This makes sense! I measured mine to be around 30mm. I’m thinking the neck curve and congestion happening in the area is more likely the culprit. Thanks for the research!
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Glad to hear things are moving forward for you and that you are receiving some good information. Sorry to hear about the tethered chord. I’m not really familiar with the condition but I’m sure it’s been a pain in your back and likely fits in your puzzle symptomology!
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I think you could be right about the plane, I didn’t even think of that @Jules !
Just called Dr. Cognetti’s office yesterday. Desk admin said that they have received my CTA and that I should hear back latest by Monday to book a consult. They told me my consult will be free! Not sure if this is typical of Dr. Cognetti or if it’s because I’ll be paying out of pocket since I’m Canadian or what. But it was nice to hear!
I will definitely be getting married styloids or not lol. Little nervous but if I faint then I faint, not much I can do! Nothing is going to stop me from getting married!
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Haha yes, it has been a pain in the back 
. Thank you though. I’m glad too - the more information the better, I think.
I hope all is well with you!
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Yes, absolutely. I’d rather know than not know. That’s also reassuring to hear that some members have had successful surgeries. It doesn’t seem like a horrible thing all things considered, just another hurdle or obstacle like you mentioned that I wasn’t expecting. Now that I do know, I can work on figuring it out next steps.
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@Isaiah_40_31 Any idea how long the lesser horns are supposed to be? On mine, I don’t know if I’m looking at lesser horns, or calcification of the ligament up from them. And yes folks, I know my left IJV is disgustingly pinched between C1/styloid. Dr. Hepworth took my right out/decompressed IJV in December and is doing my left in August. I have very similar symptoms and onset to the ones that TML posted.
The lesser horns are a bit longer than typical ones we see; whether they’ve elongated or whether it’s the stylo-hyoid ligament calcified at that end I don’t think you can say for definite… the greater horns look pretty long & thick to me as well, obviously not a medical opinion though!
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@Isaiah_40_31 and @Jules I reached out to Dr. Constantino’s office awhile back and they just yesterday gave me a call to see if I might be interested in setting up a consultation. Do you all feel like he might be a good person to meet with regarding the IJV compression while I’m waiting on Dr. Nakaji? I am having a consultation with Dr. Nakaji’s interventional radiologist in late July but it sounds like it might be a slow moving process.
Dr Cognetti has been working with a Dr Heller apparently for patients with IJV compression so although he hasn’t been doing these surgeries as long as Dr Nakaji, it wouldn’t hurt for you to have a consultation & get his opinion…
@Kit_Cat - Dr. Costantino would be a good resource for another opinion. He’s done vES surgery for quite a number of our members. You probably won’t have to wait as long for an appointment with him as w/ some other doctors. I was in contact w/ one of our members recently who said she just scheduled for an initial consult w/ Dr. Cognetti, & it’s not till Jan 2026. That seems ridiculous to me!!
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I agree w/ @Jules assessment of your lesser horns, though it’s not clear whether they would be problematic at the length they are.
Your greater hyoid horns do look somewhat thick, but I can’t tell if they’re longer than normal or if it’s the angle of the imaging that makes them look pretty close to your spine. Do you have tenderness in the area of your hyoid &/or clicking when you swallow?
I edited your images to remove your name. Your left styloid is gnarly & your poor IJV looks quite squashed. 
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@Isaiah_40_31 Okay I’m glad you all think so! I was able to get a consulation later in July , so that is fairly soon! I did submit the request on the website about a month ago I feel like, so I honestly had kind of forgotten about it and was surprised to get the follow-up call. I am happy to get more opinions though!
Regarding waiting for an initial consult with Dr. Cognetti, that does seem ridiculous! That’s so unfortunate too because most of us are just silently suffering as we wait to see these doctors. Hopefully within the next decade or so, more doctors will be aware of these conditions so the few that do specialize in these conditions won’t be so overwhelmed and more people will be treated quickly, plus more research, etc.. Fingers crossed at least! 
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There is something we might be missing since we aren’t radiologists or brain surgeons. Nakaji’s office called me at the first of the month. I couldn’t comprehend what she was saying to me because it didn’t fit what what I was seeing on the imaging so I asked to send his note to me in an email.
When looking at the exact frame that the radiologist mentioned it was clear as day to me my IJV was severely compressed as noted by neuroradiologist but my email says this
" no clear styloidogenic venous compression on either side with head in neutral, opacification of contrast is significantly delayed on the right suggesting a clinically meaningful cause. ."
just throwing that out there..I have no idea what is going on with me yet. I did find a place in Louisville, KY that will do outpatient Transcranial Doppler.
