What is the scariest part of ES for you? Mine is being in pain and not having relief and not knowing if the bone will stop growing. Will I be left in pain to ossifiy? Eeek!
My scariest part of ES worrying about vascular involvement/stroke. I experience dizziness especially @ work (I'm a hairdresser & my head is in funky angles to perform my haircuts) & visual disturbance/dizziness I get when I'm driving. Does anybody else experience this visual dizziness when driving?? I also get it when hiking in the woods & I have to look down & keep an eye on my footing, does anybody else experience this?? I do have pain in ear & throat on my elongated side but it passes & is not 24/7 pain. So this dizziness/out of body feeling is the scariest part for me. I was brushed off by an ENT doctor in MD from this site, because he doesn't believe in Vascular Eagles. He told me to stop reading about Eagles & read about vertigo & had me do this dppv test to reset crystals in my ear. Well I passed that w/flying colors, not crystals in my ear causing the issues!! I whole heartily knew that already but jumped thru his hoops hoping he would still help me, but because my main worries are the dizziness vs the pain I'm back to square 1 again, ugh!
I get dizzy too.. especially when it's hot or exercise too much. My balance is off and I need to walk my footing be able to grab onto stuff if needed. When there are bones in your neck I'm assuming they disturb the normal blood flow to your brain? My scariest part is being left in pain. I'm in pain now and have nothing that helps me to deal with it. It's agonizing. And I'm scared it will keep growing.
tbone, I'd love to give your doc a piece of my mind!! The first doc I saw didn't believe in vascular ES either, but when I was referred to a more experienced doctor, and I had a CT venogram, it showed the styloids both sides compressing the jugular vein. Really compressed on the left side! I so wish I could've been there when the first doctor was sent those results!! I had a constant spaced out and off-balance feeling when walking, but made even worse with visual stimulus too like turning round, or driving- it was getting to a point where I was thinking I perhaps shouldn't be driving... I felt like I'd had a bit too much to drink- wobbly, thinking was slow, I had to concentrate really hard on conversation, walk really carefully etc. But this has improved sooo much with surgery, I am so glad I was able to have it done. There's research articles on here with evidence of vascular ES, could you print those off to show your ENT, or is there anyone else you can be referred to? Don't give up, and keep trying.
Wow, you just described my symptoms Jules! " thinking I perhaps shouldn't be driving... I felt like I'd had a bit too much to drink- wobbly, thinking was slow, I had to concentrate really hard on conversation, walk really carefully" I thought I was getting mentally handicapped. Or had dimentia onset. My 7cm of bone had the jugular and carotid wrapped around it. Along with the golosialphayingial nerve... which the same nerve created scar tissue and fused to the carotid behind my ear/skull. I was still having sever pain 3 months post op and a brain mri showed that. They wanted to do brain surgery. Thank god, the pain subsided but, I still feel that nerve shooting in my neck. I wonder if it will affect my artery?
Mooncat I totally understand & hope you find help as well.... Jules, wow sounds a lot like me, it's an awful feeling/worry, so glad to hear you had improvement w/ this after surgery. I'm gonna keep trying, heading on a much needed vacation 1st but I think my next call will be Dr. Cognetti in PA. I believe others have had good results w/him??? Also a big thanks for the advise of the CT venogram. No one has ever suggested that to me & I've had an MRI in the past that has shown a complete blocked jugular vein. It does get so frustrating for all of us to find help, so thankful for this website.