My primary ES symptom has been ear pain for the last 5 months. But in the last 2-3 weeks, it has been nearly absent! Sometimes I feel a twinge or a prolonged pain, but then it’s only about 5% as painful as it was before, and often I feel no pain at all.
So…what to do now? I’ve had a detailed CT scan done, and I’ve been in touch with a good surgeon who believes surgery would help me. But now my primary symptom is gone. Should I still go through with the surgery (it would be intraoral)? Will the pain come back worse if I l don’t do something about it? Will the styloid grow longer (it’s 4.5 cm now) and cause more damage, maybe permanent?
I still have head swimminess as a secondary symptom, but sometimes I don’t notice that either. Maybe it isn’t caused by ES, after all.
So, now I’m not sure what to do. My wife says to “get that thing out of there”, but I don’t think she understands the difficulty of intraoral surgery recovery and how surgery could even make things worse.
Quite a few members have had spells where their pain eases off a bit often for no rhyme or reason; some members decide that they can live with the symptoms and the risk of surgery worries them more than the surgery. It’s a personal decision… For me, initially the pain was bearable, but a year after getting diagnosed it worsened and the vascular symptoms started- it was a no-brainer then. I’m not sure why it suddenly got worse, but I did have other neck problems and a bulging disc C5-C6, so could only think that maybe it was enough to shift things about in my neck, who knows! I don’t know of any members who have had symptoms disappear for good, but then they probably wouldn’t bother coming back on here if they’d improved!
The styloids can keep growing but not always, again it varies!
Maybe you could just postpone surgery until you feel sure, just see how things go for a few months? And enjoy being okay for a while!!
I think it is great that your pain has subsided! I wonder what is causing your head “swimminess” – if it is vascular compression, what could be the long term issues? Perhaps discussing this risk with your doctor and researching online for yourself may help you decide your next step.
In the interest of helping others who have ear pain, I’ll list what things I’ve done a little differently in recent weeks. Of course, I actually have no idea which, if any, of these things has been responsible for the the reduced ear pain.
I’ve stopped poking and prodding at my ears, jaws, throat, neck, etc. Things got much worse, not better, when I was “exploring” for bones and nerves and trigger points.
I started sleeping almost exclusively on the side that doesn’t hurt as much. I had tried this before for a couple of nights, and noticed no difference. But, maybe it was necessary to do this for several days/weeks before any relief was felt.
I bought a fancy pillow with ear holes. It’s called a Womfy.
I’ve been doing big, wide shoulder rolls a few times a day to loosen things up.
I try not to twist my neck too far or to bend way over, either forward or especially to either side. So, to turn my neck, I try to put more shoulder twist into it, rather have the whole turn be in the neck. To look at something below me, I’ve gotten in the habit of squatting down towards the object.
The points listed in my above post have given me some ideas about why my ear suddenly began hurting so much, starting in November. Again, I have no idea if any of this is a true cause; I’m mostly thinking out loud.
I feel like maybe the elongated processes are the root, physical cause of my ear pain, but things I did in the summer and fall created a situation where that area of my head and neck became disturbed or irritated.
All summer long, I was working on a landscaping project where I was shoveling rocks into a wheelbarrow and hauling it. That was a lot of being bent forward under a heavy load. I was also doing push-ups every day. So, my shoulders were getting more work than they were used to getting.
In the summer and fall, I had gotten into the habit of sleeping mostly on my right side (what became the bad side) with my balled-up fists on top of each other, under the pillow, in the area directly below my ear. Over time, that may have caused too much pressure on my jaw and ear cartilage.
Starting in the fall, I began volunteering at my kids’ school library. Shelving books requires hours of bending forward and way over to the side, scanning across Dewey decimal numbers. Even now, while my pain is reduced, I notice that it gets noticably worse after working in the library for a couple of days. I try to move side-to-side and squat more often now, rather than bending over and reaching for the shelves.
I don’t know…just some ideas.
One more thought…
Many people here have said that, after ES surgery, it takes them weeks before they can sleep on the surgery side again. Also, many have reported increased pain on the other side after surgery. Could sleeping so much on the non-surgery have something to do with that side getting worse than it was before?
Hi my pain on left side was unbearable i couldnt even chew for about two months and ear pain with all sorts of quick sharp pains and then i discovered the bone behind my tonsil. I think after time the pain eased of and wasnt constant anymore only if i pressed that bone. Now i just physically feel the uncomfortableness of it. However i fear that it will move and grow more and cause pain again. Now on the right side its got alot worse with soft palate and ear pain and im beginning to wonder if its something else as the calcified ligament on that side is going downwards and maybe thats been there for years. Im also deciding weather to get surgery and the surgeon cant say for sure that the soft palate pain or any other symptoms are eagles related. They cant give guarantees i know that but what if i just needed one surgery instead of two.
Good thoughts & sleuthing fivetiger! I agree w/ Jules that the pain/symptoms from ES can come & go, but I also agree w/ you in that there absolutely are things we do that can aggravate the symptoms, & when you stop doing those things, your nerves calm down & stop being irritated thus the pain subsides.
If you’re satisfied with how you feel now, then wait to have surgery till your symptoms become more pronounced or persistent. If you want to prevent future symptoms then have your surgery now. It does take awhile to recover, but you’ll be pretty functional after a couple of weeks. It took me a couple of months after each surgery to really feel back to normal.
I had the same symptoms and sometimes the ear pain would mysteriously go away but it always came back. I had my intraoral extraction on both sides late last year and have no regrets. The recovery time was minimal and I am a 58 year old woman. I occasionally still have dull aching in my ears but that sharp intense pain has not returned and for this I am extremely grateful. I’m sure you will make the best choice for yourself. Good luck.
I had my surgery through my mouth. I too, had off and on pain. I always had a poking feeling the whole 17 years. Heck, I didn’t even have a diagnosis. Yes, you should have the surgery and deal with it once and for all. It only gets worse. Yes, recovery will be long. You have to have a good support at home, while you recover.
I couldn’t work for about 6 months. I had to take it one day at a time. Hope you can have the mental and financial support at home. This is a hard surgery and you need to have good support at home.