Hello everyone. I haven't posted in a while But I need the wisdom of your experience. Here's my question: have you had ear aches caused by swollen lymph nodes without having an infection?
Here's my story: I'm still in a clinical trial and pretty closely monitored. My immunoglobulins are low and falling, but not dramatically low as of 5 months ago. IgG 410, IgA28, IgM13. All other blood work is normal as of 2 months ago, and 2 MRD tests have come back negative. I get CT scans every 6 months which show slightly enlarges lymphs in my abdomen. Those haven't changed in 2 years, and scans are due again next month as well.
About 4 weeks ago I got an earache and sore throat on my right side, chills, and then a cough and sinus congestion which started to clear in a few days. I did a happy dance for getting through it without antibiotics, and then it roared back with the addition of an eye infection. My primary care doc couldn't see me and the clinic isn't allowing in-person visits to anyone with a cough so I had a tele-visit with another doc in the same system. He prescribed a Z Pack (something my PC doc has avoided since she thinks I need to save the heavy hitters for the long haul) and it started to clear by the end of the treatment and then cleared completely.
Yesterday the sore throat and ear ache (right side again) returned. Both times I've had a very painful, swollen lymph node under my jaw, directly below my ear. No eye infection so far, and no chills, congestion or cough. I just feel crummy and ache.
I'm wondering 2 things: have you has any experience with low but not critically low IgG, or had painful jaw lymph nodes that cause ear and throat pain?
Also, anybody else get chills without a fever with infections? Just curious.
Thanks for any insight!
DMary
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DMary
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DMary, could your sore throat be caused by tonsils? There are three kinds of tonsils,
Adenoid, Parotid and lingual. They are immune fighting tissue.
Is it possible for you to see an Ear Nose Throat Dr. for a thorough exam? If you cannot get an appointment to be seen and examined, I'd consider going to Emergency.
Fevers with chills are symptoms of infection that needs to be tended to. As many have said, Sepsis is the danger to us. From your description, you need to be seen and if the only way is emergency, please go, the sooner the better.
Thanks for the reply and concern , I can always count on a response from this lovely place. I didnt have a fever, just chills. If the chills return, or I get a fever I'll arrange a consult. Right now it's just a very painful ear and jaw creeping down the right side of my throat. Very peculiar.
I've read the posts that say folks have had sore throats with swollen lymph nodes, but dont find anything about ear pain.
If I dont need urgent care over the weekend Ill try to get a referral to an ent on monday.
Thanks again for your reply. PS I dont have tonsils unless they didnt remove all three kinds when I was a kid.
Actually the one I related as Parotid, is Palantine, and I do not know about what the childhood tonsillectomy includes, but am now curious. can't find definitive answer, but it appears there are later Lingual tonsil removals, so...
but the urgency is that you do evidently have a recurring infection.
They wouldn’t remove all three types of tonsils when you had surgery, and the ones they do remove can actually grow back. I wasn’t thrilled to hear that after my surgery in my 20s! and I don’t think that it’s common.
Are you going by your personal normal when you check for a fever? Mine is 97.6 and 98.6 I can have symptoms of a fever. 99.0 usually means that I have an infection.
I seem to have ongoing r ear pain without ear infection and my lymph nodes on the right are swollen chronically. Every time I am checked out, there is no ear infection
For all of you that are experiencing ear pain with no ear infection, be sure to see an ENT. I had the same problem for about 6 months, saw an ENT and he couldn't find a cause. I went for a second opinion to another ENT and it turns out I had cancer of the larnyx.
Thank you for this important info. I doubt many will see it since the comment is on an old post. Welcome to the site and you might consider repeating this in a new post when you start posting.Best regards, DMary
That was interesting, I had my tonsils taken out when 5 years old as common procedure. My brother had a bout of whooping cough. Year or so later, I had my adenoid taken out. Doctors thought removal of adenoid might help my hearing which was largely destroyed by measles when I was 4 years old. It did not help my hearing, but I did not get most of the childhood illnesses other than measles. Get those measles shots. Blessings.
DMary, it could be that ear and throat pain are indicating an infection, which is causing your painful jaw lymph nodes. I suspect you will need a culture taken to determine the cause of the recurring infection, so more targeted (presumably antibiotics) can be prescribed. Hence I agree with cllady01 that you need to be seen in person. Fevers with chills need to be seen to urgently.
Yeah, hard to get a culture anywhere but the er these days because if covid concerns. I'll definitely take that route if the eye infection or fever return.
Hi DMary, A slightly different experience but could be relevant. I have a spinal nerve injury after an accident, and the nerve is one which links to facial are. I get earache, and sore throat - which only hurts on the affected side - or sometimes very little feeling in my throat. Sometimes one nostril runny and grotty and the other one isn't. So yes, things happening in the neck can affect areas you are talking about. SO perhaps a lymph node could be pressing on something close to your spinal nerves. However - this doesn't mean you don't need to see your doctor. I hope they can sort it out, these are horrible symptoms to have.
I think is probably a good idea. The other problem I have with the nerve damage is that the ear on the affected side cannot distinguish sound volume, and I hear everything very loudly - really irritating that is,. Take care, keep safe, and I hope your Primary Care doctor can help you xx
Hello Everyone, this is my first post and wanted to respond to DMary and to seek advice from this invaluable forum. I was diagnosed 18 months ago and have been on Watch&Wait with 3 then 6 monthly appointments.
