Has anyone experienced sudden onset of shoulder and arm pain extending all the way through, elbows, wrists and fingers? If I even can sleep I wake up many times a night sometimes unable to move because my hands are numb and swollen and getting up on my elbow to turn over is excruciating! They hurt all day now. I have been living w ES for at least 4 yrs probably more but this is new and nothing helps. I am having surgery for my left styloid this Thursday 2/18/21 but I am a bundle of stress from reading stories here about the pain getting worse before better. I usually can just deal w pain if I can rest but I am stressed because I babysit my 8 mos old grandson. I have the week off but I don’t know what is going to happen if I am in severe pain for weeks or months! I need encouragement and hope and also wonder if anyone else has dealt w the arm/ shoulders thing? Thanks, Sue
Well, I would try and get at least 2, 3 weeks off if possible. Some people can go back to work after 1 week but honestly it is a real push and I could do it.
Its not uncommon for neck muscles to get tight from the styloids and inflammation in neck, it then extends down to dysfunction in the shoulders and can go into the arms. Some of us have had this.
If you havent already, I suggest getting a wedge pillow now and for after surgery. I also got a u-shape pillow and this combination takes the pressure on my shoulders and arms. I wake up all the time with it all going numb on me. Hope that helps
The styloid process can compress the accessory nerve, which is one of the cranial nerves, so this could be what’s causing your pain, or as Snapple says it could be compressed by tight muscles.
Not long until your surgery,& hopefully this will ease! If you’ve read up on discussions then hopefully you’ll have seen the tips & advice given for after surgery & are prepared for that. Not everyone has worse pain after surgery, it depends on the position of the styloid process and which nerves might have to be moved out of the way. Who’s doing your surgery?
I’m sorry to cause you any more worry, but I really think that looking after your grandson after a week is going to set your healing back- you’ll be lifting him about & that’s too much for your neck while you heal, so if it’s at all possible for your family to arrange alternative childcare, or take more time off then it would be better for you. I had a fairly easy recovery compared to many, but found doing much lifting (I did voluntary work with young children) still gave me quite an ache a month after surgery, although I was helping a chunky monkey 3 year old!
I’ll be praying for all to go well & your swift healing 
sixgunsue,
I’ll also send up the rallying cry that you need more than one week post op before you start caring for & lifting an 8 month old. I know it will be an inconvenience for the parents, but they must understand you are having major surgery & recovery will take some time. I was ok by the end of two weeks & pretty much back to normal at the two month mark, however, some of my nerve healing took up to a year. I didn’t ever need pain meds beyond about 6 weeks post op.
I also agree w/ Jules that some people have worse pain post op for awhile but there are many of us who really had significant positive changes w/in a month or two post op. Hopefully your surgeon is very experienced at doing ES surgery as that can help encourage a quicker healing time & better long-term outcome.
I have Thoracic outlet syndrome in which caused symptoms similar to what you are describing. I had bilateral TOS surgery 2009/2010 which really helped cut down the symptoms. Although sometimes I still can have hard nights. I attribute it to my activity level during the day. I have been diagnosed with ES this year so after my surgery, I hope to check off a few more symptoms.
I have bilateral TOS as well and the symptoms sound similar to what is being described here. I have not been offered first rib resection - in Ontario Canada they don’t seem to believe in this procedure for neurogenic thoracic outlet syndrome. Was diagnosed with TOS by several neurologists and physiotherapists.
Thanks Isaiah. I have a husband here to help me because the parents have no other options. But I am in significant pain and suspect I will be for some time. When you say it took up to a year for nerve healing are we talking nerve pain or just some residual numbness? And what pain meds were you on for 6 wks?
Thanks, Sue
Hi sixgunsue,
The first week post op is by far the worst. I was Rxed Prednisone to help w/ inflammation & Percocet for pain. The Prednisone helped A LOT w/ the post op swelling. Many doctors don’t Rx it but will if asked in the first post op week. I think the Prednisone course ran 2 weeks & the Percocet was basically as long as I needed it which ended up being about 6 weeks for me. I did start spreading out my doses by week 2 & by week 3, I began cutting each dose in half & each week after I reduced the amount I took & the time between doses until I didn’t need it anymore. I never did try acetaminophen or ibuprofen because the Percocet worked well & I figured “if it ain’t broke, don’t fix it” i.e. I didn’t want to try something else that might not work as well for me. The Percocet made me a bit spacey but as I decreased my dose that went away. I never needed nerve pain meds.
