Hi, I haven’t been on the forum due to other health issues but saw this in the weekly digest and wanted to respond.
I have had a bit Tori under the tongue since I was little, just enough to make bite wing X-rays at the dentist hurt a bit.
I began to have severe ear pain and swelling under the ear in May 2016. It took 4 years to sort out that I had an elongated styloid, and that it is atypical styloid syndrome, pressing on various cranial nerves.
Bones Go Wild
6 months later in November 2016 or so I noticed that when I pulled my lip up I had substantial bone growth on the outside above my upper teeth going back towards the left. (Called buccal exotosis). It has continued to grow since then all the way to the back of my gums. It is also growing on the right side.
It has been so big I can’t even get a small toothbrush up there and swishing my mouth doesn’t remove food and bacteria. It is pushing on my sinuses and creating additional pain. I am going to have it removed. That, along with a ridiculously dry mouth, caused dental decay in every tooth. (Longer story there).
The Tori under my tongue grew so much that the bone was almost even with the top of my bottom teeth.
“It must be caused by this and nothing else”.
Apparently I subconsciously clench and almost shut my teeth together for a microsecond and this causes Tori to grow. I had an appliance made for my bottom teeth that I wear 24/7 except for cleaning it. Everyone said that I must have sleep apnea. Apparently clenching and bruxism is most often caused by sleep apnea. The appliance is supposed to stop this.
My argument against this is that I do this when I am awake. I had a test which was negative but borderline. My other argument is that Tori are still growing.
How Spiky Bones led to my diagnosis of ES
Then the most bizarre thing happened, which makes me believe this is related somehow to ES. June 2019…
Under my tongue towards the rear, where there was minimal Tori, about an inch below both bottom rear molars on each side, sharp spike like bones started poking through the mucosa ON BOTH SIDES at the exact same time. OUCH
No one couldn’t see them because my tongue and the Tori were covering it. A fluid filled bubble painful thing popped up on the left side, leaving the dentist at my pain clinic at the university of Washington and his friends to scratch their heads and shrug. “It shouldn’t hurt” seems to be the mantra of doctors everywhere.
I saw my Orofacial specialist and requested/begged for a 360 CT scan even though I had one a year prior. I had it done and he sent it off to be read by a specialist.
Keep in mind that it is now late November 2019. So dem bones have been growing… I come back in as the CT results are back and FINALLY he could see them. He was so amazed, as far as he knew this hadn’t happened before. He took photos.
So the CT scan results gave me a diagnosis of ES.
I had the Tori and spiky bones removed by an oral surgeon.
I am having a parathyroid blood test done as a result of another medical issue. I will let you know if anything turns up