Newbie overwhelmed. Hi folks. On phone and having a moment of anxiety about all this Eagles bizness. My PCP didn’t feel she should get a 3DCT covered by insurance because of diagnosis codes and didn’t want to get denied so wants me to see an ENT. I know there are two in Boston on the list but no stars next to their name. I’m trying to think positive but done enuff of Dr. bouncing and refuse! Think I may call an out of state expert and see if they have referrals? Scared. Will check in later on computer so it’s easier to write!. Phone won’t let me see if I hold it horizontal lol. Grateful for this support page. Tired of feeling I’m going crazy.
Hi!
It can be overwhelming, and exhausting to keep trying different doctors. I’m UK, so not very familiar with the US system, but a 3d CT is the best scan for diagnosis, most other members have been able to get that at least… Mine was spotted and diagnosed on a panoramic X-ray/ panorex, so it can be seen other ways, but looking ahead most docs prefer the CT, so you don’t want to keep exposing yourself to too much radiation…
If you are thinking of looking further afield, probably again you’d find that you’d need to send a copy of a CT scan to the doctor anyway. There was a recent discussion about what Dr Samji’s office prefers- it’s clarified at the end of the discussion:
Hopefully some US members will give you advice about getting round the system!
If your PCP or GP is referring you to an ENT, otolaryngologist, or skull-base surgeon, then you’re on the right track. No need to jump ship. 
You’re probably best to ask for an ENT that is a skull-base surgeon or works at your nearest university teaching hospital. And then just be patient with the process. It took me 10 months and 5 visits with surgeons and interns before the surgeon was willing to take the plunge, and that time may be a good thing. This is not something to take lightly. I thought I was going crazy, too, and it’s okay to say that to a doctor; they know how hard this illness is to diagnose, and you’re not a fool for questioning your mental health. I know I did. Somatization disorder or FND is a real thing, and must be considered if you are a rational person. However, it would be just as foolish to ignore signs and symptoms of ES.
My case was not ES, but the CT scan and video camera caught a problem with a neighboring piece of cartilage. Plus my symptom triggers were clearly pointing to my neck. So we took the plunge with reasonable certainty and fixed a problem with the left horn of my Adam’s apple. It was unusual.
Styloid problems are more common and show up bright and clear on a CT scan. Sadly, some surgeons overly-rely on length measurement of styloids to define ES and make their decisions accordingly. They play it safe. A good question to ask is “how strongly do you rely on styloid length to make your decision to act.” And “how much weight do you put on listening to the patient?”
Sorry this has to be so complicated. This won’t be an easy journey for you, I’m afraid. My advice is to buckle up and be smart. You can be scared, too. My journey was 21 years long, so I understand how excited you are. Just keep your head above water and be both smart and scared at the same time. 
Hi Jules thanks for the reply! I just read all that…wow talk about confusing. I don’t understand why the with contrast isnt important? Isnt any compression of soft tissues part of the “Eagles Syndrome” package? Or why it’s just the length of SP that is emphasized…because can the stylohyoid ligament cause problems if it is calcified? Still trying to sort all this new info out!
Yes, I am basically trying to do the work of a doctor I think, because I am so tired of the bouncing from one to another LoL. I have to just let go and surrender to the process =).
Thanks!
I’m just guessing, but I am surmising that Dr. Samji is just interested in whether you have Eagles or not. It doesn’t really matter so much to the surgeon if it’s vascular or “regular” Eagles. They still have to take the styloid out. So I’m guessing he just wants the bottom line - a good measurement of the styloid.
I know when I had vascular Eagles on my right side, the doctor didn’t really believe there was such a thing, but he took out my styloid anyway and cured all my vascular symptoms. So the scan didn’t really matter - as long as he took out the styloid.
Again, I’m just guessing why Dr. Samji’s office changed their requirements. When I had my non-vascular surgeries with him, he just wanted the scan. I think it didn’t even have to be with contrast.
When I contacted Dr. Forrest’s office about possibly seeing him at one point, he only wanted a regular ct scan. He said it was ok if it was with contrast and ok if it wasn’t.
So those are two of the most experienced Eagles doctors. When I saw Dr. Cognetti (another one of the most experienced doctors) he sent me for a scan with contrast. So I guess you have to get what that particular doctor wants.
But I have a question for those who know more about the technical stuff than I do. If you get a ct scan, you get a regular scan, and then they put in the contrast and do the scan with contrast. So if you get a contrast scan, don’t you still have the regular non-contrast scan results also? Don’t you have the results of both? Can’t the radiologists just look at the non-contrast part if that’s what’s called for?
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Hi Mark!
Thanks so much for the reply and for sharing your process! I am weary because it has been almost 2 years since I started a crazy journey after a minor incident left me with severe symptoms. The journey really started 24 years ago to be technical lol…but the urgency part was 2 yrs ago. Months of being treated for one thing and consulting with surgeons until my gut (YAY I love my gut) told me to go a different route. Found a specialist (thank God for the internet giving us the ability to research) who is not eager to cut people open, had PT for thoracic outlet syndrome. Again found my own therapist, as the one the expert referred to was making me worse. He helped immensely but there was still a level of “something just ain’t right” was about to go for 2nd consult for that surgery til I decided I needed to focus on TMD part of it. Months later and $3000 down the drain, researched more and found a real specialist. TA DA he sees the elongated SP in the xray series he took. He wasnt sure how much of my symptoms could be attributed to that. Since I don’t have the finances yet to start treatment with him, and since over the last month things have gotten kinda scary I started focusing on this brand new funky thing in my life. Life is crazy aint it?
Whoa, that was a mouthful, I didn’t intend to spew my nutshell at you, but there it is. I feel better lol it helps so much to be among people who have been through the ringer as well. I love to hear when other people have felt like they are going crazy…it validates that we are not.
Thanks Mark
PS was the CT scan with or without contrast? And was a video camera part of that?
@heidemt- When I had my CT with contrast, they just did the one CT I think, I don’t think they did one before putting the dye in. Whether that’s the UK way of doing things, i.e. saving money 'cos it’s the NHS I don’t know!
Oh really? That’s interesting. When I had my scans, they took a bunch of pictures first and then toward the end they injected the contrast and finished up with contrast pictures.
Yes, I wasted time with a TMD specialist, too. $3000 for a bite splint that helped, but it didn’t explain why my symptoms were triggered by pressing lower than my TM jaw joint. The whole area under my skull was so sensitive. My jaw was the upper end of influence, but the problem was lower down. It took a long long time to figure this out. I wish a doctor had pressed or probed on my neck 20 years earlier, or asked me to turn my head and hold it for a few seconds. Such a simple test… What a waste of time!
@Mark7b so sorry it took so long =( you mentioned the cartilage as being culprit, were your symptoms similar to Eagles symptoms? Thinking about the discussion @Jules, @heidemt re Dr. Samji’s requirements only needing to know how long the SP is. There are so many factors in the whole chain that could be problematic from what I have retained so far in reading. So is it the 3DCT with contrast that would show problems with the ligament etc? Mark what was the video portion you mentioned? I haven’t gotten this far yet…what happens to the chain as a whole when they remove the SP? Have you two had surgery? Mark are your symptoms totally gone? Just that extra piece of cartilage was responsible for what I’m guessing was a lot of pain and misery? Does your car get good gas mileage? lol. Forgive the barrage o newbie questions.
I was excited to finally be at the consultation with a true expert in gneuromuscular dentistry. The first one I saw was sloppy and psuedo, and I wish I had done my research beforehand =(. Anyhoo thank God I ended up in the right place. Was so sure all my symptoms were due to my jaw being retracted and deviated from having 8 extractions then braces ruining my occlusion. I am very small framed so that compressed things tremendously. What a shock to find out it is only part of the problem…like you said Mark…lower still! It’s like unfolding the pieces of a jigsaw puzzle. Just when you think you have all the pieces and you might put it together for good…bazinga! I can’t wait to find out what the heck is happening.
Interesting, I took my Dad today for his 1 week post op appt. from rotator cuff repair. They also sliced off one of his bicep tendons that was torn. Just slice it and let it drop lol. WHAT? The body is crazy. He has this awesome new app that lets you work with a 3D skeleton and add on muscles, tissue, nerves, blood vessels etc one at a time so you reallllllly get the whole picture. Its surreal.
Well for you guys and anyone reading who has had surgery I hope with all my heart it brought relief that is everlasting.
