I just had an initial appointment with Mr Hughes but have of course since thought of several more things I should have spoken to him about - my brain works slower these days!
He said I have elongated styloid process, certainly on the right but he couldn’t see the left side properly from the screenshot images I sent (this is from cone beam scan done by dentist). The dentist had said my ligaments are calcified and Mr Hughes said if they are he will remove them. Is this just decided during the op, like he just has a look in there to see if they are and then whips them out if needed?
Mr Hughes suggested some of my symptoms don’t sound like Eagle Syndrome (which is a definite possibility as I have other health issues going on). If I list the ones he said are doubtful please will someone tell me if they can be associated with Eagles? Severe head pressure, brain fog, fatigue, facial muscle twitching (upper lip, eye) and other muscle twitching eg down arms, bottom of ribs, severe spinal accessory nerve damage causing right sided arm disability. The fatigue and head pressure/brain fog are the things that affect my life the most so if it’s not due to Eagles I need to decide if the op will be worth it.
Lastly, he suggested that if we want to find out for sure whether I am getting vascular constriction we could do a CT scan with dye. He did say he could operate without this, and that the scan would be largely to help me to decide whether or not to go ahead with the op I think. Since I am wary of the extra radiation and also the dye (I suffer from mast cell activation) I am not sure how much this would be needed, given my symptoms. Other symptoms I get are constant tinnitus and a lot of dizziness, especially when I look down.
It seems such a huge decision! I am desperate to feel better but don’t want to go through this potentially risky op if my symptoms are largely due to worsening of mast cell activation, rather than to Eagles Syndrome. Although, having aid that, I have been doing loads to try to heal the MCAS and am wondering whether the styloid process could be preventing healing by aggravating my vagus nerve. It sounds plausible I think!
Sorry this is long, I hope someone can offer advice or insights!
Many doctors & radiologists refer to ES as stylohyoid ligament calcification as opposed to styloid process elongation. It’s a bit confusing as the stylohyoid ligaments runs from the tip of the styloids down to the lesser horns of the hyoid bone & the styloid process usually elongates along the route of the s-h ligament. There are times when the styloid elongates apart from the s-h ligament & times when the s-h ligament calcifies apart from causing styloid elongation (i.e. the ligament calcifies from the hyoid up toward the styloid rather than from the tip of the styloid down). There are also cases where the styloid elongates then there’s a gap of normal s-h ligament & then a section of calcified ligament. A cone beam scan is definitely not optimal for determining what form of calcification & how much calcification you have. A CT scan is best for that.
Many of the symptoms you mentioned that Mr. Hughes suggested might not be related to ES absolutely can be related i.e. head pressure, brain fog, fatigue, dizziness, constant tinnitus - cause can be internal jugular vein compression, facial twitching - irritated facial nerve, & other muscle twitching + down arm, as well as the arm disability, can come from spinal accessory nerve irritation.
The contrast used in CT scans is iodine based so it doesn’t hang around in the body like gadolinium which is used in MRI scans. I can’t speak to weather your MCAS symptoms would flare from the iodine but there may be info online about that.
I would suspect ES as the cause of your worsening symptoms before MCAS, but honestly, the two together may be making things worse all round.
Thank you so much, this is all very useful.
Apparently I do have the styloid elongation (as well as calcification of the upper ligament); that was certainly visible on the cone beam scan. So from that point of view Dr Hughes is willing to operate, I am just not sure whether it is necessary to know the extent in advance, or whether he can just open me up and decide how much to remove once in there!
One more thing; if there is vascular involvement does the ligament/styloid removal normally fix that? I have read of people needing venous stents etc. And at what stage would the stent be done, can it be done at the same time as the styloid removal or is it a totally separate operation?
I had bilateral IJV compression which caused head & ear pressure, a constant off-balance feeling as well as some horrible dizzy spells, pulsatile tinnitus, brain fog & tiredness… This was diagnosed with a CT with contrast, after a panoramic x-ray showed elongated styloids. Mr Axon removed the styloids back to skull base, as the IJVs were being compressed quite high up. I had put off surgery initially when I was just getting nerve pain, but when I started getting vascular symptoms & was feeling so rotten it made the decision to have surgery alot easier. So it is nice to know what you’re dealing with in that respect, if the contrast used with a CT doesn’t affect your health?
Re the stent, Mr Hughes isn’t a vascular surgeon so wouldn’t be able to do that or venoplasty to re-open the jugular vein if it doesn’t re-open during surgery. I was told that I could have a stent later if needed but there are risks with that & the stents can cause pain, but wasn’t needed for me, I felt lots better after the surgery. Stents aren’t always needed.
Unfortunately nobody can say exactly what symptoms will be helped by the surgery, but equally we don’t know what inflammation the styloids are causing while they’re in, and possibly aggravating your MCAS? It’s tricky, I wish we could give you an answer one way or another, but praying you make the best decision, & sending you a hug
Thank you for your reply, that’s extremely helpful. Glad to hear your symptoms resolved after the operation too!
And thanks for the hug - very much needed!