlying cause is addressed as you mgorneau. Thankfully I have found the right specialist that can take me out of my misery.
@Eaholleran - We’ve had a number of members with long-term sinus issues prior to ES diagnosis & many of them found that post styloidectomy(ies), those either improved significantly or stopped completely. I have hope that will be the case for you!
