One of the believed causes of ES is metabolic disorders, for example we’ve had a few members who have had issues with vit D & calcium, parathyroid disorders & Hypercalcaemia, which could maybe cause bone spurs and other calcium deposits. So maybe this could be something to look into, do you have bone spurs anywhere?
Hi Blodyn,
Jules reply is better than any I would have given. It’s really unknown why the pterygoid hamulus bones “elongate”. We’ve had only a handful (or less) of members who’ve had PH bursitis along w/ ES so it’s not a common combination. The PH bones can be shaved to reduce their size & that is often helpful, but as always, one needs to see someone who’s experienced w/ surgeries of that sort to bet the best results. We did have one member who had both the PH bones resected at the same time as her styloids were removed. She lived in Canada & went to a doctor (dentist) in Mexico for lack of help in her own country. Sadly she had many other health issues & has passed away so we don’t know if her surgery made any difference.
Hi Jules,
Thanks very much for your reply. I’ve never been aware of having issues with Vit.D Ca, parathyroid. hypercalcaemia. I’ve had the auto-immune disease rheumatoid arthritis for nearly 25 years & been on strong medication for that throughout, though had blips & the worst thru 2021 when drugs failed & inflammation went barmy & had affected my body hugely. I have a couple of small nodules on fingers & bursitis on both elbows due to the RA, but perhaps more has gone on inside with calcification than I realise. I have been tested for thyroid several times over the last few years & take Vit D, but not Calcium. Thanks for answering. You’re so helpful and knowledgeable, it’s worth asking your opinion. I half wondered if a trauma (I’ve had a couple in the past like whiplash) could have shifted the pterygoid one side and the styloid the other, but who knows. Really hoping to get a CT scan to show the situation. THANKS.
Hi Isaiah,
Thanks so much for your answer. It’s a bit of a mystery then. Jules made good points, though doesn’t seem those causes are likely as those things seem OK with me, even though I have rheumatoid arthritis & some other bursitis. The more prominent PH bone on the left side isn’t really bothering me, but it is definitely bigger than the other. It’s the styloid/ES on the right side that seems to be causing the most issues. I’ll mention the PH as well, when I eventually get seen again & hope for a CT scan to show if ES anyway. Very sorry to hear of the lady in Canada. Thanks again anyway.
Good morning, I’m replying to this old post but wonder if anyone will still be reading or following it? I won’t go into old stuff yet again, just to say, still suffering greatly with the almost unbearable pain constant. ENT said, not an ENT problem, dentist said not a dental problem, max fax said if it involves throat, not a max fax problem. To cut this long story short, I’ve been moaning about the upper left part of my mouth, the corner where is almost becomes the soft palette and find this is the pterygoid plate. I have a soft, mobile fluidy lump there, you can’t see it, only feel it by rolling my tongue or finger over it. Consultant wouldn’t even examine the area and looked at a 6 mth old mri of neck and said - “I can’t see anything”. I’ve found slight relief in applying lignocaine gel and near Clive bud oil to the area. I’m on opiates for horrendous pain and still waiting for spinal opinion as to cause of persisting oedema at c1/2. I’m on antibiotics yet again and my vit d is low now. Rigors and night sweats continue and I feel ill, not just pain but like flu that never goes. Could this hamular thing have anything to do with anything or just another rabbit hole for me to jump into? Thank you.
Oh, no, poor you, more antibiotics? I’m so sorry that this is ongoing and that you’ve been ‘passed around’ so much…beyond frustrating that you’re still searching for answers…thinking of you
Hi my pain gradually faded away. I still suffer with the styloids though. Maybe surgery in the new year.
@Mcwelly - What you’re feeling is in the area of the pterygoid hamulus bone, but it sounds more like a cyst than excessive growth of the PH as that creates a hard immobile growth in the area where you have a soft, mobile, fluidy lump. That said, if your PH has extra bone, the cyst could be a protective measure on your body’s part. I would think a dentist or an oral surgeon could do some type of x-ray, CBCT or order an MRI to check the roof of your mouth to see what’s going on.
I’m so sorry for your pain, for more antibiotics & your very extended suffering. Wish there was more I could to help you!
Merry Christmas @Isaiah_40_31 - quick question: I have had another cone beam cut at dentist - again dental stuff ruled out - I put the usb into the laptop and downloaded radiant again but there is no 3d option in the task bar at the top. Any help?
Now have an ear infection- course 30 of ABs
I’m sorry about your ear infx & especially that you have to face another round of antibiotics when it seems you’ve just finished taking them.
It would be good for you to be able to see your CBCT in 3D, but I’m sorry I haven’t used Radiant so I don’t know how it works. @vdm posted a link to a tutorial for Radiant that might be helpful:
Thank you @Isaiah_40_31. I found it too difficult to follow the tutorial to be honest. The Radiant trial programme chucks me off after 10 minutes, nowhere is that long enough to do anything much.
Incidentally, from my ct last year - the mastoids were described as no significant effusion. Does this mean there is some or even that some is normal? Here’s a screenshot: many thanks
I just saw an old post of yours which indicates you have a Mac computer (so do I). Radiant is for PCs. Try the Bee Dicom Viewer App for Mac as that will definitely work better for you to create 3D images. Bee DICOM Viewer on the Mac App Store
I’m sorry I didn’t double check that before referring you to Radiant. I don’t know what I’m looking at in your screen shot so can’t comment. I feel terrible that I’m not being more helpful, @Mcwelly! Maybe I should take a course in reading CT scans & MRIs. It would make sense with the number of images that are posted on this forum!
I wish for you to get a proper diagnosis & treatment in 2025 so your health can be restored. You’ve been searching without answers for far too long.
I think the same as @Isaiah_40_31 , but comparing the 2 images, there’s quite a difference in the (presumably fluid?) dark spaces either side by your ears, the right side looks a lot larger, so I’m guessing that’s what the report is referring to? I’m rubbish with tech too, so sorry I can’t label it, but might be worth comparing your image to other images online?
Yes I do have a pc and Radiant - I had my scans on usb and cd so that but was easy. I tend to use my phone rest of time.
2024 is ending and good riddance to it but for me, 2025 is starting with my being ill in bed, yet again on antibiotics and still no answers. Headaches are 24/7 and brutal, no help in Dorset.
I wish you all the best wishes for 2015 and for those suffering to get help swiftly and not suffer xx
@Mcwelly I’m so sorry that you’re ill again, praying that 2025 will be better for you
Referred to neurosurgeon another hospital and recent re evaluation of scans by another radiologist says, massive styloids and ES. Feeling somewhat vindicated but a long way to go……. Happy 2025 not 2015 as I wrote drr!
Well, that’s something positive at last for you, a big step forward! How did you get the scans re-evaluated, did you pay privately?
Hi @Jules - no - my case was discussed at an MDT and a different radiologist was involved and knowledgeable about ES and as they don’t see it too often, I guess everyone was interested in what he had to say! Just shows how opinions vary between mildly elongated to significantly and massive!
From what I remember of your images, I’d go more with ‘massive’!! So pleased that someone with a bit more knowledge has looked at them, and raying it leads to proper treatment for you at last
- That’s me doing a happy dance for you, @Mcwelly! Our prayers have been answered & so has your perseverance paid off!! Such GREAT NEWS!!
It would be great if the new neurosurgeon is also familiar w/ ES & experienced w/ the surgery so you don’t have to keep fooling around w/ doctors who have denied you that benefit.
VERY HAPPY New Year to you, too!!