Been a rough couple of weeks of recovery unfortunately. Still suffering from shoulder pain and struggling a lot with lateral neck pain on both sides which seems to be causing migraines. Had my worst yet Monday and ended up vomiting several times in the middle of the night. Been going to PT but seeing minimal results so far. The tension near the incision is getting better and stretching definitely helps. Been also using a theragun to relieve muscle tension along with alternating heat and ice. Unfortunately however I seem to be constantly fighting off a headache. Jaw gets pretty sore as well kinda like I’ve over used it and my teeth are sore along with the bitter taste in my mouth. I know a lot of this will hopefully get better with time but I’m curious what you all might have for advice to help relieve some of the side affects in the mean time. Also does anyone have any recommendations for pillows? I’ve switch many times over the years before figuring out the real cause of my neck pain and I’m wondering if anyone has found something that helps. Thanks for any input it’s greatly appreciated!!
My first reaction to your post is that maybe your body isn’t ready for PT yet. The neck area is very delicate so if your PT isn’t being careful or doesn’t know the territory well, any manual work (s)he is doing may be too much for you at this point. Also, mobility or stretching exercises you’re being given may also be exacerbating your pain if they’re too advanced. If I were you, I’d stop PT for a month & see if your current pain/symptoms begin to recede.
A Theragun on your traps & other shoulder muscles is fine, but it’s far too aggressive for your neck area even on low & w/ a soft, blunt tip on it. I assume you’re only using it on your shoulder muscles though. I expect your accessory nerve will recover w/ time but it may take some months. If it continues to be as painful as it is now beyond 2 mos post op, I would talk to Dr. Annino or your PCP about trying a nerve pain med to help break the pain cycle which should help healing.
If your other styloid is elongated as well, it may be contributing to your current symptoms. For many of us w/ bilateral ES, it wasn’t long after our first surgeries before our remaining styloid became problematic.
Because you’re an athlete (as am I), you likely just want to get on w/ healing so you’re “pushing the envelope” a bit to try to hurry it along. With this surgery, there can be no “envelope pushing”. Healing happens fastest when you take it easy & listen to your body. If you do an activity & feel worse that day or next, don’t repeat the activity for a few weeks. Your body is telling you it’s not ready yet. If you have a day where you feel great, don’t push yourself to the max as you’re likely to sorely regret it for the next 3-4 days. Ease back in to activities…baby steps. I think you will find that helps. I made the mistake of pushing too hard too soon after surgery & am convinced it slowed my recovery.
I use a down pillow because I can “shape it” to put support where I want it & take pressure off where I don’t want it.
Can’t help with the pillows but be very careful with the terrain, as the tissue is still very fragile.
Rick, I concur with what @vdm and @Isaiah_40_31 have stated about backing off PT. You’re not even 2 mos post yet and that tissue is very tender yet in the area. I began gentle self massage on the incision at about 3 weeks. I’d gotten a bit more aggressive several weeks later and I believe that wasn’t a great idea. I’m just over 11 weeks now and have been doing craniosacral therapy which is incredible gentle but effective. Maybe that’s an option for you rather than traditional therapy. My PT who’s worked in orthopedic settings told me that inflammation is not uncommon for 4-5 mos due to the internal healing. She compared this to be as major of a surgery as knee replacements she’s seen…a good indication to go easy in those areas!
I was given some really good advice from another member early on (forgive me, as I can’t recall who it was) but they said to just address one issue at a time. This is good advice to share alongside what our forum leaders share that this recovery is a marathon, not a sprint.
For pillows…boy, I wish I had advice- I always struggle with pillows! I just tried a memory foam pillow (similar to the famous My Pillow that’s always advertised) but with my small 5’4” frame, it did less good for me because it was too puffy. If your stature is a little bigger, this may be something to test out. It’s basically little torn up bits of memory foam. If I could find one with less bits inside, I bet it would be comfy!
