I'm going easier on it, but it's getting worse

General
1

OK so now I'm really struggling with this affliction and I'm not sure what to do. It's the middle of the first quarter of the school year and if I'm out for surgery it'll cost my Calculus and Geometry students a bunch in lost understanding of the material.

Over the past weeks I've filtered out all behaviors that would tend to make my ES pain worse. That goes from eating hard candy to drinking through a straw. At night I can only sleep in one of two positions, and even in those positions sometimes I can hear the blood encountering difficulty in my artery (right side). It's disheartening. I can't do anything with negative pressure (like inhaling) if it's beyond what's required to breathe in through my mouth. I can do a few things with positive pressure (like exhaling), but not so much as to play a musical instrument or blow water through the drain hose to prepare to install my new dishwasher.

This week I caught a cold. Stuffy nose caused much higher pressure in inhaling, even in my sleep, and there was nothing I could do but wake up these past few days in serious pain from that right side styloid. I can't breathe well through my nose, so I spend the whole night hammering the ligaments with negative pressure, which seems to be THE source of all my agony.

I would suggest to everyone: THINK ABOUT THE THINGS YOU DO WITH YOUR FACE THAT EXACERBATE YOUR EAGLE'S SYNDROME. In my case, it's things to do with inhalation. Your triggers may be different. Also, I've noticed that an activity may not cause immediate pain; I've learned the pain may not increase until the next day, but there is a definite causal relationship here for mine, and I'm sure there is also for yours.

Do whatever you can to figure out what's causing your bad days. On MY bad days, like all this week, it's obvious when I do something that triggers it, because there's immediate pain. On my good days, there is no immediate pain but I've gotten to a point where I can tell "oh, that's gonna start it up again tomorrow."

I cannot allow myself to use narcotics to treat the symptoms. That's the same as throwing up a white flag of surrender.

I also can't find very many people who were helped by the surgery in the first place. The proportion of people helped to not helped seems to be like 1:50 or even 1:100. How can I justify that risk if there's not an easy way to SURELY determine that it WILL beat the odds and help me?

I am running out of options, but I feel I'm only one step away from this starting to affect my work and home performance.

:/ I will lean on my ENT to take another X-ray of the offending side. Just from a specific angle of my suggestion to be sure we can see any development.

Thanks for any ideas.

2

I'm sorry to hear that it's getting so hard. I want to tell you that I think most people are indeed helped by surgery. I was definitely helped by my first two surgeries, but I also discovered that I was having additional problems and had to have revision surgery because the first two surgeries didn't take out all the styloid. BUT - even though I had to have revision surgery - the first surgery definitely helped. It just didn't help enough. The best bet, in my opinion, is to have an external surgery that takes out the whole styloid - the FIRST time. Then you won't need to have a revision.

But I think most people I've read about here have been helped A LOT by their surgeries. I still think surgery is the only option to really be healed from Eagles. And it's best to get it done by a doctor who is experienced in doing Eagles surgeries. And there aren't that many of them around.

3

Can you describe for me any loss of function, sensitivity or body control you’ve suffered from the removal? Is it hard to swallow pills? Any changes worth noting?

Thanks for your advice!

4

I really haven't had any changes from my surgeries. No loss of function or body control. The only problem I've had is some pain left over from my second surgery about a year and a half ago. That surgery was with a doctor that didn't have Eagles experience and who I would not recommend for this surgery. I still have some slight pain under my jaw - kind of like when you're at the dentist and have been numbed and the feeling is coming back - it sort of feels like that.

I'm four months out from my third surgery (a revision surgery that Dr. Samji did) and I feel very good from that. I still have some pain right around the end of my jaw, but that's improving continually so I don't expect it to last.

I take most pills with no problem, but I did notice that the big non-coated pills aren't going down quite as easy as they used to. But I just take them with water and then I'm fine.

5

Fuzz, I had surgery on my right side in April. I was a textbook case of ES. After surgery, I have my life back and no pain at all on my right side. If what you truly have is ES....surgery is the cure. Many of our group have other problems as well and that may be why you are doubting the surgery results. As for recovery time, it was really very short... in my case...2 weeks and I was back at work. 7 to 9 days would have been possible to go back ...just had a bit of swelling after a week but felt great otherwise.