3 week update

3 weeks today.
I have more energy. Easier to swallow. Talk without losing my voice. Jaw and ear pain comes back in evening,but not horrible. Ear was numb for awhile. Swelling going down. Beginning to sleep more prone at night. A little first bite syndrome, but could not even chew on that side before.

Emma that’s fantastic! I’m so pleased for you that things are improving, hope that it continues that way & that there’s no more painful spells. Does it give you hope that it might be worth having the other side done in the future? Take care & God bless :+1:

Still early, I have pain around the ear and face and up in the head. Not bad, but there, just waiting it out. Generally, feels like I had surgery and some nerve involvement.Of course, would love to have it gone,but I think it will go away in time. The plan is to do the other side. We know it is longer and the stylohyoid to hyoid involvement is larger on that side.If I am not in a lot of distress, I want to wait until end of February. I do not like the idea of surgery in the flu season or Christmas season. I do not want to predict anything at this point.

I’m so glad to read this good news, Emma! God is answering my prayers for you! Hopefully all your current symptoms will disappear completely before long, but those old nerves can be slow to recover. It sounds like you’re much better than you were last week though so that’s progress!

4 week.
Still some first bite syndrome,but not very annoying
A very sore spot in my skull directly above the the spot where the styloid was removed. I would say just behind the top of my ear. This spot is very sensitive to touch and pressure from a pillow. Also correlates with tightness in my neck. It makes sleeping difficult and keeps the top quadrant of my skull including the area above my eye at my brow line achy, like a continual dull headache. It has been especially annoying the last two days. My neck and back muscles are tight. In two weeks, I can restart neck therapy to release the muscles. I think it will help.
I restarted lower back and ankle therapy this week.
I have more energy, though.
No more TMJ symptoms lately. Not using a TMJ guard anymore.
Almost all of the continual sinus drainage or mucous buildup in my throat and in the tissue where the styloid and stylohyoid were located is gone. Jaw pain gone. Ear pain has diminished this week.
Not sure that it is gone, but have not had any stomach pain or serious acid reflux either. I had some stomach problems the first two weeks. No left eye pain.
Surgery site is still slightly swollen,but easier to touch. Outer ear and earlobe are still numb and a little swollen. The entire surgical site is still tight, but not as tender. Still would not lie on that side for awhile.

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Thank you for the update, Emma! Sounds like your body is doing good work. I’m sure you’ll continue to notice improvements as time goes on. So glad to hear how far you’ve come from the first 2 weeks! God is good & faithful to answer our prayers!


Glad that things are still improving; sounds like some of the pain you have left is down to muscle tension as well, so hopefully that will improve more when you can start therapy. What do you do- exercises at home, or do you see a therapist? You’re in my prayers still!

Thanks so much for your updates…very encouraging and of course continue to confirm for me all the craziness I’ve been dealing with for soooooooo long! Just absolute craziness…if we all took meds for each of these different symptoms, we would spend our whole day taking meds and treating symptoms just trying to get some relief LOL! This nastiness we all share sure isn’t for sissies and I am so ready to be rid of it. Look forward to your next update - onward and upward my friend! :sparkling_heart:

Jules, I do both, at home exercises and therapy with a therapist 2 x a week. It was all things spine and back then added ankle. Will start back with the neck and upper back soon.
Have you checked out Dr Keith Sale at U of Kansas in Kansas City. I know he does skull base (external)… Another member used him. I don’t know if there is anyone closer to you and not sure how far that is for you. I think it would be closer than CA. I had planned on seeing him this summer, but God tossed me a miracle in Louisiana

emma, I have not checked out Dr. Keith Sale. I think there is another in Arizona somewhere that I need to check on. I am kind of waiting for my neuro here to finish looking at what he wants to see on this MRI he has ordered. So far, he is the only one besides my PCP that has actually shown interest in this nasty thing. I want him to be able to refer me to whomever I end up with for the surgery. That is if and when insurance decides to approve the MRI without contrast. I just had one a bit over a year ago with contrast and a CT with contrast about 8 months ago, so I’m thinking they are not going to approve it. At this point, I’m not going to stress myself out trying to get surgery scheduled before the first of the year. If it happens, then it happens - just so tired of the rat race. I am curious though about the skull base surgeons and whether they are able to address the ligaments too???

I would’ve thought so- it might need a larger incision, but they’d have to detach the end of the ligament from the styloid anyway…but good to double check if you get to the point of seeing someone. I know Dr Samji removes both, but I think he’s an ENT surgeon?

Dr. Samji is a skull-based ENT surgeon. His specialty is throat cancer but he’s now also specializing in ES surgery as he’s done more than 200 of them.

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I do keep wondering what happens to the ligament if not removed at the time the SP is removed…does it just float around in there if it isn’t calcified?

It just stays there. Sometimes, it is a problem. Was for me.

5 weeks.
WOW, Last thursday and Friday had terrific migraine.
Saturday, I was up and doing house work and yardwork. Not just light stuff. I could not stop cleaning things that I had not been able to clean. I used a heating pad on my back after and expected to be in bed Sunday.
Monday and Tuesday outside in the yard. We had some damage to our garden and front entrance from a critter, we have no critters. So I was removing mulch and scrubbing the front entrance. It has been at least 6 years since I have been able to do this kind of work,maybe longer. I have been hiring someone to do housecleaning and yardwork.
I have energy. I think much of my left side was disabled from this syndrome.
I can concentrate again.
The ledt ear and earlobe and incision are still numb to the touch,but I can touch it.
I have not tried lying flat on that side or flat in bed much, yet. When I did, I got a migraine, so that is the part that I notice. My left shoulder blade and trapezius
muscle from my shoulder to upper neck are no longer in searing agony. The right side is better,but still have the stolohyoid sticking my throat and some neck and shoulder blade pain, but it is much less painful. This has been a miracle for me, so far. Just hope the right side does not start raging as often happens with bilateral eagles.
My CT scan showed some partial blickage of my aortic arch. So, I proactively saw a cardiologist. After ultrasounds, and stress test and a CT of the heart itself, I have no blockages,no calcium in my heart and do not need any medication. All, I can say is never lose hope. I have had years of pain and loss of friends. So glad my hubby has always supported me.

I’m so glad that things have improved that much for you to be able to do cleaning like that, it’s amazing! Really pleased that you have the all clear from heart problems too. Fingers crossed the other side won’t get worse. You deserve to be as pain free as possible after all you’ve been through! :grin:

Yes, just left there I think!

I’m so thankful to hear your good news, emma! May your healing continue & your migraines desist! It’s good you’re noticing potential triggers for those so you can keep them at bay.
So my question is, can you send some of your energy & enthusiasm for yard & housework my way!?! :joy: :joy:

If only we were not so far away.
I have a fair amount of stuff to organize and catch up on after six years or more.

Doggone distance! Well, in the absence of physically helping each other, maybe we can be each other’s accountability partners. :blush: :+1: