Quantcast

Eagle Syndrome - Online Support Group

New to this page

Couple things ~ try ice pack on back of neck, warm wash cloth or rice sock around ear. Hemp oil on jaw line. magnesium before bed. In am vitamin D3. Sleep at least 45 degree angle when in this much pain.

I am sorry you are in so much pain. These are a couple things that help me. Sometimes just a little relief helps! Tomorrow will be a new day!

1 Like

Thank you I will try all that !

1 Like

Hope things improve soon, days 3-5 do seem to be the worst, so hang in there…big hugs :hugs::bouquet:

1 Like

Hi Kaska,

I’m also sorry for your misery. As Jules said, You’re in the thick of the worst period of post op pain. By next week some or all of what you’re feeling now will start to settle down. It WILL take a couple of months before you see more major changes i.e. disappearnce of symptoms, less fatigue, etc.

sjlash offered some interesting ideas. Glad you’re game to try them. Sometimes experimentation is necessary to find what works best.

I am also sending you a hug :hugs: & a prayer :pray: for this time to pass quickly so you start feeling good.

1 Like

sjlash ~ Speaking of which…how are you doing? You’ve been kind of quiet since you had your second surgery.

I hope you’re recovering well!

Praying for you, too!

Thank you for that. You guys keep me sane through this time. I got 11 hours of sleep last night! Crazy! So at least I’m sleeping good. Pain about the same today. Can’t wait for next week! Thank you guys and hugs for you!

2 Likes

Glad you had a good sleep at least! Helpscyou cope a little bit better…keep strong! We’ll keep praying for you & keep sending you hugs! :bouquet:

1 Like

Kaska ~

Sleep is great for healing! So glad you slept well. I promise next week will be better. Look for little improvements. Sometime you have to really pay attention, but there will be some.

:blush:

2 Likes

Just a little 2 week update since my hyoid bone surgery. Well the swallowing and chewing is back to normal, but I didn’t have a problem with this before surgery. But my neck pain before the surgery is still there. The pain is moving around as before. In my neck, jaw, ear, upper spine , down to stomach, choking feeling and my lymph nodes are still hitting me up. The swelling is almost gone so it makes me nervous because the dr said once the swelling is gone I should see improvements but there haven’t been any. I’m just trying to take it day by day. Just tired of sitting on my butt all day. I’ll probably start to take short walks tomorrow. At least I’m sleeping good. Seems the pain is so much less when I’m still for a while but as soon as I wake up and start moving…boom…back to misery. I just hope I made the right decision and something else isn’t causing this. I just don’t know what else it could be.
Thank you for the support :heart:

Hi Kaska,

You are still very early in your post op recovery. Your visible external swelling may be almost gone but internally there is still BIG work going on. You’ll have inflammation where you can’t see or feel it for a couple of months post op. It’s your body’s way of protecting the area injured by surgery while it heals. (Think of it as a protective cushion around those healing tissues). It will take from several months to a year for the affected nerves to heal.

It’s good for you to start moving now even if you don’t feel great when you do. Listen to your body & keep your activity low & slow for another month. I know this isn’t ideal when you’re an active person, but trust me when I say that alone will help you recover faster. I jumped back into exercising 2 weeks post op after my first ES surgery. BIG MISTAKE! I ended up having to take my Rx pain meds for close to 6 weeks post op & feel certain it’s because I wasn’t willing to moderate my activity during that time. Hindsight is always 20/20 isn’t it!

Your pain & current symptoms should disappear over time, but it’s a gradual process.

1 Like

Thank you Isaiah. I will take it easy and keep that in mind. I keep having to tell myself to be patient, it’s so hard when your in so much pain. But I know so many of us are going through the same thing. Thank you :heart:

2 Likes

Unfortunately we’ve got quite a few members going through tough recoveries at the moment, so you’re not alone. I’m sure that if you read Sewmomma’s recovery story you’ll see how up & down it can be- she had calcified ligaments removed from the hyoid bone upwards. So maybe not unlike your surgery in recovery terms?
I don’t want to dismiss what doctors say, but many do seem to think that it’s a simple couple of weeks recovery, where from our experience it doesn’t seem to be the case! So try not to worry because of what your doctor told you!
Patience is definitely needed! Lots of prayers & hugs coming your way…:pray::bouquet:

