Hello everyone, just wanted to introduce myself and ask for advice on some symptoms.
I started to have symptoms back in 2019 when I had a prolapsed disc in my lower back. Because of this I started lying down on my back with just my head up so I could carry on working on my laptop (I work from home). I didn’t expect to have to do this for as long as I did, but 2 months later I was lying in this position talking on FaceTime when something popped in the hyoid bone area of my neck on the right. I couldn’t breathe for a second, got up quickly, started breathing again and then decided I would never sit like that ever again. After that, weird symptoms started like I had a bit less resistance in my nose, like it was too open and because of that I couldn’t regulate my breathing leading to lots of random hyperventilation. I also had bad headaches, burning sensations in my neck and a choking feeling around my hyoid, constant grinding noises from it, popping noises in my nose and throat, sometimes a sensation of breathing in water through my nose and double/distorted vision. At this time, I convinced myself I had CCI/AAI but no one would listen and I ended up saving up and having scans at Medserena in London. These came back negative for CCI/AAI but I wasn’t happy that my Grabb Oakes measurement was 8.1 which is very borderline. I then started to read about Eagle Syndrome and have been trying and failing to get any support on this until today when the doctor said he would refer me to Dr Jonathan Hughes through the NHS, although because I live in Essex I’m not sure whether this will go through (doctor was also uncertain but said he’d try). So thats where I’m up to now, if anyone can advise if they’ve had similar symptoms that would be really helpful.
@Skatkat welcome to the forum
I am so sorry that you are going through these painful issues.
I am also so proud of you for continuing to look for answers to what happened and how get things back to normal . It can be so overwhelming at times.
What types of scans did you have done for CCI evaluation?
I do hope you can find some help and advice here.
Wishing you all the best, sending some healing energy your way
@Skatkat - our member, @PatientD has posted a lot of information regarding her CCI & vascular ES surgeries. You can search for her posts using the magnifying glass icon in the upper right. She has seen both Mr Jake Timothy & Mr Jonathan Hughes for her surgeries.
You used to be able to ask for a referral to a doctor in another area on the NHS no problem, not sure if that’s changed? I’m in Suffolk & was referred to Mr Axon in Cambridge through the NHS but that was 8 years ago… Getting a CT would be helpful but not sure if your GP can refer you for that.
There’s some info in this discussion which might be helpful about the CCI: Still here, still with the same swallowing issues, looks like I may have CCI, likely ruptured transverse ligament. Severe Jugular vein compression - Symptoms and Treatments - Living with Eagle
It does sound as if it could be hyoid related from your symptoms, or possibly calcified stylo-hyoid ligaments, that often causes a popping sensation and choking feeling. The vagus nerve can be irritated by the styloids and ligaments and can cause anxiety, breathing and heart rate issues…
Hope that you can get that referral to Mr Hughes
Thank you, I’m really hoping I can see Mr Hughes because the local ENT I saw didn’t really know much about Eagle or the hyoid bone. If I can’t see him through the NHS I’ll try to see him privately.
Hi and keep hope! I’m seeing mr Hughes late October and it’s private as after nearly 4 years of seeing various specialists in the nhs and massively long waits, I felt I had no choice, plus I’m in Dorset.
GPs cannot refer for mri or ct scans directly, only a consultant can and when I asked for ct with contrast of an NHS consultant, this was refused. I hope you have more luck and can keep pushing for answers
Thank you, I think I’ll go private if I don’t get any luck through the NHS. No one in Essex will take me seriously, several doctors have even had to google it and then told me it’s so rare it’s unlikely I’ll have it. It just feels like a huge fight for diagnosis when a simple CT scan would confirm either way and get me off their backs.
I totally agree @Skatkat! How hard is it to refer a patient for a diagnostic scan?! It’s also infuriating to be told, “It’s so rare, you don’t have it.” How can any doctor make that judgment w/o evidence showing the claim to be true?!?!
Exactly, I get so angry when they say that. Even if it is rare, someone has to have it otherwise it wouldn’t exist. I wish they could just have a day in my life with all the symptoms, then they would understand.
I’ve said a similar thing many times - If the doctors who are dismissing our symptoms or saying ES is too rare for us to have it were to suffer from ES symptoms, they’d soon be singing a different tune!
Had my scan today, waiting for the results. We don’t always get images in the UK but I’ve been told these will be uploaded online, so will hopefully be able to post them once I have them. Dr Hughes isn’t sure about Eagle syndrome for me, but wanted to check to rule it out. Might be something else like “posturing” with the jaw (I keep pushing my lower jaw forward, usually when concentrating or stressed) or tongue thrust (I’ve noticed I also push my tongue forward when swallowing).
It would be great if your symptoms are caused by jaw/tongue habits which can be retrained via PT. We’ll look forward to hearing/seeing scan results & possibly scans. @Skatkat.
Some pics of my “discontinuous ossification” of the stylohyoid ligament, there are more but I can’t download the scan to get them all off. I think I’m highlighting the correct bits, but feel free to correct me if I’m wrong.
Had a follow up with Dr Hughes and agreed to monitor this for now, since I’m coping a bit more with the symptoms, but he did say I could have the surgery if I wanted.
Has anyone tried magnesium or vitamin K to reabsorb the calcium or does this not really work?
Yes, it looks like you’ve highlighted calcifications…as far as I’m aware it’s not possible for the body to reabsorb calcium, once a calcification is there it won’t go away.
I’m glad your symptoms are manageable for now, and that Mr Hughes will help if needed, that’s good!
The topic of Vit. K has come up before & I agree w/ @Jules that it won’t “dissolve” & help the body reabsorb a solid chunk of calcium such as those on your stylohyoid ligament.
It does make me wonder whether the opposite is true though. I was on a high vitamin D dose in the last 6 months of 2022 though. Vitamin D increases absorption of calcium ions so possibly could increase rate of calcification? Has anyone discussed that as a possibility previously?
Thanks @Jules! I was on 3200 IUs, or 75 ug tablets for 6 months. Id had recurrent nose stuffiness and before sending me to the ENT my GP decided to do a random blood test just to see how things were. Found I was severely deficient in vitamin D. Honestly even though I’ll never know, if that is the reason for all this trouble I am going to be so annoyed!
