For over a week I have experienced discomfort in my left ear and jaw, with some headache also on the left side. Over the weekend the discomfort worsened a bit to the point of occasional "pain." (The issue is not one of intense pain, thankfully, but mostly of persistent ongoing discomfort of a minor headache + minor earache + minor toothache that is beyond annoying.)
The past few days have also brought some occasional tingling/numbness to the tongue and lower lip (left-side only). I can only assume this is nerve interference from the mets in my skull, but who knows? I will be seeing my PCP this week, and MO next week, to discuss.
In the meantime, this discomfort has not fully responded to any of the meds I am currently taking, and getting great responses from, for all the other pains (back, nerve, etc.) that have arisen recently: gabapentin, oxycodone, tylenol, dexamethasone, and THC.
Interestingly, it responds briefly to a quick massage of points on the insole of my left foot -- an accidental discovery from applying that technique to my current sciatic pain, a trick learned from dealing with sciatica in my 20s and 30s.
Anybody else experienced this kind of discomfort, or have any ideas on treatment?
(I can only take off my left shoe and sock, and massage, just so much -- although the fact that I am spending most of my time on the couch makes it pretty easy! What I am mostly worried about is that the discomfort seems to be progressing, and may get to a point BEYOND "beyond annoying.")
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Have not done lipid panel recently, but generally good. BP and oxygen levels great. Recent EKGs fine. No chest pain or angina, but rapidly increased pulse and shortness of breath with exertion (not a new symptom, but one arising back in Feb and then recurring w/ COVID in July and now again in Nov/Dec).
Just started dexamethasone, and that has helped a lot with the SOBOE. Several chest CTs for monitoring PC have shown nothing that would relate lung-wise to these SOBOE symptoms. New doc has suggested echocardiogram to dig deeper for potential heart problems. Good idea?
No wheezing, just heavy breathing requiring recovery time after even minor exertion. Mostly accompanied by my other recurring symptom of extreme fatigue/tiredness/weakness.
These started out of the blue and got progressively worse over a few weeks in Feb, ultimately landing me in the ER. Since I was in fact not dying (not rapidly, at least) I was referred back to my PCP, who had already been stumped and remained stumped... but I got the feeling he wasn't trying too hard.
[I'm no conspiracy theorist, but these symptoms did begin 1-2 weeks after getting my COVID booster. I had no problems at all with my first two Moderna shots other than a sore arm. But I can't ignore that for four weeks after my 7/5 acute COVID of a few days, my recovery was very slow and included symptoms quite like those I had four months earlier.]
When these started back up in Nov, three months after resolving on their own in a month (as happened in the Feb episode), I first attributed them to my worsening anemia. But as they progressed, once again, the anemia did not explain them. Thank heavens the dex is helping! But I do wonder about the true cause.
The mandibular thing is brand new, and I would think not related.
The only L side issue was " Tracer uptake within the greater wing of the left sphenoid along the posterolateral orbital wall exhibiting increased uptake compared to prior"
That isn't close to the TMJ -TemporoMandibular Joint, it's behind the L eye
Any night time teeth grinding? Does L joint click or pop?
None of the above symptoms. I was thinking the mets were not directly impacting the mandible joint, but rather pressing on a nerve somewhere. Seems like that could be either in the skull near the area of discomfort, or even where the nerves enter in the base of the skull, but I have no idea exactly where V3 nerves actually run.
Regarding the mandibular nerve, here's a question right up your gum line.
Over a year ago, I had an extraction of a first premolar (?) that was, yes, on the upper left. It was prepared for an implant, but I opted to leave an empty hole because 1) that didn't really bother me, and 2) I was concerned I might be starting a bone-strengthening agent soon.
Both my dentist and oral surgeon said being toothless did not pose any serious risk beyond a shifting of surrounding teeth, as I recall. But is it possible this is related? I have never had any problems with my blank spot, and there are no in-mouth issues or pain that seems to relate to that area.
(To the extent I experience actual pain, it is at the very back of my jaw and right in front of and below my ear hole. Headache is in temple and at base of skull, left side only. Seems more likely mets, no?)
No, that extraction site has had a long enough time for bone to fill in the socket after the tooth was removed. And the space is too small to really impact your eating.
"New focus of radiotracer within the occipital bone concerning for new metastatic focus."
This is the back of your head, one broad bone at the base of the skull. The report above doesn't say where in the Occipital bone the radiotracer was detected
So, it could be that occipital area that may be causing pain in the base of your skull.
Can you open/close jaw a few times and press the joint that's right in front of ear on L side, any discomfort? Headache in Temple could be from clenching/grinding. Place your fingers on the L Temple and clench your teeth, is that area tender when you clench and press on it?
Okay, the muscles of chewing go from Temple down to under jaw. The joint is tender, but nothing in that scan said anything about radiotracer in that joint.
Can you open mouth wide without pain, or move jaw side to side?
This weekend was the first time there was a problem opening jaws wide, to eat, both Sat and Sun night. More discomfort than actual pain. Chewing was not a problem, as I did so with care.
Have not tried side-to-side, but will do so next time it acts up... today was not bad as far as the jaw goes, so I probably am getting SOME relief from the meds, just not full relief... perhaps without these meds things would be far worse!
Okay cool, sounds like a joint issue and not mets as no uptake in that joint. Now a concern is the uptake in the Occipital, base of skull where you are also having discomfort
My guy had a similar thing happen. We also assumed it was his skull mets. It was pretty annoying for a few weeks and resolved on its own for some reason. It was a total mystery. Interesting about the foot massaging. The human body is an incredible thing. Everything is connected. Best wishes. Wish I had more insight.
