Mr Hughes has offered me a Styloidectomy for both sides! This is great news. I am currently waiting to hear if I can also get Sternocleidomastoid reduction at the same time. I have a curious case where my SCM muscle is 1.5CM bigger on the left than right. The impression is that it could be causing a compression of the Styloid Process and the nerves, and potentially the arteries around it. Will no doubt keep you updated.
If any of you want to see my SCM in its hypertrophic state, please do let me know, and I can upload that here!
I am starting to think that SCM syndrome is more of a common occurrence than consultants thinkā¦
Many people every day look down in the same direction at their laptops, phones, technology. This increases the muscle sizeā¦ then any trauma could cause the muscle to become permanently hypertrophic. This increased muscle can then press or squeeze on the local area. There are many nerves in the area, and there are arteries that run through the muscle tooā¦
I absolutely agree that what youāre seeing is a very distended IJV. In the two images you sent, it looks like thereās a constriction near the top of the distended area & a small vein or artery wrapped around it just above your collar bone so the distended area has constrictions at both ends. Thatās a pretty scary situation, & Iām absolutely shocked & appalled that someone with Mr. Hughesā reputation would have just blown you off & not sent you to a vascular surgeon at the very least.
Iāve attached your scans below with annotations. In the first scan it looks like your IJV is being constricted by a small vein just above your collar bone (indicated by a yellow arrow).
In the second image it looks like the IJV is being constricted by one small vein that is wrapped around it a couple of times or by a couple of small veins (indicated by yellow arrows).
With constriction at both the top & bottom of the distended section, blood flow is obviously not happening at a normal rate thus the immense size of that section of your IJV. I could be totally wrong about what I see, but it sure seems like thatās whatās happening.
I agree with you @Isaiah_40_31. I thought at the time that JH hadnāt even looked at the scans before my 12 minute follow up but had relied on the radiology report which I believe, also had not done what I had asked for - that is to confirm or discount ES. For an incompetent IT person like me to have to render the scan to 3D when they can do it without even thinking shows a complete lack of care, even when you pay for it. The radiology report didnāt even refer to the styloids and all requests for clarification have gone unanswered. Nor have the radiology dept sent the scans to my NHS ENT consultant, or pain consultant as I asked them to do several times.
Iāve sent the images to JH and asked again for his thoughts.
This compression might explain why my S02 drop and I pass out at altitude? Iām scared to fly now!
Iām glad youāre pursuing Mr. H on this & hope that he respectfully gets back to you. Donāt stop āknockingā until he āopens the doorā i.e. keep after him/his office until you get the satisfaction of the answers you seek. I know this is tough when you feel awful but he certainly owes it to you to give your scan a fair looking at & honest diagnosis which he apparently hasnāt done.
Thank you for your input, @vdm. I do need that reminder re: 2D images. In this case, I zoomed the images in so I could see more minute details, & it looked to me like there was something thatās wrapped around the upper part of the distended section of IJV. I do admit that I could be wrong & that is in fact artifact as it does align w/ the artifacts from her teeth/fillings.
Iām certainly no expert at reading scans, but the distended section looks like a sausage in @McWellyās neck which could indicate itās compressed in two areas though I do see that the distention could be from the lower compressed area alone. I also noted that the IJV thins out a bit before getting to the compression thatās near the collar bone & canāt account for that.
Hi there! Iād love to see your SCM state. Can you share more about how they diagnosed this? Iāve been told I likely have hypertrophy on my right side as well but no one has offered testing to diagnose it.
Hey everyone - I am back here to provide an update.
I am due to undergo Styloidectomy later this week for Eagles Syndrome. I chose to do it privately as the NHS kept refusing to helpā¦
I wondered, is anyone able to explain why a right sided fracture of the styloid would affect the left side such as vision, and visa versa? Iād be fascinated to knoiw the science behind it.
I read a lot of patients with right sided eagles syndrome or fracture had problems with their left eye or had left sided arm pain or shoulder pain.
@etherealcataclysms I can send over some photos of my SCM if youād like. I have found that it is difficult to get any form of surgery for this part of the body.
Hey there! Came across your story. My styloid looks the same and its not broken. My Dr. said that its just not calcified there which is a good thing because when you look down the calcified part will move away from the IJV/carotid instead of into it.
Also, the SCM part is the same. Mine is very tight and big since birth injury. In my CTA/CTV it shows it compresses my jugular. I showed the scan to a neurologist in the Netherlands today and he diagnosed me with cervical dystonia and I am scheduled for botox June the 6thš„³
Weāve definitely seen some members with cross-over symptoms, so it is a thing, even if explaining it medically is tricky!
A doctor experienced with ES has said written this āA new diagnostic classification of Stylohyoid Complex Syndrome (SHCS)āā¦ by Candice C. Colby, MD; John M. Del Gaudio, MD in their paper āStylohyoid Complex Syndrome- A New Diagnostic Classificationā (JAMA Network). They suggested that an elongated styloid process, ossified stylohyoid ligament or elongated hyoid bone could result in tension and reduced distensibility of the SHC, resulting in irritation of the surrounding cervical structures with movement of the complex.
So as this is all one interconnected structure, I guess if thereās calcification and stiffness in one part, itāll potentially reduce flexibility in the whole structure, so that could still cause nerve pain on the opposite side? Just my personal theory!
Whoās doing your surgery? Iām sorry that youāve had to pay out privately, itās such a frustrating system here! I hope that it all goes well for you, have you read up about what to expect after surgery?
Iāll be praying that itās successful for you, let us know how it goes when youāre up to it!
