Hi all. My name is Adam, I’m 38 and live in Colorado. This is my first post. Before I get too deep into explaining my story, I want to thank the entire group for providing an immense amount of info. A special to thank Jules for kindly messaging with me, and also SnappleofDiscord, for providing the excellent tutorial for converting the DICOM images (captured during CT scan) into a 3D model to show styloids.
Sorry for such a long post.
In 2005, I Jumped off a large ft cliff on my skis (on purpose). The very edge of the cliff was wind blown and bare rock was visible. The tail of one of the skis caught the edge and threw my balance forward. My forehead hit my groin when landing. Helmet flew off, etc. No broken neck, but a pretty severe case of whip lash and shaking hands for several days. I had my c6/c7 disc replaced last year because of this injury. c5/c6 will likely happen at some point. I have neurological symptoms that I won’t bring up, as I relate them to this injury.
In December of 2016, my right tonsil became sore. In January, what I thought to be a lymph node, popped up behind my jaw and below my ear lobe. After about a month, it hardened and became painless, but never went down and the tonsil pain continued. While feeling around the back of my throat with my finger, I found what seemed to be a small pointy bone sticking into the rear of my right tonsil. I PCP’d it and shortly thereafter ended up at an ENT office. The doctor was unable to feel the pointy bone, and focused heavily on the lump. CT with contrast ordered. Radiologist recommended an FNA on the lump. Nothing came back on the “pointy bone”. Lump Biopsy came back a Warthin’s Tumor. This was an interesting diagnosis, as the lump appeared overnight and simply hardened over time. Additionally, this type of tumor almost never presents itself until the 6th or 7th decade of life.
I had it excised in April 2017 and the ENT was fairly certain the tonsil pain was associated with the tumor. I suspected, what I deemed a swollen node, was caused by the bone sticking into the tonsil. What do I know, though. She also took a swollen lymph node during surgery, which was fishy to me. I only felt one lump.
Fast forward to today. Symptomatically, I wish it was only a sore tonsil still. It’s ironic, I couldn’t have associated some of my symptoms with the original one until reading on this site. Using SnappleofDiscord’s tutorial, I took my CT scan from early 2017 and went to town. Here’s some of the images I saved.
Using another tutorial, I was able to measure both SPs using 3D viewer. One measures 40.4 mm and the other was 39.4 mm (as of a year and a half ago!). I immediately had some resentment. Had my ENT told the radiologist to look for a bone pointing into my tonsil, this may have been discovered. Anyways…
The bone has grown more. I can feel how it’s changed since discovering it. It also looks like the one on the right had broken off near the skull base and has since refused. I can’t tell though. It is obvious they look quite different from one another. One’s bulky, the other is not.
Symptomatically here’s my list:
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Sore right tonsil
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Sharp inner ear pain. To alleviate pain, I pull on my ear. The direction I pull depends. This process is painful, but usually works. I feel like something pops or moves back into place when pulling. immediate relief follows.
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Chronic ear popping. I feel the need to open my eustachian tubes constantly.
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Heart palpitations. Also random. Feels like I’m going to pass out for about a second. Heart seems to skip a beat, then beats quickly for a few seconds. I wear an apple watch and monitor my heart rate daily, both while I sleep and when awake. Usually 67-70 resting when awake, and 51-54 when asleep. The palpitations happen a few times a week on average. They’ve have been present for a while. Heart checks out good. I can’t say the position of my neck causes this, but I’ll pay more attention. My blood pressure was 110/67 the last time it was checked.
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Sore bony structure behind tonsil- feels different than the protruding bone in the tonsil. But could be the same I guess? I can feel a ligament or something rolling over this bone. I presume it’s scraping over each time I swallow. Lots of pain here.
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Lightheadedness occasionally- I can’t say that this occurs when I move a particular way, although I haven’t paid attention much. Will pay closer attention.
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Very recently, when swallowing, pain radiates from the back of my throat, up through my temple and behind my eye. Makes me want to dig into my temple. Same side as the tonsil/throat pain. This is a come and go symptom. As I write this, I do not have this type of pain. However yesterday and much of the day before, I did. Sometimes I feel this same pain when I’m inhaling a very deep breath.
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Pain when yawning. The subsequent swallow afterwards is also extremely painful (more so than the typical painful “swallow”)
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Occasional ringing of the ears. Maybe once a week. Usually lasts for several minutes. but does subside
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Jaw pain- When pushing lower jaw forward.
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Occasional sound of tearing/grinding behind my jaw on the right side. It’s seems like somethings caught and breaks loose. It’s loud in my inner ear, but not painful. Sounds like bone on bone or something calcified breaking away. Almost relieving when it occurs.
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I’m tired more often than ever. I assume I’m just getting older
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Cruddy mood/baditude. Just ask my wife.
For now. I’m working on meeting Dr. Samji’s requirement for ES diagnosis and treatment. Going to see my PCP next week to share with her my findings and go from there. I’m not going back to my ENT here. Too upset with her. Trying to not channel the bad thoughts, though. I’d like to put that energy towards being properly diagnosed and treated.
If any of you have recommendations. I’m all ears. I’ve read a good amount on here, but I’m just breaking the surface on all of this. I just want to feel somewhat “normal” again.
Thanks in advance,
Adam
). I’m hoping someone from US-Colorado is on here and wants to meet for lunch or can make some recommendations for supporting local docs or something. I swear I read a post on here about a Colorado doc, but I’ve used the search tool and can’t seem to find it, nor are there any from here on the most updated doc list.
I feel blessed to have found this group before going through all of that, and feel horrible for the ones who have. I know I’m not diagnosed, but after almost two years searching for answers, I feel closer than ever to getting some sort of explanation.
. Apparently, I fractured my hyoid (presumably during my ski accident). It looks to have re-fused (a small connection at the fracture point).
