((( My heart goes out to you…
Hang in there, you’re getting closer to treatment with Mr Hughes
@Mcwelly - It’s so frustrating to know yourself & what’s normal & what’s not & be doubted when you try to advocate for your self. I’m glad Mr. Hughes ordered the MRI but disappointing that the NHS denied the CT w/ contrast. That’s really terrible!
I hope the MRI results give important information that will help diagnose the cause(s) of your many symptoms. You’ve been suffering for quite awhile now and it’s time for you to be taken care of.
Do you have a follow-up appt. w/ Mr. Hughes to learn the MRI results? I posted on another topic that I thought you had an appt pending with him, but may be mistaken.
I’m sending you a gentle, healing hug and praying for you to get the help you need very soon.
Thank you so much @ Isaiah_40_31, yes frustrating is an understatement, I’ve had so many diagnoses and even the max fax and ENT people can’t agree but what is soul destroying here now, are the long long waits for NHS appointments.
I had MRIs from top of head to top of chest as well as CT with contrast of cervical spine so Mr Hughes can look at all possibilities so I will get a phone consultation when he has the results. I’ve also requested copies of my scans so . A peaceful Sunday to you all xx
my scans did not even mention the styloids so I’m not sure what I’ve paid for! Mr Hughes estimated that the left is 37mm and the right is 42mm long - not elongated in his opinion. He focused on degenerative changes of c4-7 and said I needed a spinal opinion.
I’ll try and get my scans downloaded and post some images on here but I’m no further forward, just a whole lot poorer and very fed up.
Oh and just to top it all, my FBC was not tested due to sample being too old! No retest requested, just filed away as satisfactory (what???). Am I jinxed!
WOW!! That’s very unexpected coming from Mr. Hughes! Those styloid lengths are definitely elongated. I wonder why he was dismissive? He’s been helpful for other members who, I’m fairly certain, didn’t have styloids significantly longer than yours. Did you question him about that i.e. noting that it’s your understanding that anything beyond 30 mm is considered styloid elongation & ask why he didn’t consider yours elongated at 37mm & 42 mm?
I know doctors can be intimidating but we MUST pull up our boot straps & be strong self-advocates. It can also help to take a family member or friend with you to help be your voice in the event yours fails. Taking a list of questions is also helpful, but I know this advice is all coming after the fact, & I’m sorry.
Perhaps seeing someone for the spinal opinion & discussing the styloids while there could get you referred back to Mr. Hughes for a second opinion. Mr. Obholzer has also come up as an experienced ES surgeon. Perhaps you could try him for a second opinion. This has been a wild goose chase for you & so frustrating. I’m so sorry, but I will be praying for you to find a doctor who is willing to help.
Thank you @Isaiah_40_31, yes I felt that Mr Hughes was dismissive and as my consultation was by phone and on a Friday evening, particularly brief. I hate to say this but at 68, I don’t think he wanted such an old candidate, particularly one with cervical spine issues too?
I’ve emailed the radiology department asking why styloids are not mentioned nor reported on as this was the very reason for having CT w/c! They also had access to the previous CT w/o contrast, which first raised the possibility of ES.
I will get my scans downloaded as I asked for copies which I have on disc and digitally. Unfortunately iPad and iPhone are not suitable so need PC.
Where is Mr Obholzer? Have a warm and happy weekend x
Think Mr O practices at One Welbeck in London (private). Think Mr Hughes said he knows him at Cleveland too? Not sure about NHS but no doubt long wait. D
Hi @Leah, yes I’ve got copies and will try and download and then upload some on the forum. For information: my phone consult lasted precisely 12 minutes, that shows how much interest and interaction there was, I’m upset and also angry to be honest
Sorry consult was so bad. I do try to avoid telephone consults as F2F does often help improve outcomes (but not always). Can be tricky to travel when unwell. Maybe a letter to explain your concerns about scan & then consult is worth trying?
Beyond frustrating! I’m so sorry that you were dismissed like that, especially when you paid for the appt! If you have the energy, it’s worth trying a complaint about the radiology report,& maybe even Mr Hughes, although it won’t necessarily get you any where, it might make you feel a bit better about it…I can only guess that maybe Mr Hughes saw more issues with your Cspine & thought that the surgery might complicate that, & perhaps not help as much as surgery usually would for ES, so he didn’t want to go there? By any stretch of the imagination those styloid lengths are long!
I wonder if the steroid/ lignocaine injections would help at all for you while you try to get some answers, if you could find someone to do those on the NHS?
Sending you a hug
The CD images are on Weasis and I’ve can’t find a way to rotate them, let alone find out how to view in 3D!
@McWelly - I sympathize, too, w/ the issue of seeing your images on an iPad/iPhone. I’m also a Mac user. If you can upload them to a computer then upload them to dicomlibrary.com, that would be helpful for you to see 3D images, though I’m not just sure how to maniputlate images on Dicom Library either. I tried w/ mine but had to have help.
12 min. for a consult is outrageous when you’ve paid out of pocket!! Definitely worth a complaint. Though I agree w/ the angle @Jules suggested (C-spine issues are worse than potential ES), Mr. Hughes owed it to you to communicate that if it was what he was thinking.
Your styloid is very thick, but in this image, it looks like there’s a decent amount of space between your styloid & C-1. That could just be due to the angle of the imaging though. If both your styloids are that thick, it’s no wonder you’re having pain! I’m very sorry Mr. Hughes was so dismissive. I hope the radiology lab provides you with more information you can use to “do battle” with whomever you see going forward.