Hi all, just looking for some help -
I’ve re-marked what I think are your styloids. You wouldn’t be able to see them through your jaw bone. My arrows point to very shadowy images so they may be hard for you to see.
@Isaiah_40_31Thankyou! Yes, very hard to see. Fingers crossed for new imaging today
Please let us know how your new images turn out. I hope your appointment today went well.
To me it looks like both white and yellow arrows point to the jaw, but I might be wrong.
I downloaded the scan onto my computer & could see a very faint shadowy image of what I think is the styloid process. As I stated, I’m not a doctor so can’t be sure. This x-ray doesn’t provide the best angle from which to see the styloid processes or stylo-hyoid ligaments if they’re calcified. I believe Weezie65 is working to get a CT scan which will provide a better view.
Hi @Isaiah_40_31, sorry, I have been off the grid dealing with a family issue. I did have another I-CAT 3D Xray done, I will upload a pic when I have it on my computer. Disappointingly, the Maxillofacial Surgeon, although seemed knowledgeable on ES, dismissed me like a crazy person who had been googling too much. He told me my styloid processes/ligaments were calcified but in his words “I’ve seen worse with patients presenting no symptoms”, what the heck is that supposed to mean??? He confirmed nothing wrong with my TMJ’s, he said that ES was beyond his scope and I needed to see an ENT. He did recommend I do physio, he felt ALL my symptoms were due to tense neck muscles (and in my head), which I feel is ridiculous, but then again I’m not a dr. just the person living with this every day. He again repeated he could not help me as it was beyond his “scope”. Strangely, he suggested I come back for a follow-up…a follow-up to what I don’t know (other than to get more $$$ out of me). Needless to say, I am disappointed but not surprised. I will need to wait for my new ENT referral and go from there. In the meantime, I will have a good look at the images I have and send the cd to Dr. Samji for review. I will post a pic as soon as I can. Thanks for all the support.
So sorry that you didn’t get any help from this doctor- but be encouraged that he said you do have calcification- by definition if you have symptoms & elongated styloids and/ or calcified ligaments then that is likely ES. As for saying that there are patients with worse calcification than you with no symptoms, it shows he’s not that knowledgeable about ES- you can have elongated SPs which don’t cause symptoms & then it isn’t by definition Eagles. Plus it’s not just the length of SPs which cause symptoms but can be the width & the angle too. I hope you’re able to get some help from another doctor…thinking of you, big hugs.
Hi Weezie65 -
I agree with everything Jules said. Clearly the maxillofacial doctor doesn’t know that people can have elongated styloids &/or calcified ligaments & be symptom free. It’s believed that only 4-10% of those w/ elongation/calcification actually have symptoms which is what makes us “different”. I’m sorry you fall into that small minority. I laughed at “all your symptoms are in your head” - clearly his knowledge of ES is very limited. If he’d said “all your symptoms are in your neck & in your head”, he would have been on target! Good to hear your TMJs are fine though. Sometimes even that area is symptomatic w/ ES w/o it actually being TMJ Dysfunction, & those symptoms leave w/ the styloid/calicfied ligament.
You have a great attitude, & I hope you hear something more positive from Dr. Samji when he reviews your information. I also hope the new ENT you see is kinder to you regarding your symptoms. A few people have been temporarily helped by PT but more often it aggravates the symptoms so just be careful if you choose to try that route.
I totally agree w/ your assessment of scheduling a follow-up w/ the maxillofacial guy - To what end?
Looking forward to seeing your new images when you get them posted.
Praying for you to make better progress toward ES resolution during your ENT appt. once you get your referral.
Thanks @Jules & @Isaiah_40_31 I’m not going the TP route, I believe that will aggravate the symptoms. I have suffered long enough, I don’t want to make things worse than they already are. Having said that, I’m wearing thin, and the symptoms are ramping up (is that how this goes?). I find over the last few days, I am so exhausted by mid-afternoon, I have to lay down or I’d fall down. I have always been able to muster through but can’t seem to these days; besides constant pain and dizziness, I now feel tired and worn out all the time.
ES does seem to get worse for no apparent reason at times…that is pretty common, & then can improve for no reason- lets hope that happens soon for you…vascular ES can cause tiredness, but obviously pain can wear you down, not sleeping because of it etc.
Physio did help me- all the muscles in my neck & shoulders were tense & I was given gentle stretches to loosen them, which really helped. But I definitely wouldn’t want to have been pulled about!
@Jules & @Isaiah_40_31, sorry I haven’t put my new scans up, to be quite honest I don’t know what I’m looking for on them and don’t want to post a bunch of irrelevant images. On a different note, I received a call from Lauren at Dr. Samji’s office; all my scans and reports are being overnight couriered to Dr. Samji, I hope to hear good news soon.
Your SPs are interestingly symmetrical - pretty thick in the top half & thinner & pretty pointed in the lower half (toward the jaw bone). They do look long to me. The good news is, it doesn’t appear to me that you have any calcification of your s-h ligaments.
I’d say you’re a candidate for surgery, but you’ll have to hear that from an ES surgeon. I think getting those spikes outta there will make a HUGE difference in how you feel! I hope Lauren/Dr. Samji gets back to you soon!
Glad you finally got a good look at what’s causing your symptoms!
Yes, they certainly do show your styloids! They are pretty long & spikey! I’m sure you’ll get some answers soon, good luck!
We hope for that for you as well!!
Just a quick update - I saw my GP yesterday for a follow-up, turns out the ENT he referred me to refused to take me on as a patient (?) so now I am waiting for a referral to a different one. He did put me back on Teva-Pregabalin to see if it will help with the pain, in the meantime, Dr. Samji has my scans and reports, I am hoping to hear from him soon. I also have a doctor friend of a family member trying to get me in to see an ENT in Vancouver; I feel a little guilty about going down all these avenues but after 4 years of suffering and being brushed off by so many doctors, I really need someone to listen. Still hopeful.
Hi Weezie65 -
It’s never wrong to tap into all available resources when you have unanswered medical questions. You are fortunate to have those resources & even more so that they are willing to act on your behalf.
I hope Dr. Samji responds soon so you have his opinion. It will be helpful when you see the ENT in Vancouver.
Don’t feel guilty, you have a problem which can be helped with surgery, do whatever you have to do to get that with a good doctor!
Hope it gets sorted soon & I’m sure that if this ENT doctor wouldn’t see you then that’s for the best, saves a wasted trip as they’d have been unlikely to help anyway!