8 days post lidocaine/steroid injections and in horrific pain!see

Hi guys, I’m basically new here (only posted once or twice months back) but my backstory is I’ve had progressive pain on right side of neck for about 8 going on 9 years now. It started out mild, and now its literally horrific. I do not work, I cannot sleep, I cannot bend down, i basically cannot do anything without triggering the intense pain. The pain itself is at the angle of my jaw, deep in the neck tissue and it feels like I have broken bones being crushed and rubbed together. The pain has now radiated down to my clavacle (the muscle that runs from neck to clavicle area is extremely painful) and also, the base of my skull in the occipital region is incredibly painful as well. Also have intense ear pain. All on right side. Ibprufen is the nly think that touches it. But it onlu lasts for about 3 hours before pain returns. Ive noticed that the pain is significantly worse when lying down, or sitting up after lying down for a prolonged period. The pain is so horrible I get nauseous and also it takes my breath away. It’s awful. Ive seen too many doctors to count, none know what to do or what is the culprit. I however, suspect eagles. I’m seeing a new doctor, and he wanted to try lidocaine injections. I was skeptical, not because I thought they would hurt (I have an extremely high pain tolerance now because of this) but bexause I was afraid that the injections would cause my neck to flair up, and lo and behold, that’s exactly what happened. I am 8 or 9 days post injection… I only let him administer 1 in the back of neck at base of skull on right side. I felt good for the first 2 or 3 days, then all he’ll broke loose on day 4/5. I have been in on absolute agony. Everything is so tender and painful it even hurts to swallow or lay down. I feel sick im in so much pain. Is this normal? Has anyone had a similar experience after getting a lidocaine and steroid injection? Was it the injection that caused this horrible flair up? I’m desperate. I literally want to die right now. It’d be alot less painful. Even before the injections, I had horrible pain like this, just now it seems to have upped a notch. I compare the pain to being shot in the neck multiple times… I feel like I’ve been shot 10 times. It’s so intense. I scream. I cry out. For hours this goes on. And I feel incredibly helpless, as going to the ER isnt an option. I’ve gone in the past multiple times when pain gets this bad and they don’t do anything. Nothing. I feel so hopeless. I am going to Cleveland clinic in the spring fwiw. It can’t come soon enough. 1p years of unrelenting, extreme pain is enough.

Edited to add: weather seems to play a role in the amount of pain im in. Cold weather is worse, while warm, humid temperatures seem to lessen the pain. Is this also normal? I literally have a heating pad glued to my neck 20 hours out of the day. I’ve gone through 3 heating pads within the last 2 years.

It sounds awful, I’m sorry that you’re in so much pain, & have been for so long. I’ve not had the injections myself, but I know of several members who’ve had it done, but in the stylohyoid ligament area, & I think the majority have had pain relief. I don’t know, but maybe it has irritated a nerve in the area & made things worse? It might be worth seeing a neurologist- they might be able to suggest something to try to ease the pain. There’s info in the Newbies Guide section about pain relief- for example some members have found lidocaine patches help, & there’s info on nerve pain medications. A muscle relaxant like Baclofen could also help.
I don’t know if you’ve had a look through the Doctors Info section at the doctors list, to see what more experienced doctors are in your area? It may be that you have to travel further afield to find someone if that’s possible. And not sure if you’ve had a CT? That’s the best scan to see what’s happening with the styloid processes.
Cold always made me worse too, I lived with a hot water bottle on my neck as much as possible! Some members find that cold helps them more & do the same with ice packs, it strange how it’s different.
Hope that it helps a little to know that you’re not alone, & we understand what you’re going though on here… Thinking of you, & sending you a hug :hugs:

I had 4 steroid injections in tonsillar fossa and 4 in the stylohyoid ligament.
After the firs injection, i was reliefed for about 14 hours but then , the pain was worse 20% .
My ent told me this is normal and to continue with injections.
After second injection , the effect lasted for 2 days and the pain came back gradually and not so intense.
I was so happy in the morning after injections becouse i feel normal again for couple of hours.
After the last injection, pain return in 2 days but not all at onece. First , pharingeal pain , then back neck pain , then ear pain , mandible , shoulder , deltoid and arm.
My neck muscles on the bad side fell stretched and i can fell the bones in may spine like the muscles contracted and the spine is right under the skin. :-((

Our stories sound the same! I was diagnosed in January after years of mystery pain and symptoms!
Anyway… I just had lidocaine/cortisone shots April 5… I felt great for 2weeks… now it’s back to the same terrible pain :weary:
Although I think it feels worse because I did have relief for a couple weeks!

Poor you, must be horrible going back to pain after that lovely break, but on a positive note, it might help you wih making a decision about surgery? Hugs : :hugs:

Glad you had some relief! Is coming to the US for surgery an option for you or do you know of a Canadian surgeon who will take care of you? Can you get the injection again to give you some pain relief while you’re making a decision about surgery?

So sorry for your suffering!

Thanks Jules and Isaiah!
I would love to have surgery however I’m still waiting to see my ENT (he is very in demand and my situation is not “urgent”) and an unsure of his capabilities as far as Eagles goes… I’ve been told he is a great surgeon who does a lot of head and neck cancers… so I figure if he can cut out complicated cancers he could get out my lovely bones?! Lol I’m being hopeful! I’m also not sure when I could get injections, imsure 3 weeks is too soon and I am scheduled back to the pain management clinic for June. They also gave me PT exercise to do so I’m keeping up with those and trying to manage my anxiety about this whole situation… I think that’s one of my worst problems!
As far as coming to the US… the cost would be staggering I’m sure so right now I’m not looking into it, at least until I see someone here!

Your ENT does sound potentially like a good bet, but shame about the long wait… I think with the injections they can only do them 2 or 3 times as well.
I think most of us have had anxiety about our symptoms, so you’re not alone…

1 Like

Yes, I second Jules comment. It does sound like you have a competent ENT doctor to see. That is great news since many Canadian ES patients have not had that experience. I hope your PT is helpful in alleviate your symptoms at least to some degree.

1 Like

Well my ENT turned out to be a bust… He cannot help me. I have been referred to a skull based surgeon now. Hopefully he can help because this is getting unbearable !

That’s frustrating, but a skull based surgeon is a good bet; they’re used to operating in the area of the styloids, & can do external surgery. Fingers crossed for you! (& hope you don’t have to wait too long!)

1 Like

Hi… How’s your pain now?!
I’m still in the same situation but I wanted to let you know what I’ve been advised… my family Dr, her associate and the neurologist that I saw ALL recommended CBD oil to manage my pain and anxiety. … that was everyone’s response especially with bad luck with all the other meds that I’ve tried!

Hope that works for you! :hugs:

I’m giving it a try! Day 1!

1 Like