Hi everyone,
I hope you are doing OK with your ES journey.
I was just wanting to check about a symptom. I have been getting the odd stabbing pains in my right temple, kind of feels like an ice pick headache. I have had a full styloidectomy but this hasn’t really fixed the venous outflow issue. I am guess I just wanted to see if this symptom was congruent the experience of Vascular ES.
Can anyone relate?
Cheers,
Ryan
Hi Ryan,
Any possibility you have an elongated styloid or calcified ligament on the left side? I know you had your surgery not too long ago, but if the styloid wasn’t fully removed to the skull base, there is the possibility of regrowth. I’d be surprised if it would happen this fast, but it might be worth it to get a follow-up CT scan to see what’s going on especially if you’re vascular symptoms don’t seem to be subsiding at least partially.
I do know that vascular symptoms are sometimes slow to mend especially if the vessels have been compressed for some time. Please remind me how long it’s been since your surgery.
Here’s hoping it’s just a matter of a bit more healing time needed.
Yes I get those and also a thunderclap similar one on the top of my head. Kinda takes the breath away when it happens.
I haven’t had that myself, but could it be nerve pain? Maybe trying a nerve pain medication might help it, like Gabapentin, Amitriptyline etc.?
I will check out those medications thanks @Jules!
I can relate, I also have that stabbing pain in my temple and the thunder clap. I am on the highest dose of Gabapentin and Amitriptyline, so I hope that would work for you. I hope time will heal all these symptoms for you all.
I am wondering about scar tissue where the ES surgery was done. It feels thick in there. Does anyone have that? My ES surgery was done April 7, 2017. Just wondering.
Thank you for all of your support through this difficult process.
Have you tried massaging your neck to keep scar tissue at bay; if things are starting to tighten, it might help. Hope that you see some improvements, Patti, and that you’re able to reduce the medications. (I’m still taking a low dose of amitriptyline for nerve pain; it is better than before the op, but not completely gone).
Sorry you are having the problem. I was fine 2 months after surgery but started having pain. First it was like first bite syndrome then to biting inside of my jaw, and pain and spasm. The surgeon changes information with each visit. I understand TMJ and face pain can occur after surgery due to nerve and muscle issues. I am meeting with the head of the dental at Baylor Scott & White in Temple, TX because they think it might be TMJ, (I think it’s from the surgery). I don’t have my hopes up, I just know I feel better without the styloid! Good-luck my friend!
I had same . I have had my surgery but was also referred to a head and neck physio before and after. She is amazing and has provided me with a lot of relief. I have also learnt a lot about how we compensate with other muscles with movements like yawning etc that have hurt in the past.( i can yawn no worries now lol) I feel great now and have next to no issues. So many muscles in the face and head that get affected and we dont realise they need attention to finish off the process. Good luck
Thank you for the tips. I really appreciate it. I was wondering about PT because they know the jaw/facial muscles more. When I try to massage it it actually makes the pain worse in my lower jaw and cheek on the outside of my face to my lips and tongue. Does anyone have that, where if you touch the skin on the outside of your cheek/jawbone/chin area it shoots nerve pains to the teeth? Am I crazy? Just kidding. Thank you for all of your support here.
You’re not crazy, but you have crazy nerves!! 
I hope you’re able to get some PT or other therapy soon to help resolve your nerve pain!
I have it too. I can pinpoint the pain on top of my head
I have a spot on my face that suffered permanent nerve damage from my ES surgery. It’s near my right ear & when I poke it I get radiating pain in my face. Nerves are funny things!!