Mom’s symptoms have doctor stumped- probable tonsil cancer

We’re desperately looking for any answers. This is probably going to be long so apologies in advance, and thank you to anyone who takes the time to read this. Everything is posted with her permission.

My mom is 68, prior smoker of 30ish years, about half a pack a day. She had breaks from smoking for a couple years at a time intermittently. Quit cigarettes about 12 years ago, has been vaping consistently until she quit about two months ago.

Her mom, heavy smoker and drinker, died from a throat tumor that attached to her carotid artery.

About 8 months ago, my mom noticed that she felt something in her throat. For 5.5 months she saw ENT #1 who did absolutely nothing for her. First he didn’t believe that there was anything there at all. Then he diagnosed her with acid reflux. He would look in her ear for about a minute per appointment and send her home. Meanwhile the pain is getting worse and worse. She goes to the ER for pain and they finally do imaging and see a mass, diagnose it as a tonsil abscess. ENT #1 tries to lance it BLINDLY with a scalpel and causes her extreme pain, swelling, and scar tissue. Ever since then she can’t drink water without aspiration. She finally seeks out another ENT. ENT#2 puts her on her 5th round of antibiotics and steroids. After two months, he says it’s above his head and finally refers her to ENT#3, who specializes in throat cancer surgery. At this point she is in horrible pain every day, can’t hardly eat or drink, and has been prescribed morphine and other opiates that barely manage her pain. While waiting for this new doctor’s appointment, the new symptoms below suddenly develop.

Randomly, my mom will have dizziness which quickly progresses into extreme bradycardia (heart rates as low as 20-30), low blood pressure (71/58 for example), horrible pain at the site of the tumor spreading up the side of her head, seizing, loss of consciousness, memory black outs, uncontrollable muscle spasms.

We have gone to the ER twice for these episodes. She has had a pacemaker put in. The cardiologists say her heart is perfectly healthy in scans and tests, but whatever is causing the events puts her life at risk so the pacemaker helps it be less life threatening. The events and symptoms still happen but her heart rate can’t drop below 50 anymore. Every time we’ve been inpatient they refuse to do a biopsy or treat her throat tumor at all, instead focusing on the symptoms and pain management. She also can’t speak properly anymore.

We FINALLY saw ENT#3 yesterday. He did a biopsy. Basically told us that it looks like cancer, that it’s either tobacco or HPV related and the survival stats for each. Biopsy was of her lymph node and not the mass itself. We have to schedule a PET scan.

Here’s the thing: he doesn’t understand how this tumor can be related to her symptoms, especially the “attacks” she gets that send her to the ER. She has never had any other health problem, no diabetes or anything. He’s going to refer us to a neurologist.

Not here asking for medical advice. But has anyone ever had anything similar or heard of anything similar? We’ve seen four ENTs total (one in the hospital who didn’t do anything), three cardiologists, several internal medicine doctors, a pulmonologist, and no one can explain her symptoms. And no one can help beyond giving her pain medication. I’m just so terrified and I don’t know what to do.