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?
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 
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 
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 
That’s rough, I hope that they can find out what’s up, hugs…
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!
@Kaska. Hello! I know this is an old post. I hope you don’t mind me asking…how are you doing now? I’m seeing Dr. DeSilva tomorrow with suspected Eagles vs. HBS vs. hypoglossal pharyngeal neuralgia. Would you still recommend him based on your experience?