Lately Ive been having trouble getting comfortable when I lay down. I get pressure and pain in my head. I have ES on the right which is poking my tonsil, The left side is straight down. Its like it comes from the roof of my mouth in the back of my throat and goes straight down into my throat. It feels like a stick. Where the right side is curved and comes from more the back of my throat/head. The ent saw the scan a year ago and said he couldnt believe the left one doesnt bother me cuz its longer. I never even knew I had a left es. NOW a good month or 2 the left is bothering me big time. Pain in the neck next to the adams apple and when I lay down I get the head pain and pressure. The ent I saw a month ago looked at my scans and said I have classic but I fear its becoming vascular cuz of the pressure and pain and woogyness I feel. I meet with a surgeon on Friday, i hear he has done several ES. He is out of Black River Falls WI. Robert Defatta. Im just so scared. I googled. I read that ES can cause sudden death. I also read that mortality is high both if you leave it be or go for surgery due to it being by the main arteries. Ugh so sorry Im just terrified. I cant live like this but i dont want to die. All I do is WHAT IF. Im not healthy and overweight and have a lot of issues. So, im scared of surgery. :( I think its odd I can NOw feel the left side, I never could before. I can literally put my finger back and feel it going straight down, where the right is poking on my tonsil. Does the left side sound like ES? How do they cut it if its coming from the roof/top of the back of my throat?? Isnt that odd? I mean, dont they all come from the back of the head? :( FREAKING OUT! Sorry. x
Lisa: I have pretty much the exact same situation as you…you can feel the right side in my tonsil area, and my left side is longer and goes more straight down. My doctors have been surprised that my right side hurts worse too, but like you, my left side is getting worse. To me yes, it sounds like my ES. I have to be very careful about neck movements, and especially how I sleep or else a I will get the pressure, throbbing and a REALLY bad pain in the back of my head. I have been only able to sleep on my back and in a recliner. I find that not using a pillow and using a fleece throw for a pillow works, so I can kind of support my left side of my neck better so it doesn’t get irritated. Please hang in there and carefully consider your options. I am seeing. One doctor now, and will probably get a second opinion like many of the members on this wonderful site have done. Best wishes for peace as you make this journey! Hugs and prayers from Michigan, where we are finally unthawing!
I feel for you, having trouble sleeping makes dealing with pain worse, and gives you time in the small hours to worry about it all... I get pain in my neck Left side, plus awful pressure in my neck and head, so I can't lay on that side at all. I can't lie on my back either, as I get pains in my head and weird, horrible feelings in my head. So I can only sleep in my right, and that side's getting symptomatic too. What I've found helps is propping myself up with as many pillows as possible, because that eases the pressure in my head. I've got a V shaped orthopaedic pillow too on top, which seems to keep the pressure off the sides, that's been great.
The scan shows both sides are pressing on the jugular veins. That was the decision made for me about surgery- I'm not going to keep feeling like this, because the symptoms are getting scarier than the thought of surgery- I've got to the point where I feel that I don't have a choice.
It's understandable if you're worried about fitness for surgery, but they will assess you for that, and wouldn't do it if it was too risky. There have been a couple (from what I've read) of documented cases of death because the styloids have ruptured a blood vessel, but this is really, really rare, and the couple of ones I've seen online were people who'd not been diagnosed and therefore hadn't had surgery.
The base of your skull goes from the back of your head to the back of your throat, that's why you can feel them by your tonsils, especially if they curve. Hopefully you can talk through all of this with your surgeon; I hope that your appointment goes well, and that he can put your fears at rest,
Sending you hugs (from UK where we've had an unseasonal heat wave!!)
Thank you, guys. Im sorry Im so worrisome. I wish this was all a bad nightmare and was behind me. I meet the surgeon tomorrow so I'll let you know what I find out. Im sure he will want a new scan since mine is from a year ago Jan
Will pray for answers for you…we are glad to be your cheering and support squad, Lisa. It is scared to have this, and feel like we do. It hope things go well at the surgeon’s for you…