My virtual consult initial in January is free @Isaiah_40_31 !
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Typically for CTs in the standard view the image is flipped. So everything you see to the right in the axial view is actually your left and vice versa. But when you turn it into a 3D model it makes it is the correct orientation - right is your right and left is your left. Weird how itās flipped in standard view but good to know!
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Good evening all - I hope this note finds you all well. Quick update since my last note. I was a bit discouraged in my health journey after hearing from my regular ENT that he did not note my styloids to be elongated, thus pointing away from ES-like issues. As such, I looked into the possibility of CCI. After getting a DMX, it was confirmed I had very slight, borderline normal C1 over C2 overangs at 2mm. Dr. Centeno (while I never formally met with him) considers this to be normal, so I was not completely sold that CCI was my issue.
Based on the feedback I received on this thread, I thought it was worth getting a second opinion, so I sent my imaging to Dr. Cognetti in PA. Later in the week that I sent it, I got a notification that mychart had been updated to reflect commentary on the imaging. All it said was āno impressionā so I assumed that meant that they looked at it and did not find anything. Looking back, I am wondering if that was just placeholder language that was in there and they hadnāt even reviewed the imaging yet at that point.
Anyway, I got a call from Cognettiās office asking to schedule a meeting. As I was under the impression at the time that they did not find anything, I asked why they wanted to set the meeting up if they found nothing. They said they could not go into detail over the phone, and I asked whether theyād ask to set a meeting 3 months in advance if they had no findings, and the front desk lady said probably not.
I have my call with them next week. I still do not know what this means, but hoping they found something that is material and able to be addressed. Based on a lot research that was instigated by some of the comments above, I fully think this is Jugular compression related, but we will see what happens. Fingers crossed and I will update the group. Thanks!
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I think if I remember right that Dr Cognettiās office reviews the scans & only makes appointments if they think that people could be helped with surgery- Iām sure as youād already queried this with the office that they do feel itās worth having the consultationā¦you have the info from here to mention, obviously weāre not doctors but thereās suggestions to ask about. Hope that it goes well, & look forward to hearing your update!
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@AugustWest94 when Cognetti writes āno impressionā it doesnāt mean that he doesnāt think you have ES. He wrote the same for me and then booked me a consults, which as @Jules mentioned, he only does if heās offering surgery because he thinks surgery is warranted. He just writes āno impressionāā because his explanation of his findings are better in person.
Your styloids are not 3cm, so most uninformed doctors are going to tell you that you donāt have ES. But as I noted on your imaging above, your styloids are very close to C1, particularly your left. And since important nerves and the IJVs flow between the styloids and C1, you almost certainly have compression happening there.
Here is a paper (written by Dr. Cognetti actually) that explicitly states that ES is caused by the space between C1 and styloid, and not necessarily the length of the styloid.
This isnāt to say that you donāt also have CCI. But I can say that your styloids are too close to your C1.
Iām really glad you are meeting with Dr. Cognetti!
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Thanks all. Staying hopeful. I have not really seen much of any anecdotal evidence on this forum or other Facebook groups to make me feel like styloidectomy/c1 shave will have a positive outcome. But Iām Hoping Iām wrong.
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@AugustWest94 itās hard to judge surgery success rates on the forums. This is because when some people get a surgery and feel better, they dont stick around on the forum or even provide updates - they move on with their lives. Thus, most people you see on the forums are either (1) looking for a diagnosis, (2) looking for a surgeon, (3) preparing for surgery, or (4) coming back to the forum to share that didnāt find any/all relief from surgery. Most of the success stories are those who donāt post their story because they are back to enjoying their lives.
Have you happened to get a CT with contrast since weāve chatted last?
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That is encouraging to hear TML! Nope, havenāt had any additional imaging related to styloid related stuff since my initial post. The only imaging I had was the DMX for CCI
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Glad I can instill some hope!
