I have 9 more days until I see Hughes, but I’m so unwell, I need reassurance please. I have nowhere to go… my GP isn’t interest, A&E can’t help.
I have been housebound a while now due to tunnel vision, derealization, dizziness, balance issues amongst other symptoms. I am struggling to work from home and look after my children.
The dizziness is so bad now I can’t walk around for more than 5 minutes without lying down. I feel terrible and I don’t know what to do.
I’ve had a 3d CBCT scan, MRI & CT (both non contrast). My GP won’t do no a private referral for a CT contrast, as I had a regular CT in a&e last week.
I spending every day crying unable to function.
Is this really normal? Am I going to be OK? Is there anything I can do?
I’m sorry that you’re feeling so awful, it’s tough especially when you have children to look after & are trying to work still, I can’t imagine that! Your styloids are really long, looks there might be calcification of the stylo-hyoid ligament too in your second image, although sometimes the styloids can grow like that with little sort of joints in them.
Of course it isn’t normal to feel this unwell, but ES isn’t normal; there are so many nerve and major blood vessels in that area of the neck that elongated, thick or angled styloids can cause a myriad of symptoms, and I don’t understand why doctors don’t recognise that! Sadly we have had quite a few members whose symptoms have been so bad they’ve been virtually bed bound…it does sound as if your symptoms could be vascular ES so it’s a shame that you couldn’t get a CT with contrast, but hopefully Mr Hughes will help you & get one organised.
Hopefully Mr Hughes will help you, and looking at the size of those styloids I can’t imagine that getting rid of them won’t ease at least some of your symptoms. If you have jugular compression sleeping propped up a bit can help, and some members have improved by taking blood thinners. It’s hard to know definitely if it’s jugular compression causing problems without a scan to see what’s going on; compression or irritation of the carotid arteries can cause dizziness and fainting too, but sometimes the dizziness can be irritation of the vestibulocochlear nerve. We’ve also had several members who have Superior Canal Dehiscence Syndrome, a problem with the tiny bones in the ear, which could possibly be caused by high intracranial pressure- common with jugular compression…
Can you take some time off work, at least until you’ve seen Mr Hughes? It won’t help how you’re feeling but would at least be one less stress (which if you do have jugular compression and high intracranial pressure, extra stress will just add to that) Have you got anyone at home to help you? Medically other than trying blood thinners there’s not much else I can think of to help- if you do have high intracranial pressure a lumbar puncture to draw off some CSF can sometimes help, but there are risks with this, and if there is still pressure on the jugular veins then it could well build again…
Thinking of you & sending you a hug, it is grim
I’m also sorry to read about how poorly you’re feeling while trying to keep up a job & parenting. Lots of stress there & as @Jules noted, the extra stress can make your symptoms worse.
I’ve annotated your second image to show what looks like additional stylohyoid ligament calcification rising from your hyoid bone. This make a sort of double whammy with your left styloid being so long & some additional calcification lower down. Are your symptoms worse on the left side? Your right styloid is shorter but thicker & thickness can also cause BIG problems. You definitely have a case that Mr. Hughes should be interested in.
I hope he’s very helpful for you & that some of the suggestions Jules has offered are helpful.