2 Likes

3 week post op hyoid bone surgery update . I feel horrible. Seems like each week is worse. My neck hurts so bad but the worst pain is from my lymph nodes. I have new ones that popped up on my face , by my cheek and jaw that are hurting so bad. Horrible temple headaches that come and go. Really bad stomach pain in upper abdomen that comes and goes which I’m thinking is lymph nodes. My axillary lymph nodes also hurt. I’m weak and sick to my stomach. I told my surgeon and he doesn’t think this is normal. Since he’s so far I’m seeing my regular doctor next week to see if this could be something else. I just feel like the surgery made me feel so much worse. So frustrating because after 3 years I thought I finally figured it out and now I feel like I have to start from the beginning and I don’t know if I have the strength. What else could cause such horrible pain in my neck and make my lymph nodes hurt so bad all over my body. My doctor prescribed me Lyrica for pain, hoping that will at least help me a little bit. Sorry don’t mean to be negative just really discouraged.

Kaska, sorry that you’re feeling so rough, it’s not normal to feel that bad after surgery, you haven’t got an infection or anything?
Brooklyn girl has had alot of trouble with possibly the vagus nerve post surgery, it could be similar with you having the stomach problems?
It is still early days after the surgery although worrying if you’ve not had any improvement…nerves do take a long time to heal, hopefully the headaches will settle. The lyrica can take a while to start working so give that a chance.
Sending you a big hug…

Thank you Jules. I don’t think I have an infection, I don’t have a fever and I’ve had these episodes of feeling really bad before the surgery, it’s now so much worse. Seems like each day a new lymph node starts hurting. Last night my breast started hurting real bad, I’m guessing the lymph node in there. I’m at a loss.

I know members have had enlarged lymph nodes in the neck, but not generally all over. I guess your doctor had no suggestions? Inflammation & auto immune diseases can cause painful lymph nodes all over- it could be a response to the ES/ hyoid surgery, or maybe that yiu’re developing an AI condition. Blood tests to check for inflammatory markers would be fairly simple to do? & if they show anything & it continues to worsen then a referral to an immunologist?

1 Like

This started with painful lymph node in my neck and once in awhile in my axillary. I’ve had all kinds of blood work done including for inflammation. I’ve also been to a rheumatologist and infectious disease doctor. My blood comes out perfect. I’ve been tested for everything, $6000 in lab Bill’s :tired_face: I haven’t tried an immunologist so that’s a good idea. My doctor says to see my doctor and he will communicate with her what to do next, he mentioned other possible neck scanning. But I’ve already had an MRI and CT so I don’t know what other scans there are. I’ve also had 2 needle biopsies of my neck lymph nodes. I’m thinking maybe my next step should be Mayo Clinic. Thank you so much for responding Jules. I appreciate your input :heart:

Darn Kaska! That is a long haul, I am so sorry for your suffering and wild medical journey, I can relate and feel for you. Keep your chin up and don’t stop looking or asking loads of questions…it will be solved. Obviously your immune system is fighting something so eat as clean as you can, stay hydrated and rest. Thinking of you :purple_heart::sparkles:

2 Likes

That’s rough, I hope that they can find out what’s up, hugs…

1 Like

Hi Kaska,

I’m going out on a limb here…swollen lymph nodes are usually a sign that your body is fighting something. A fever is often present when there is a systemic infection because a raised body temperature helps the body to kill off the virus or bacteria causing the problem. In some cases, a lowered body temperature occurs instead of a fever & in others, there is no change in body temp. It may be that your body is working so hard to recover from surgery that it’s not doing a good job of fighting whatever is causing your lymph glands to swell & hurt. Either that, or whatever is causing the lymph gland swelling is something that your body is not fully acknowledging as an “invader” so it’s not responding full force to try to eradicate it.

Since I’m not a doctor, I could be way off base, but whatever the cause, I hope that w/ the collaboration between your surgeon & your doctor, you get a diagnosis soon & treatment to help your body start moving toward full recovery. A visit to an immunologist as Jules suggested is not a bad idea either.

I’m praying for you!

:pray: :rose:

5 Likes