I am wondering if anyone has actually gotten the full TCD study . There are different codes for it. my insurance requires prior authorization for some of them but not all.
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@Isaiah_40_31 Thanks! I don’t have tenderness, or clicking upon swallowing, at hyoid area. I do have occasional restriction when swallowing liquid - like it’s tight and painful trying to get it down and it’s usually only with a big gulp. It’s very rare. What I have noticed, since R side surgery, is tenderness/swollen feeling just inside the cartilage (bone?) around voice box (trachea?) on right side… with a “long stick in throat” sensation that goes from there up to the right base of my tongue and inside right ear. I’m wondering if it’s a bit of GPN irritation since that surgery. The R styloid is gone, so I know it’s not that. I do have a large and small thyroid nodule (that you can see in my photos) - don’t know if it’s that. The FNAs on the big one keep coming back as non-diagnostic, so my local ENT and I decided to leave it alone for now. I can ask him, or Dr. H, about it potentially causing that sensation when I have my next office visit with either of them.
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@JugularEagle I read that as compression on the right caused by something other than the styloid
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my styloid is so wide and thick and long it is hard for me to see how it is not involved but I have to defer to the neurosurgeon who knows what he is doing. I did see an article where someone claimed (dont remember his position) that often it is the C1 that is the problem and styloid operation is useless. A neurovascular surgeon said I had long calcified ligaments but that terminology did not show up in my report
thanks for your interpretation.
Often the C1 is involved as well, but sometimes removing the styloid can give the vein space it needs to open up… and usually members with elongated styloids who come on here have other symptoms, nerve pain etc so it’s worth doing the op for that anyway. Frustrating for you, I’m not sure I’m understanding right, does this mean Dr Nakaji doesn’t think the surgery will help you? 
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@Ladymaestro1 - The symptoms you’ve mentioned on the right sure could be from your GPN being irritated. I had the same tongue symptom prior to my left styloidectomy but it went away after my styloid was removed vs. starting up afterward. I’m going to go out on a limb & speculate that it’s possible your right GPN symptoms will clear up once your left styloid & IJV decompression are done. Crossover symptoms are a real thing & it’s possible the imbalance created by having one styloidectomy has shifted soft & hard tissues such that your right GPN is being irritated now, but those may shift to a more neutral position once the left styloid/IJV decompression is done. I hope that’s the case.
I also have thyroid nodules, a couple that are calcified & have to be checked every 6 months. So far, mine are also benign. I’m glad yours are also “insignificant” at this point. It would be good to ask Dr. Hepworth whether your larger nodule could be affecting your GPN as that is an interesting thought.
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Just got booked in for a consult with Dr. Cognetti for JANUARY 14TH. I’m almost hysterical about how long I’m going to be waiting. Not sure if I just struggle until January or look elsewhere. And that isn’t even the surgery date, if I in fact need surgery. I’m not sure if he has a consult with every single client, or just clients that need treatment based on their imaging? Would be unfortunate to wait until January to be told my scans look fine. Apparently Dr. Cognetti only does 1 ES consult per month according to the scheduling person I was speaking with. Really bummed. On the cancellation list, but that would be a miracle. Might help that it’ll be a virtual appointment.
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@TML - I totally understand how hard it is to wait for care once you know what’s causing your symptoms & am so sorry Dr. Cognetti is booked out to January! Hopefully being on the cancellation list will allow you to get your appointment moved up a bit.
Two things - 1) Dr. Cognetti won’t consult with someone he doesn’t feel he can help via surgery. That’s why you have to send your scans in ahead, so he won’t waste his & a patient’s time when he doesn’t feel he can help.
2) Dr. Cognetti only does ES consults one day/month & sees/virtually consults w/ a number of ES patients that day. It used to be the last Friday of each month but I see he’s changed that based on your consult date. His focus is cancer patients/ surgeries, but w/ the number of requests he gets for ES consults, I’m really surprised he hasn’t made ES more of a priority in his practice. Once you have your consult, if you decide to go with him, your surgery date will be within a few weeks to a month.
In the meantime, see if you can get an Rx for a blood thinner (Plavix, Brillinta, Xarelto) from your PCP or ENT as that has been shown to help reduce the vascular symptoms in some people. We’ve also had mention on here of some supplements that help reduce brain fog - Creatine or Citicoline but you MUST consult w/ a doctor before starting something like that to make sure there would be no negative drug interaction with any other meds you’re taking.
Are you sleeping with your head elevated at night? Have you tried icing your neck 20 min on every couple of hours? Lidocaine patches (if you can get them) can help w/ pain.
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