I had a 3DCT last year for thoracic outlet injury, with contrast, and I can’t remember for sure but I think they took pics before the injection too. It was cervical and thoracic area so it’s feasible that some of this anatomy in question now would be visible and I intend to get a copy of the results. After the results were in I asked for the images and the nurse said “oh it’s too hard to read you wouldnt be able to tell what anything is”. It is a special protocol developed by the thoracic surgeon for diagnosing TOS. I never went any further with it at the time because I was overwhelmed with dealing with the pain I was in and didn’t care as much about my record keeping obsession. She really seemed opposed to my request and in hindsight that bothers me!
The scan could well be useful then, if you can get a copy! These medical staff are so secretive- scared of the competition from Dr Google!! Did they get the TOC diagnosed/ fixed? I don’t know alot about it, but some of the symptoms of TOC seem to overlap with vascular ES, and we’ve had several members on here with both. The stuff you mentioned about teeth I can sympathise with too- I had that done as well, and only have a small jaw myself. It didn’t so any good either! I have read that they’re now thinking there might be a link between having extractions like that and TMJD, and also came across recently research showing a link with TMJD and elongated styloids… sometimes you can go round in circles with these things though they seem interlinked!
I do agree with what you’ve said that the styloids are only part of the problem, there can be more to it than that. One research piece I’ve seen calls it 'Stylohyoid Complex Syndrome- SHCS. As well as elongated Styloid Processes and calcified Stylohyoid ligaments they also suggested that ‘elongated hyoid bone processes could cause tension and reduced distensibility of the SHC, irritating the surrounding cervical structures with movement of the complex’. A 3D CT with contrast would show problems with any ligaments, cartilage and also blood vessels- as long as the radiologist knows what to look for! Which could be why they didn’t pick anything up on your scan.
Let’s see if I can answer your questions:
The video camera is something they stick down your nose and throat to look at your vocal cords. I think its standard procedure. I can’t remember if I had contrast or not with my 3D CT scan. That was 10 months ago. I had surgery 46 days ago to remove the left superior horn of my Adam’s apple. Basically the left side of my voice box. This piece of cartilage was bent inward and intruding in places it shouldn’t. I’m guessing there was a nerve entrapped, which was causing me problems. They could see it poking into my trachea. Poke, poke. And it produced a whisp of an image on the CT scan. Bones show up clear and bright. (Styloid, Hyoid, etc. ) But calcified ligaments and cartilage not so much. That’s why it’s important to listen to the patient and build trust with the doctor. The 20 percent (estimates vary) failure rate is another reason to be cautious and be sure you know what’s what before deciding to attempt surgery. It’s a guessing game.
My surgery has helped me sleep. I’m comfortable lying down. Yippee!! Sleep is so nice!! 46 days later I’m still having issues lifting heavy objects. I can’t pick up my saxophone case without triggering speech problems. I think the nerve hasn’t healed yet. Movement and pulling sets it off. I’m guessing it’s been rubbed raw and lost its myelin sheath and needs to grow a new sheath. Don’t know for sure. My surgeon is spare with words and theories. And he and I haven’t talked after surgery. He might open up more when I see him again in September. But my assessment right now is that the surgery is a big success. I can sleep and my symptoms (shakiness and speech problems) are much, much reduced. Almost completely gone unless I over do things. 
I used to be able to trigger symptoms by pressing around the TMJ joint. Still can if I really press long and hard. In 2013, I spent time with a dentist. He wasn’t a neuromuscular one. His splint hurt quite a bit. The splint was huge. It was not the neuromuscular philosophy at all. He basically followed my direction about how to position it for best results, which was a) wide and b) forward. So I turned myself into a grinning idiot. did a lot of research and could not find a better choice in Washington State. But I did find a few who had taken GNM courses in Las Vegas recently.
I found out the answer on this the hard way. The radiologist does a non contrast as a “Base” picture before starting the scan with contrast. That non contrast base scan isn’t kept. Only the contrast scan is kept. I had an MRI with contrast. Then I had to wait the 6 weeks needed between tests to get the CT with contrast only to find out Dr. Samji wanted a Non contrast scan! I remembered the radiologist doing a non contract portion Thought it wasn’t a problem and then I found out it wasn’t a full scan just a reference “base”. When had the CT scan My doctor called into the radiologist center and told them that it was for ES so she could “prepare” only for me to discover that she didn’t. When I asked at the appointment she told me she didnt find the info in the little time she had find to find the "protocol ". I asked before the test and they were basically “winging it” (sigh). When Dr. Samji saw the pictures he complained about wasn’t nearly enough "slices"but the rough estimate measurement still pointed to ES. if I could do it all over again I would call ahead of time and tell the radiology business that they need to know the ES protocol. If they don’t to call Dr. Sammie and get it. I would also call my insurance company to give them a heads up if it sounds like they plan on “winging it”.
Get that old scan!!!
It could be a huge help, or even help eliminate other possibilities of issues.
I was DXed by chance after I had severe TIA like symptoms a couple weeks after my rib resection/TOS surgery. I was lucky the radiology resident what looking at more than just protocol, noticed some gnarly calcification on my hyoid and styloid, and was familiar with ES enough to recognize it.
After the DX I went back through some of my old cervical MRIs taken while trying to figure out what my issue was, and the spike coming out of my hyoid was visible in all of them. They just gotta know what they’re looking for, and willing to consider it may be Zebras rather than Horses when they hear hoof beats.
The CT scan with contrast, in the case of the head and neck, is to show finer detail especially of any possible vascular involvement or highlight certain types of lesions, compression, etc. They wanna see your blood vessels glow.
Insurance can be a real pain about this kinda thing, but if you’re having numbness, weakness, etc, or any vascular symptoms, I’m a little surprised your PCP didn’t try to push it through to check for an ischemic event. Like Mark7b said, ENT is on the right track.
Get a copy of this scan too (On all my CTs they saved both the contrast and non contrast images) so you can make copies and send them out. Let the radiologists know you’ll need a copy before the scan, ask for it again after the scan. Get that CD in your hot little hands. It’s gold.
I also had Really crazy TOS issues in part related to my ES. I’m Still doing clean up on what that tiny bone did with my brachial plexus.
I’d love to talk with you about your symptoms and swap symptom management ideas.
@Jules you said it…egos are so threatened by patients educating themselves and that is just so damn INSANE.
So in regards to thoracic outlet… It is all incredibly connected because it’s such a small area, even more so if you are a small person. All I know is that once I found the right physical therapist, he helped work out some of the muscular entrapment that was preventing any kind of proper functioning, and that was all classic TOS stuff that he saw in me. He also saw that when I had my jaw in its normal functioning position which was retracted and deviated to the right, I had barely any ability to utilize the proper muscles to support the upper back and prevent the shoulders from rolling forward and thus the neck. And that when I focused on relaxing the jaw to what would be a more healthy proper alignment, my strength doubled and nerve pain disappeared. So it makes sense that if the jaw is deviating, then whatever is in that space under the jaw, is being pushed around and pissing off tissues and vessels and inflaming nerves lol. Sorry to hear you had your teeth messed with too. It is so hard to comprehend some days…how that seemingly normal procedure messed our whole skeletal system up. Very sad.
I am fairly convinced I have some hyoid issues going on as well. I’m guessing the whole chain is just all a big block of concrete lol.
I got my old CT scan. I had some trouble with the computer so I don’t know if I was missing images or if there werent that many but I have to look at it again. It’s not quite what I expected but then again they did say it was a special protocol he created for TOS.
@Mark7b LOLOL poke poke. Thanks I needed that giggle.
Ok…so I thought calcified ligaments were easy to see on CT scans…ok good to know they aren’t.
Wow I am so glad you are able to sleep, that is one thing I have no trouble with, it’s the waking up in bad positions that does me in. Yes you are so right…about the nerves. They take sooooo long to heal and it can be so confusing trying to sort out what is what. In general I think the best way to go is just think…“what can I do to decrease inflammation” regardless of knowing exactly what it is. Thats my problem is I SOOO want to know exactly what is what and I have started to accept it’s just not possible. Gotta use your intuition and trust your body and be gentle.
@SnappleofDiscord I thank you for your input! I got the scan, I have to find it on my computer and look at it again, but I can’t find it and I left my copy with the Dr. last week. It’s so hard to navigate those things, if you aren’t super computer savy. But now that you say that about MRIs Im gonna go look at my old cervical ones. Wow, yeah talk about yay for the resident. Gnarly. LoL. I love the zebra reference…perfect.
So good to have that advice…before and after scan ask for copy.
Hmm sounds like we may have some common ground, definitely let’s swap.
It took seven months of hospitals and Dr’s to get diagnosed. Boston to Philadelphia is a long haul but I have surgeon at Jefferson. He also will diagnosis you. Dr. Cognetti. It is very scary and frustrating. Keep pushing forward. Good luck and yes this support group is awesome.
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Did you have surgery with Dr. Cognetti?