Hi everyone. Im new here! But have had eagles for years! Got quite a shock today to see just how big these were! No wonder i feel so terrible!
biggest symptom is i feel fatigue like I can barely function, i spend so much of my day in bed. Theres a lot of pain, so much pain I can hardly even tell what hurts anymore. Over the years I have wondered if I was dying! Cancer they couldn’t find or something! So im so relieved to finally look at this and say wow no wonder! I have 2 young kids and am a solo parent i need to get this sorted ASAP!
Am meeting with my specialist in a few weeks to discuss further now that we’ve confirmed the styloid are like this! Initially he suggested going in through the throat and doing and tonsillectomy at the same time. Sounds good to me. Thoughts?
Would love everyones input on firstly my imaging and secondly what questions etc I should ask.
I want to explore how its affecting the nerves and veins and also if there’s a c1 compression. I cant tell from my images but im not really sure what im looking at either.
@Chrise - Welcome to our forum! I’m glad you’re here but am sorry you’re feeling so awful. So difficult for you to have 2 young children & no energy! As your symptoms have you bed-ridden, I’m concerned you might have internal jugular vein (IJV) compression which can contribute to the terrible fatigue symptom as it causes intracranial hypertension (IH) i.e high pressure in the brain. The IJVs drain deoxygenated blood from the brain as the carotid arteries take freshly oxygenated blood into the brain. When the blood flows in faster than it can exit, IH is the result & causes a number of symptoms.
If your styloids are quite long &/or if you also have IJV compression, the intraoral surgical approach is not the best as the styloids generally are not cut as short that way. It also has a much more painful recovery, especially if your tonsils are removed in the same surgery. The transcervical (through the neck) approach allows the surgeon to see & move nerves & vascular tissues out of the way & also permits cutting the styloid back very close to the skull base which is what we’ve found provides the best long term results. If the IJV is compressed, it’s also accessible for decompression which sometimes requires a bit of the C1 vertebra to be removed to make more space for it. That cannot be done via intraoral surgery.
I’ve upgraded your account so you can post images of your styloids & if your scan was done with contrast, we’ll also be able to see the IJVs & carotids. Please make sure to cover or delete any personal information that is on the images you post.
I didnt do contrast on my ct so I dont know and cant see any obvious images which show that being highlighted. I might have to do another! Because that is my main concern too.
I will discuss this with my ent in our next appointment. Thanks for that I will use that information to guide my discussion with him.
Have uploaded some images so others can see how huge they are!
Goodness, these are huge! Probably up there with the largest we’ve ever seen!
The images are very clear, you have a very elongated styloid on the left side, (on the right in the 4th image) and a small calcified section of the stylo-hyoid ligament up from the hyoid bone, and an extremely thick, elongated styloid on the right, (left on the image) as well as then a long section of calcified stylo-hyoid ligament too. I’m sorry but I’m not techy enough to be able to label the images for you…
These, from our experiences on the site, would be very difficult to remove enough to make a difference to your symptoms via the intra-oral surgical method, so I would try to get another opinion from a surgeon who does external surgery… I know healthcare is difficult and you might have a wait, but if you have surgery with the doctor who will do intra-oral, it’s unlikely that it would improve your symptoms that much…
There’s a glimpse of blood vessels on the last bit of image- I don’t know if you have the full one to upload? It doesn’t show enough to look for IJV compression but from the section I can see it looks like there’s some swollen veins around the skull base, which are called collateral veins and can indicate IJV compression (collateral veins grow larger to take some of the blood flow if the IJVs are compressed), but can’t see enough to tell for sure, nor can you see the C1 processes…
I think that Mr. Kevin Smith, Otolaryngology Head & Neck Surgery Specialist, Auckland - https://headandneckservice.co.nz
does external surgery & is aware of IJV compression, would it be possible for you to get a referral to him & travel there?
Oh my goodness! Thank you for this! I have heaps of images. What are you looking for exactly when looking for the veins etc? I habe no idea what im looking at with them wow thank u for all this info. This is really really helpful to me. I will contact him!
Also are you aware of Dr naveed basheeth in palmerston north, new Zealand at all?
@Chrise - I added your question about Dr. Basheeth in one of your posts above & then found that we have a member who saw him for surgery. Here’s the link to the post:
wow thank u for all this info. This is really really helpful to me. I will contact him!