Hang in there my friend! You’re doing great and we’re all in this together 
Thanks all for the quick responses! So far PT has just been light neck massage on the base of my skull (avoiding the surgery area) along with heat and tens. He tried some dry needling yesterday for the first time so we’ll see how that goes. I’ve also been doing light stretching and light isometrics. I’ve avoided the surgery area all together and the pain from that isn’t so bad as long as I lightly stretch. I’m definitely not good at “taking it easy” and that’s especially hard as a stay at home Dad of a 14 month old but I have to find a way to manage. On the days when I feel the worst it’s almost flu like with body aches and exhaustion which I’m assuming is related to vagus nerve irritation. Thanks again for all of your help!
I guess maybe you have to lift your little one about? Lifting definitely made everything more painful with me- I went back to working part time with 3 year olds after 4 weeks & did notice it aggravated things although it was minimal lifting…I appreciate that if you’re a stay at home dad then it’s perhaps unavoidable.
As for pillows, I did find a V-shaped pillow- for orthopaedic/ feeding- seemed to help as it took a bit of the pressure off the sides of my neck.
I hope that you turn the corner soon & will keep praying 
I’ve had a complex case of Eagle Syndrome for over 29 years. It wasn’t diagnosed until about 15 months ago. (I’ve tried EVERYTHING to feel better and while my head/face/throat/ear nerve/muscle pain has worsened, I have learned a lot that has helped the rest of me to be more strong than ever and avoid back, hip, and elbow (ulnar nerve-related) surgeries I supposedly needed, etc, etc.) This–just now–is my first time sharing my ES story!!
I’ve learned a great deal about pillows, reading peer-reviewed studies and also adapting what’s supposedly best to my complex ES.
To help the muscles of the neck to release fully, the pillow must support the head properly. For side-sleeping, a firm pillow that supports the head so that it’s level is generally best, though with ES, you may need more pillow height when sleeping on the side opposite your ES, to help put the affected muscles on slack.
When sleeping on your back, make sure the pillow is not thick, providing just enough support so that your neck is not hyperextended.
Wishing you the speediest full recovery!!!
(first post here)
Welcome to the site & thanks for that advice @PamelaInNYC ! Where are you on your ES journey, as you considering surgery?
I meet by video with Dr. Ryan Osborne on this coming Tuesday. Very grateful for this group!
It sounds to me like you are maybe doing too much, too. I was also an athlete before ES - I’m very much a “push through it” kind of person. It definitely doesn’t work that way with ES. I would mention the headaches to your provider.
Pillows - I got a wedge pillow before surgery and it didn’t help. It has been a lifesaver post surgery. I use it, and about 5 other pillows stacked around me now. One under each arm, one to prop the ice up on my neck, a small pillow to get my neck at the right angle… a pillow under my knees (this helps keep me from sliding down the wedge pillow).
Sometimes I prop one next to me and pretend my last marriage worked out. The pillow won’t get me fresh ice, but it’s nice to think it would (LOL)
Hi @Rickstarbird,
I’m so sorry to hear your recovery has been difficult- I’m right there with you. Before my surgery I had some luck with a cervical memory foam pillow. For a few months after changing I woke up and didn’t have neck pain for the first few hours of the morning at least (which was progress). They sell them on Amazon as well as a plethora of other places I’m sure. I’ve tried a few brands and they seems to all be pretty similar- but Elviros is the one I ended up going with.
I’m almost at the 3 month point in recovery, and it’s definitely true what all the others are saying- Marathon not a sprint. Make sure to give yourself the care and time you need. Hope you start to feel better soon! Sending healing vibes your way =)
@PamelaInNYC - I hope your meeting w/ Dr. Osborne goes well. We’ve had a couple of members he’s helped so I hope he will help you, too!
I had another thought…it’s possible the tens unit stimulation is a bit too much for your healing nerves at the moment. It would be worthwhile stopping that aspect of your PT for awhile to see if that helps at all. Otherwise the PT you described sounds good for your current stage of recovery.
Thank you sooooo much, @Isaiah_40_31