Sunday, June 28, 2020

In a place I never imagined: I’m hoping it’s just for a long visit

This may be my last post for awhile.  I’m just not good.  Since developing my TMJ disorder in December 2018, it’s taken me places I never imagined.  From nine months of snap, crackle & pop in my face (my jaws were a bowl of Rice Krispies) to the constant dizziness, blurred vision and upper body issues that later joined in, it’s like I’m fighting gravity on another world.

A year into things when it ‘blossomed’ into the temporalis muscles (large, flat muscles that cover the sides of your skull), I thought I was having a stroke.  Very intense pressure.   Any kind of chewing intensified it, and I changed to a slurping diet. 

I also began wearing a hard, acrylic oral splint over my upper teeth, all day, everyday to keep my teeth from clamping shut.  It did the trick, but my TMJD retaliated and spread into my neck & upper back.

In mid-February, the pain & pressure began to lessen in my jaws at least, and I began experimenting with more soild foods like toast, eggs & the occasional large pancake. Finally, after a year I was feeling human again!  Soon I was eating things like beans and chopped hot dogs. 

March & April got even better, and I began eating baked fish, rotisserie chicken & baked potatoes.  Soft sugar cookies (I baked myself).

I was still wearing the oral splint 24/7, but would take it out long enough to eat and when my jaw began to feel ‘wobbly’ I’d brush my teeth and pop it back in.

Then towards the end of April, everything went haywire and I went back to Planet X.  Liquids only on this world.  I’m experimenting with soups & watered down oatmeal though.

This past Thursday, my dear friend Elisa went with me to see Dr.Singh at North Pittsburgh Oral Surgery, an oral surgeon & TMJ specialist.  A very patient man, he aked me to explain everything that was going on.  He then did a 365 degree scan of my head and examined my skull, neck & the interior of my mouth with a couple of (gloved) fingers. 

He said “The good news is, you’re not a candidate for surgery.  I see no abnormalities or fractures in the skull or mandibular region.  Butttt…. your masseters are pretty swollen and appear very tender.  You’ve got some serious muscle spasm going on and I can see the tendons in your neck and right temple are swollen.  Besides your jaw pain, are you having any vision or balance problems?”

I told him yes, it pushes hard behind both eyes and in one ear & my upper back.  He said these issues weren’t uncommon, but such muscular derangement were out of his scope. 

He suggested I buy lidocaine patches for the painful areas, and prescribed a 6 day steroid pack of menthylprednisolone, to “break up” the chronic inflammation.

He also told me not to be afraid to load up on Tylenol, “it won’t hurt your kidneys like ibuprofen.”   I was tempted to tell him that my PCP said that Tylenol was the second leading cause of liver failure, but I just nodded my head & thanked him for his time.

The irony of it all is, after 20+ years of being 60-70 lbs overweight, I’ve now lost 55 lbs.  While picking up these items at the drugstore, I ran into someone I used to ride the bus with daily (before I retired 5 years ago) and she was very kind, exclaiming how “fit” I looked since the last time she saw me.  I told her she looked great too. 

After 18 months of this, I admit I’m fearful I’ll never be my old self again.  I recently met a kindred spirit online (Dan from New York, a man in his forties who’s been going thru the same things after having his wisdom teeth removed a couple years ago).  He said “I’m not a suicidal person, but I just can’t imagine living with this another 30-40 years either.” 

Same here, Dan… at least I probably won’t have that long and ok, that was pretty gloomy.  As always, if you made it this far, thanks for reading. 

So I wonder what’s happening on planet Earth?

7 comments:

  1. Planet X sounds like a hellsh place, but Earth is still here and waiting for your return. You can only keep striving for better days ahead. Full sympathy for your awful predicament, Doug. Don't give up the fight my friend!

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  2. This is awful. I am so sorry this is happening to you. You deserve an answer. Didn't the doctor have any referrals for someone to see about the muscular derangement? Take care.

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  3. Aww Doug, I hate hearing this. Like Beth, you deserve and need an answer and I'd keep checking doctors till one finds a way to fix you. With everything so specialized these days it is hard to find a doctor who can see beyond his own narrow field. Praying you find him and relief soon.

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  4. I would ask your PCP for another referral. I can't imagine the pain you are experiencing. Take care.

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  5. Florence, Beth, Patti, Gigi--thank you so much for your kind words, they meant a lot to read.

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  6. May the grace of your God comfort and keep you, during this time of discouragement and pain.

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  7. Good gosh, Doug! I’m so sorry for all you’re going through. I hope you’ll keep looking for a doctor who can better diagnose and prescribe something that will help. I know how depressing it can be. Just know we’re all thinking about you.

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