Given that youāre in the symptomology realm of ES & CCI, I would highly suggest getting a CT with contrast (if you arenāt going head first into surgery with Cognetti). There are a lot of overlapping symptoms between vascular ES and CCI, and so a CT with contrast can help evaluate vascular compression and how it may map onto your symptoms. I suspect IJV compression, particularly on your left side, and vagus compression as well (even though CT wonāt show us that piece). CT with contrast can also help us evaluate whether your hyoid or thyroid cartilage could be contributing to any symptoms.
I know it would be more radiation exposure, but with your constellation of symptoms I really think a CT with contrast could be a huge step in your journey.
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Thanks TML! Will do. I think thatās a good idea. I am praying that this is more jugular compression vs CCI. Based on my CCI imaging and the fact that Cognetti is reaching out, I donāt think thatās an outlandish hope to hold on to. Jugular compression seems like a much easier (but still very hard) prognosis to deal with.
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I agree with all of that!
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I had bilateral IJV compression (although no C1 involvement), I had great results with my first side styloid being removed, but I nearly didnāt have the surgery as a member who saw the same doctor as I was going to see posted after his surgery about how awful he felt, & how he wishes he hadnāt had the surgery! Luckily I messaged him after a few months to see how he was doing & he said he was feeling great, but hadnāt ever come back to share that! So it could be that some stories youāve read on here or on FB are similarā¦As well as the explanation that @TML gave you about surgery success, Iād just add that many people on the forums have had years of dealing with symptoms, so surgery wonāt be an instant cure very often, but can take months of PT trying to undo potential damage of muscle tension, bad posture etc. And also weāre seeing quite a few members with more than one medical condition to cope with, so it may be that several issues need to be addressed before theyāll see benefits, unfortunately.
They might not all be about C1 shave & styloidectomies, but if you use the function to look up successful surgery for ES it should come up with quite a few stories.
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Thanks Jules - this is encouraging.
I did have my appt this AM. She was the most knowledgeable doctor Iāve come across on this stuff by far and very nice. She agreed the styloids are normal length but are thick. And, noted they do seem to be close to the spine (c1). She said she was not completely sold that my vocal, globus, choking feeling issues were related but that the more fatigue, brain fog, memory issues would be in line with jugular compression. She had me get more imaging so I am doing a Ct scan of neck with contrast next week. I guess this can show vein compression. She said she def cannot rule out the jugular compression is at play here. Not quite the āsmoking gunā sure thing that I was hoping for but I guess itās a good step.
im still very concerned about about the inter-condition nature of a lot of these cases. For me, itās this stuff, combined with what could be CCI (though DMX only showed borderline normal results). I just know that based on all my readings here, when different conditions like CCI, CSF leak, thoracic outlet syndrome, etc it can really play a factor in whether or not the decompression, potential shave is a good idea. I wish all the doctors had a complete understanding of all the other potentially impactful conditions.
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We absolutely agree with you regarding this statement @AugustWest94!
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Good that sheās taking you seriously and is investigating the IJV compressionā¦I appreciate your concerns about possible TOS, CCI, etc, unfortunately sometimes you have to bite the bullet and start with one surgery, see what that resolves and take it from there, it is frustrating how even the very experienced doctors canāt even agree!
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HI all - I had my appt. with Crippen of Cognettiās office, and she ordered me a CT scan with contrast (last one was without). I took a few screenshots. Anything look noteworthy? And any other visuals that make sense to post?
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@AugustWest94 - It looks like you have some mild IJV compression w/ your head in that position, but it could be worse w/ your head turned the opposite direction or w/ neck extension.
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I agree with @Isaiah_40_31 , hopefully @TML can suggest some other axial images which would be helpful to look atā¦
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@AugustWest94 if you want, I can take a look through the entirety of your imaging and show you what I see. The best way to do so is by putting your CT files into a folder on google drive and then private messaging me a link to the folder. You would no longer be anonymous to me, but I would not be sharing any of your personal information. Let me know what you think!
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