My post op nerve pain lasted 6-9 months, however, it slowly decreased in intensity, & some of it disappeared completely but so gradually that I didn’t notice it going till it was gone. I did/do have some residual numbness along my left jawline left over from my second surgery & still have First Bite Syndrome from my first but it is also continuing to disappear even after 6.5 years. I have some permanent facial pain at my right jaw joint but it only hurts when I poke it so I don’t poke it. 
This week, your best friend will be ice - 15-20 min on & at least 45 min off several times over the day & even at night. Take your pain meds on schedule - I set an alarm so I didn’t miss my middle of the night doses. Keep your head elevated when resting or sleeping. Dr. Samji recommended at least 30º of head elevation which I tried to comply with, but it was a challenge to sleep almost sitting up. I needed to sleep head elevated for 6-8 weeks after surgery because of throat swelling. Many people are able to give it up after the first week post op.
If you’re taking a narcotic pain med, make sure you’re also taking a laxative & stool softener. This is a time when you for sure don’t want to add “clogged plumbing” to the mix.
I’m praying for you. You’ll get through this. It did take a couple of months before I was really “rarin’ & ready to go”.
Yeah, it’s awful. Did you have swelling in your throat that made you feel like you were unable to breathe. That’s what I’m struggling with. I usually don’t need much pain meds but Ibuprofen is not cutting it.
So with all that pain lasting still sometimes, do you still think its worth it?
I’m on day 3 and woke up early this morning around 4 w my throat very swollen. It feels like there’s some phlehm or something stuck down my throat but I know it’s just inflammation. Will ice help that? did you ever experience this, it’s making it hard to breathe.
Ice chips will help too if you’re able to suck them & swallow okay? If you feel like you’re having trouble with breathing then you need to get back in touch with your doctor- maybe you can get some steroids & they should help. Thinking of you, sending you a gentle hug,
Thanks Jules! I am doing better, I had cortef which is script hydrocortison. I have been on it for years low dose for adrenal insufficiency at about 20 to 30 mgs per day but had weaned down to only 2.5 mgs per day over the last few months, which is great but I felt the need to up the dose to 10 mgs per day or more to see if that helped and it has. I think I didn’t stress dose enough before surgery though and it really sent my body into shock. So the extra cortisol helped.
Glad that you’re feeling better, the next couple of days can be the worst for feeling rough & swelling, so good that you’re on top of it!
Hi sixgunsue,
My throat felt exactly like your description of yours. Every morning I would wake up feeling like my throat had swollen nearly closed overnight. I’d take my prednisone pills & w/in the hour that feeling would go away. I mentioned I slept pretty up right for 6+ weeks because I still had that sensation, but to a lesser degree, once I’d finished my course of prednisone. I’m so glad you were able to up your dose of Cortef. I’m sure that’s made a difference for you.
In answer to your other question…YES!! Surgery was worth the painful aftermath. By two months after surgery you’ll notice an improvement. By six months after surgery you’ll notice a much bigger improvement. I had bilateral ES & two surgeries, 9 months apart (not my choice!!) & have no regrets whatsoever. Just know that the first week post op is the WORST. By the second week little positive changes start happening & should continue going forward.
So, I know that it will still feel like the styloid is still there for a while. Any idea how long it usually takes before that sensation goes away?
I didn’t have the feeling that my styloid was still there, just a really sore throat post op & the feeling my throat was swelling closed. The sore throat was gone by the start of week 2, & as I said the throat swelling sensation went on for 6 or so weeks. I would expect you’d start noticing the “styloid sensation” is disappearing in 2-4 weeks after surgery.
How long did you are anyone have are hard time swallowing? Not from pain but just like the food won’t go down. It wants to go up. I can eat solids but have to wash every bite down or it just gets stuck. Is that normal?
I have TOS and I have to sleep flat (meaning no pillow and a firm bed), if my shoulders roll inward or my neck flexed toward my chest I have numbness also. I have an adjustable bed which helps a ton except that I prefer not to use it. I really like to sleep on my side and stomach which is really horrible for the numbness but sometimes I would like to forget I have TOS and sleep as I want.
sixgunsue,
It sounds like your post op swelling is lower down in your throat than mine was. I did have problems with choking on food before I had my styloids out so I know what type of feeling you’re having. It’s my opinion that the sensation you’re having will gradually disappear over the next few weeks. I had a hard time eating for several weeks after surgery but more because my jaw was really stiff & sore & my tongue was partially paralyzed from the surgery. As those problems began to resolve eating became less of a challenge.