Going in for surgery to remove 7 cm of ligament and styloid process in two weeks on left side externally. Already did rt. side. I'm going to look like someone slit my throat!
Good luck with that mooncat, and let us know how you get on! How long ago was your surgery right side?
My last surgery was 8 1/2 months ago. The left side is ripe enough to have surgery done now. But, the right is has been bothering me too... like regrowth. What a scary and painful syndrome. The scariest part for me is not knowing if the bone growing will stop and not having the pain controlled. How are you handling things?
Pain's not too bad- controlled okay with amitriptyline, but getting comfortable at night is still difficult. I had vascular ES- that's improved a lot with first surgery, 2 months ago, although the other side is getting worse... I saw the consultant for a post-op check up yesterday, and he's seeing me again in 4 months and will see about the other side then. He thinks things can still be healing after the op. Perhaps it's scar tissue on the operated side giving you pain?
I still feel the throat and ear pain. I guess after years of size 9 pain for a 7 cm bone upsetting muscles and nerves there is probably long term damage? Has your heart been affected? Any palpatations or blood pressure changes? I've had palpatations and high blood pressure post surgery.
7cm bone is long... Is that what they took out? The consultant who did my op took out 4.8 cms- that's long enough, as I'm only a shortie! It's not really surprising that sometimes we're left with post-surgery pain! I have more palpitations than I used to, but nothing too bad. I think my BP is okay. It's such a shame that there's so little awareness and research into this, and so much ignorance. I was told that the styloids don't grow long, it's what you're born with by the first doc I saw. So how come there can be such a quick acceleration of symptoms then! There's been a few members who've had to have surgery again, but not that many that I recall reading about.
Yep, they took out 7 cm of bone! And now to do it on the other side. What upsets me the most is I'm up all night in pain and they think an ambien is going to make me sleep and that a muscle relaxer is going to take my pain away during the day and allow me to function at work. I'm suffering and no one seems to care or help. I think I've just reached my breaking point with pain. You seem to be at a stand still and doing ok?
Yes, I'm doing well- so pleased I had the surgery as the vascular symptoms were scary, and that's improved lots. I feel for you with the pain- mine wasn't as bad as yours, and has improved a bit post-surgery. But I couldn't sleep, and that makes everything so much worse, I was feeling really grim with that. The amitriptyline does help with the neuralgia pain, and helps me sleep, so double bonus! I was glad I'm not working full time, I never would've coped with that. I don't know how you're doing it, with that much pain... Have you had to take much time off? Is the pain mainly from the side you're waiting to have done, or both sides?
If you have a look through past discussions, I think there've been quite a few on what pain relief or alternatives people have found helpful.