Hi all, I just joined recently because I’m at my wit’s end haha. The nerve pain in my teeth and jaw has been worsening over time and reached a new high after an accident I had. I was going somewhat fast in my wheelchair and unbeknownst to me, my footplate bar was loose and snagged on something so I got flung out and hit the ground so hard my hands felt like they had numb holes in them. Somehow the only thing that hurt was the trigeminal neuralgia and feeling of my teeth falling out, despite them being perfectly fine.
Anyway, I waited a week after to finish finals and then went to the ER as advised by my doctor. They did a head and neck CTA, and I decided to try and see if I could estimate anything from it. I layered a few slices because mychart doesn’t allow me to download the dicom file. But my doctor dismissed it because the CTA came back normal, even when I mentioned a CTA doesn’t evaluate the jugular veins. A previous head-only CTV (was supposed to be head & neck but they ordered the wrong test) showed my right side IJV is dominant as well.
I have a consult with Dr. Patel in a few days to at least get some validation about my symptoms, so I was wondering if this is worth showing. I have some major issues with hypovolemic POTS and head pressure that happens when I try to hydrate, along with a whole other cluster of problems.
It won’t let me upload images, but I’ll see if it’ll let me after I post this.
So sorry @cheesebear! For some reason the system didn’t update your account after you posted. It’s fixed now so please try posting your pictures again.
I’m sorry to hear about your wheelchair accident and hope your pain is much reduced now. I look forward to seeing your imaging.
You did a great job combining your images. Your styloid looks like a bit like a lightning bolt! YOWCH! It looks like you may have slight jugular compression, too, but in that image, it isn’t a huge amount. I suspect with your chin more tucked &/or your head turned it could be much worse.
I’ve annotated your image. Is there any way you can get a copy of your full CT so you can convert the images into 3D from that? The radiology clinic where you had your imaging done should give you a CD that contains your CT images if you ask.
You certainly have an elongated styloid process! Have you tried any nerve pain meds, that might be worth a go, it sounds like your trigeminal nerve is being irritated, which is common with ES…
Thank you for that! I plan to ask but I’ve been so exhausted. I think part of me is scared even, but I know they wouldn’t care. I agree with you, I got a lot sicker after a job where I had to tuck my chin a lot. I wasn’t surprised about the first image, but I saw this other set related to my carotid and while I’m not sure if it’s as close as I think it is, it definitely made me a bit squeamish about my wheelchair accident.
I see Dr. Patel in 4 days so I might show him this as well.
I have tried gabapentin but it works until it doesn’t I feel like it just keeps getting worse, like within days the pain will start to ramp up more. I had to use so much capsaicin cream so the burning would override the pain, but it was hurting my skin so my doc had me try a lidocaine patch. I put it under my ear and while it helps a bit with the pain I still feel a lot of pressure. Nerve pain meds are challenging because my brain fog is so bad on its own.
I agree that your ICA looks close to your styloid though I’m not sure it’s being impacted by it. That’s something to ask a doctor about as your symptoms seem more related to your IJV compression.
Have you tried a prescription blood thinner, @cheesebear? Those suggested by some of our vES surgeons are Brilinta, Plavix or Xarelto though there are others. They can take several week to start helping but we’ve had a number of members who’ve had good reduction of IH & thus headaches while taking a blood thinner. They don’t help everyone though.
I’m sorry the topical things you’ve tried & Gabapentin haven’t been helpful. Some people do better w/ Amitriptyline as a nerve pain medication. You could also consider trying that.
Amitriptyline made me extremely mentally unwell. I tried it for my post-concussion syndrome in middle school and yeesh. I’m unsure about blood thinners because of my POTS but I completely forgot to ask.
Dr. Patel is having me try a lower dose of Diamox for IH first, and then a nerve block later. I think both are a test? When he palpated the area behind my tonsil to feel the styloid, I’m not sure what happened but I got a rush of blind rage and felt like I needed to attack his hand. I am so glad I stopped myself because biting a doctor’s fingers is quite frankly unhinged, but for some reason in that split second I felt like I was being strangled and couldn’t breathe. It just happened so much faster than I could think. I did show him the jugular slices, but I didn’t show him the ICA part because I felt maybe it was best to leave it to him to look. He does look at your imaging itself too, not just the report.
I think he’s one of the most supportive doctors I’ve ever met, and clearly detail-oriented. I’m used to doctors shrugging off the smaller things they don’t think matter, so it was a breath of fresh air.
I’m glad that Dr Patel was supportive and obviously listened to you… weird how you felt when he touched the styloid, good job you didn’t bite him, a surgeon’s hands being so precious
Hope that the diamox helps !
Sounds like maybe Dr. Patel poked your vagus nerve which is what caused your temporary emotional “unhinging”. I’m also glad you had the presence of mind not to bite him, but if you had, you could have simply passed it off as a reflexive response.
Sadly it doesn’t seem to be getting better. Here are the slices I combined, although I know it’s not as good as a 3d model.
I feel like it just keeps getting worse, like within days the pain will start to ramp up more. I had to use so much capsaicin cream so the burning would override the pain, but it was hurting my skin so my doc had me try a lidocaine patch. I put it under my ear and while it helps a bit with the pain I still feel a lot of pressure. Nerve pain meds are challenging because my brain fog is so bad on its own.