FINDINGS: Focal radiotracer within the greater wing of the left sphenoid along the posterolateral orbital wall without CT correlate. Focal uptake within the occipital bone, just inferior to the lambdoid suture without correlate on best seen on posterior planar and planar calvarial spot images.
There is a asymmetric sclerotic focus within the left occipital condyle associated with intense, asymmetric radiotracer uptake, best seen on SPECT-CT.
IMPRESSION:
1. New focus of radiotracer uptake localizing to the left sphenoid wing involving the posterior lateral aspect of the left orbital wall, concerning for new metastatic focus.
2. New focus of radiotracer within the occipital bone concerning for new metastatic focus.
3. Multifocal radiotracer avid osteoblastic lesions involving the left occipital condyle and cervical spine which are not well demonstrated on same day or prior planar images.
FINDINGS: Redemonstration of multiple foci of radiotracer uptake throughout the axial and appendicular skeleton, with a few foci demonstrating more prominent uptake compared to prior. For example:
* Tracer uptake within the greater wing of the left sphenoid along the posterolateral orbital wall exhibiting increased uptake compared to prior.
* New focus of uptake in the right parietal calvarium near the vertex.
* Increased tracer uptake at proximal right femoral diaphysis.
IMPRESSION: Compared to bone scan July 27, 2022, overall slight increase in osseous metastatic disease burden."
For what it's worth, this slight overall increase in metastatic disease burden was considered "stable disease" (i.e. showing no radiographic progression) by those administering the Novartis trial.
There are motor and sensory nerves that innervate the areas you have discomfort (trigeminal and hypoglossal nerves) which go through the sphenoid bone.
The mets are in the left side of the sphenoid bone and the symptoms you have are also in the left side .
Perhaps your PCP could order a MRI of the skull base which could help to determine if any nerve is affected by a met.
I was thinking MRI as well, thanks! It is not so serious (yet) that it hopefully can wait until my next therapy (most likely chemo) and just resolve if mets stop progressing.
Hmm..your meds are on point as far as pain relief and the fact that you have relief made me smile though we are literally fighting for my dad's life right now and he is also in severe pain and bed ridden . You said trigeminal neuralgia and if you ever had the herpes virus I'm wondering if a neurologist does say it's that an antiviral might help but do would the gabapentin . I swear to you that not all acupuncturists are equal and I know my issue is mobility and getting to acu,but if you have an acupuncturist and you have this response to a point on your foot I'm thinking acupuncture could only help . If someone knows trigger point acu as well as traditional acupuncture ,I swear by that for pain. Could it be coming from your neck? I use a spikey ball and put it in my sock and step down bc my hands are not always well enough for massage and I have issues with feet and body . I believe they are called lacrosse balls you could lay on or use on any trigger point .
pregabalin that I was prescribed for shingles worked a treat for my husbands trigeminal neuralgia but now if he feels pain on the left he massages the same spot on the opposite side of his head than the pain and it works ! It’s very bizarre ..
The pain you describe sounds an awful lot like the “TMJ” I’ve been suffering with for a few months. Even the discomfort opening the jaw wide, but no problems chewing.
purely guess, but sounds to me like teeth clenching while sleeping, or beginning of shingles attack on that nerve line from jaw to ear.
I have teeth clenching problem occasionally. Use the plastic nite guard in mouth for a couple days while sleeping helps.
Wife had shingles attack in jaw and ear a few years ago. No visible rash. Only pain in jaw teeth and eventually ear. Had constant ringing in her ear. Lasted two months.
Both problems can come from excessive stress. We all have plenty of that LOL
My husband has skull mets that have interfered with the optic nerve causing similar symptoms (and vision problems). They radiated the met and the symptoms disappeared. May be an option.
Sounds like you're not impressed by your PCP, when that is the case you should find a new one.
Was your PSA not being tested yearly or found too late by this same PCP? If that is the case you should find a new one.
Doctors just like lawyers or and other occupations have lots of lazy, incompetent, or unethical people licensed to practice. Don't assume because of the Dr degree that your's is not one of those.
I would always get a headache on the same right side of my head including the ear and deep inside the ear after each new injection of Lupron or Eligard. Would last a week.
My daughter developed trigeminal neuralgia, found a neurologist and was prescribed a nerve blocker. She was also found to have some degenerative disc disease in her neck that was repaired via surgery. You probably need to see a neuro for proper dx. Good luck.
My wife had your symptoms and was diagnosed with TMJ. One test was the oral surgeon pushed on either side of her cheeks, simultaneously, as she bit down, causing excruciating pain. He said it was TMJ and outfitted her with a nightly mouthpiece, first to be worn 24/7 for 2 months except when eating. All symptoms have not reoccured. Not a very scientific experiment, but whatever works!
Just to piggyback on dockam's responses--your symptoms are consistent with a garden variety TMJ/MPD situation. Certainly I couldn't r/o an influence of any mets, but none of those noted are in areas you'd expect to influence sensory innervation of the tongue. The numbness as an isolated symptom might be somewhat concerning, but my experience is that sometimes in chronic pain situations the nerves interact in ways you might not expect from your anatomy class.
I would certainly report these symptoms to your doctors; IDK how often you're having imaging studies done. But having a nightguard constructed by your dentist is an easy way to possibly get relief or if not to know what NOT to pursue.
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Zytiga and stomach pain; pain relief cocktails 
When does the pain kick in?
Pain relief needed
Zytiga and Prednisone.
Xtandi and leg and back aches