The last 6-9 months I have been suffering with blocked nose, earache, sore throat and enlarged lymph node in my neck, three weeks ago I developed a stye on my right eyelid for the first time, although it has now gone there is still redness which makes me feel like the sore throat, blocked nose and earache could return on a regular basis.
I read in one of the replies the concern around sepsis, I have had only very low grade temperatures and wanted advice as to what stage should I seek medical advice/intervention , I seem to have accepted the ENT symptoms but since getting the eye infection (stye) and reading the thread on how others have suffered with this too I wanted to seek further information to (hopefully) prevent a sudden ‘crash’ in symptoms namely developing sepsis. All responses would be much appreciated.
Hi Wendy. That sounds miserable and I hope you find answers. I'm so glad you found this site and made the decision to reach out. My guess is that you'll get a much warmer welcome and more responses if you make this a seperate post though. Comments aren't as widely read as posts. Best wishes.
hi yes i have swollen lymph nodes in my neck and have ear pain on and off, going into clinical trial next week acalabrutinib, its the cll causing the nodes not an infection im sure, because i had anitibiotics and my inflammation number is 0.
Hi DMary , yes I have had bad jaw pain and earache (I’m on W&W ) . No fever but fierce exhaustion ! . My doc sent me to ENT specialist , I’ve been scoped and had a throat scan . Nothing sinister to report , happily . Small painful nodes .? 🤷♀️ The pain is intermittent and migrating. There are not always answers I find . Hope the pain eases ...mine does . All the best . Emer
Hi DMary. I had symptoms like that and it turned out to be silent reflux, LPR. This can be triggered by other gastric trouble caused by low IGa in particular. A bit of a wild card I know but it took me ages to get this diagnosis. Hope you feel better soon. X
Have you considered salivary stones in the submandibular or parotid glands? They produce jaw and ear pain, sometimes inflammation of nodes and areas of firmness. A CT scan is needed for precise diagnosis. Good luck!
DMary, I recently has my first obinutuzumab infusion and had bouts of shakes and fever following it, sometimes together but also sometimes just the shakes. Don't know if that was signifying infection, or just an infusion reaction.
You’ve gotten a lot of great suggestions here for a set of issues I’ve faced, as well, although similar symptoms can come from different causes. One suggestion I’m not sure I’ve read is dental. Have you had root canals, particularly on your uppers? Post root canal, even permanently thereafter, there can be micro-channels from the inside of your mouth, up through the gum line, directly into the sinuses. A visit to your dentist for a checkup, inclusive of a set of bitewing X-rays might not be a bad idea. In my case, coordination between my ENT, dentist, and CLL specialist was critical for breaking a four-month long bought with something that sounds similar to what you are going through.
I'll toss in my two cents. Is a Z-pack sufficient for a cll patient, duration-wise? I recall reading on this site that we may require longer durations of antibiotics to achieve comparable results. I don't have any references to back this but it might be worth considering.
I was interested to see you post. I had exactly the same thing pre diagnosis. I started to experience ear pain that seemed to wax and wane for about 6 months before being diagnosed. I assumed it was an ear infection so eventually went to emergency to be sent home with antibiotics for an ear infection.
The pain continued even on antibiotics and became a chronic painful ear canal and surrounding area. I attended emergency several times and came home with the same diagnosis and treatment. The antibiotics had little to no effect. At one point my ear was so bad it actually swelled shut.
I was convinced at this point it was not an ear infection but could not get any doctor to agree.
Simultaneously my gp, sent me for a routine cbc, which upon a smear test, resulted in testing and diagnosis of CLL.
In hindsight, the nodes in my neck were visibly thick on the same side as my affected ear but at the time I knew nothing about the lymp system. I had gained weight so assumed the full face and neck area was a result of recent fluid retention.
Long story short, after a battery of tests I was diagnosed with stage 3 CLL with tp53 deletion and unmutated which put me in a category for Ibrutinib treatment.
After 2_weeks the nodes returned to almost normal and the troubles with my ear disipated.
My non-medical opinion is there was a direct correlation.
I still experience a dodgy ear from time to time which I know is directly related to my nodes in that area.
Thank you for sharing your ear experience. It is so important for us to share on this forum. It validates my experience. My intuition told me something was up, that it was not an ear infection and I was not losing my mind. Lol
I’m wondering if anyone has diagnosed with allergies. Never had issues with nodes. First year with shots , I received a new serum and broke out with severe hives and swollen nodes. That was two months ago. I’m taking Sudafed as of yesterday from doc he found ears had fluid. I was on antibiotics/ prednisone for ten days. The past month, Prednisone helped a little.
Just wondering if anyone had this experience and if it goes away. I’m not getting allergy shots since the bad experience. They don’t care anyway. They just want money.
I have enlarged lymph nodes in the neck area. The pain you are describing I also have had. There are 2 nerves in the area: trigeminal neuralgia and glassopharangeal neuralgia. The medication for this is pretty toxic for me so I just wait it out. Eventually it goes away until it comes back again. It’s nerves 5 or 9.
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Painful lymph nodes
Swollen nodes right side of body GOLF BALL SIZE 
Lymph Nodes
Swollen lymph nodes in the neck.
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