Indeed. I was very fortunate to be diagnosed so quickly & you’re right, some of the stories on here are just heartbreaking. I can’t imagine 20 yrs of symptoms before getting diagnosed. 
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I had a similar experience to @Isaiah_40_31 , I had tooth pain & then a blocked salivary gland, was referred to a max fac clinic & had a panoramic x-ray, where a doctor spotted the styloids! On reflection I’d had symptoms for a while but put them down to an old whiplash injury & wisdom tooth pain, hadn’t ever sought any answers from doctors, so it was only probably 6 months of worse pain before diagnosis. I do feel so very lucky reading others’ stories on here, and feel so much for all of you who have such an awful time 
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Good morning @Isaiah_40_31 and all. I took a gamble and sent last Novembers scans and reports plus this August’s MRI report (can only send one scan per application I think). Anyway it was not a lot of money and you get a 10 minute video tutorial which the radiologist goes through pointing out stuff. It is stressed that they do not diagnose but it’s more to help you understand the findings.
Well, the scans I had done last November - the one where styloids weren’t mentioned in the CT report? Well it seems that oedema at C1 and c2 was present then and also missed!
So far from this being a new finding in August 24’s MRI, it was in the previous one. He pointed out that inflammation at that level usually causes significant pain and I’ve been suffering for so long and still something is missed. Who are these people accountable to? It’s heartbreaking that I know I’m not the only one.
Day 13 of Co amoxclav and throat settled down, ear pain gone so that side has worked which shows the c1/2 inflammation unlikely due to infection. I can palpate my left styloid where throat infection starts and wonder ?? Could the irritation and inflammation there be the cause of repeated infection or is this a red herring? My ENT appts have quietly dropped ES from the diagnosis- swayed by JH flawed reports?
Do the wait goes on ……
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which service did you use? I may do this as well.
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Well, I’m glad that it wasn’t a waste of money, but incredibly frustrating that you have all this inflammation and no nearer the cause…apart from possibly due to ES obviously! I guess if the radiology company don’t diagnose , they didn’t give any ideas what could be causing the oedema?
I can’t remember, have you had your tonsils out? I just wondered if you’ve had them removed if maybe there’s some residual tissue still causing infection? Here’s a link to some info:
Peritonsillar abscess after tonsillectomy: a review of the literature - PMC
Another cause of oedema in the neck area (I think you mentioned maybe arthritis in your neck?):
How Serious Is Bone Marrow Edema?
But certainly the recurrent infection really should be looked into, I can’t believe your ENT hasn’t been investigating that! I found this paper which looks like it was written by UK authors about managing deep space infections, I don’t know if it’s at all helpful:
The assessment and management of deep neck space infections in adults: A systematic review and qualitative evidence synthesis - Sheikh - 2023 - Clinical Otolaryngology - Wiley Online Library
Sending you more hugs @Mcwelly
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Hi @Jules
Yes my tonsils were removed over 60 years ago as was the fashion then! I have been telling drs how the left side appears to have some tonsil tissue which was never there before but they look at me as if I’m mad! Pressing the back of the throat there produces a small ooze of pus which has resolved after nearly 2 weeks of ABs. I’m told no infection was found and I explicitly asked about the masticator space but told they would have been looked at. I don’t feel so reassured given two major “misses “ in last year’s reports! If consultants only look at reports and reports have omissions then things are missed!
The night sweats have never been explained nor the extreme fatigue but one dr asked me if I’d ever suffered with psoriasis, I haven’t but wondered why the question? Looking at something auto immune perhaps?
I hope GP can expedite an appt re oedema and meanwhile if and when throat flares up again, I will go straight to the consultant to get the source found (I hope). The fibromyalgia is nonsense and not worth considering!
I still think that ES doesn’t want to be confirmed as they don’t want to refer or treat due to my age, sad but true!
Hugs to you all xx
I
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What a travesty that you’ve gotten such a run around for so long & improper diagnoses to go with that. I hope/pray that the next doctor you see will listen & take interest in your recurrent throat infections & other symptoms & the things missed on your scans in the past INCLUDING your elongated styloids!! Time for the chase to end & for you to get the help you need & deserve, @Mcwelly!
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I’m glad the antibiotics have helped for now, & hopefully it won’t re-occur 
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Me too @Jules! I’m doubtful as this was the 28th course in 4 years! I did a private blood test, low lymphocytes and high ish MCH despite B12 injections ……
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On yet another course of ABs! Just posted on an old post re hamular bone but not sure where it is! Another year of misery… and it’s hard to find any hope.
Ps, stopped steroid inhaler and throat slightly better but I’m now low on vit d, that can’t have happened overnight but only just tested x
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I replied to that, I’m so sorry that you’re still in pain 
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Thank you @Jules xx
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So frustrating for you to be running in circles, @Mcwelly, and continuing to be sick! I continue to be disappointed in Mr. Hughes for dropping your case the way he did. It just doesn’t seem right. I recall you were considering trying to see him again to make an appeal. Were you able to start that process?
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Hi @Isaiah_40_31 - no I have been too ill and in pain to continue to chase someone who doesn’t reply. The other confounding factor is the inflammation of c1/2 which was apparent on last year’s mri but not reported. My GP, at my request, asked for the 2 MRIs to be compared but sadly the radiologist compared the mri of august with ct of last year, not the same thing, not comparing the two MRIs, not only that, was same person who omitted stuff in both scans last year.
It’s beyond a joke
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@Mcwelly - I know you feel awful, but I would DEMAND that the correct scans be compared whether you need to demand that of your GP or of the radiologist himself. It’s critical to your forward progress that the radiologist do his job correctly! I’m furious about what you’ve gone through & would call the fellow myself on your behalf, but I imagine I wouldn’t get very far since I don’t know you personally. If you have a family member who can go to bat for you, that would be fantastic. Keep pushing. Confront incompetence!!
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Thank you @Isaiah_40_31 - I won’t say too much at the moment as I wonder if any drs lurk on here!! Another week of antibiotics and today had cbct and my dental surgeon will phone me back…… he felt the lump - not in my head haha, in my skull yes! I’ll post again soon but happy Christmas to you all xx🎅
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Hope the antibiotics kick in soon, and hope the cbct shows something helpful!
Thinking of you
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