Blown Away... Joel's Weird Diagnosis Update

So that boy I married isn't much for believing in prayer. But as for me, I am pretty sure that God payed attention to all of your prayers, well wishes and good thoughts. No... the popping hasn't gone away ... but we may be a lot closer to treatment!

We visited this great place called Memphis Chiropractic Neurology  and Dr. Bibb had already begun researching Palatal Myoclonus. While amazing us with a few really interesting tests that showed obvious neurologic deficits (no jokes about how he's wired wrong :-) and exercises that seem to reroute the signals, making stuff work right (yup, technical terminology) ... he also let us know that he has a colleague HERE IN MEMPHIS who studied under the ONLY person in the country it seems with an answer to this uber rare disorder, Dr. John Lieurance - who has developed a method called functional cranial release. Joel's family was ready to take him to Florida for this when we heard this news. In fact I'd already scheduled a tentative set of 4 treatments. The very next morning, I called and left a message for doctor #3 in this crazy trifecta of medical assistance, Dr. Goode. In no time at all I got a call back from the doc himself who tells me that not only has he been in contact with both doctors, they will all work together to treat Joel! I nearly fell to pieces in the breakroom at work.

Every now and then humanity surprises me. Three doctors, three separate practices but they will come together to take on this monster that has stolen Joel's sanity.

Ready to find his smile again!

It's not a final solution and we don't know if it will work but it feels like the only thing that makes sense and has a chance of making the hideous popping stop. We start this tomorrow night ... the treatment will include endo-nasal ballons and various other methods used to open up neural pathways and oxygenate the brain. All in an effort to STOP THE POP! Let's do this people!!

Palatal Myo-what??

Have you ever been on an airplane when you had an earache or a sinus infection? You know how it takes that weird pressure in your ears to a whole 'nother level? When you get to a certain altitude, the pressure builds, you can't hear for a brief moment and then your ears pop. Relief, right?

Now, imagine that entire occurance happening every few seconds ... every minute ... every hour ... every day.  For months.

That is the rare siezure-like disorder called Palatal Myoclonus. And that is what that boy I married is dealing with right now. Wanna see something weird? Check out this video ... This is what it looks like.

Joel started out feeling this annoying popping in his ears. We thought it was sinuses, the ENT said it was more likely to be TMJ. A dentist and an oral surgeon ruled out that option. Enter Dr. Emmett at the Shea Ear Clinic ... a brief exam revealed this crazy diagnosis. While it was great to finally have a name for this issue, it only proved to be the beginning of a nightmarish journey with very few treatment options available.

The first go at treating the maddening popping included a nearly immobilizing tranqualizer which proved to be ineffective and stole an entire week of his life. So with meds off the table the only other options are
a.) one ... ONE ... chiropractor in the country located in Florida who specializes in treating the few thousand people diagnosed with PM each year.
b.) Botox injections to the soft palate that no one in Memphis actually performs. Joel's doctor is currently 'learning how' and we're not sure with the crazy list of possible side effects that we are willing to try this one out.

This may not seem like a terrible issue ... some popping in your ears ... big deal, right? That's unfortunately the reaction he's gotten from some people, friends even. But it is in a word maddening. This disorder can ultimately be very painful and has driven sufferers to thoughts of self harm and actual cases of suicide!!!!! As for Joel ... it has completely altered his being. Mind you, Joel is my opposite, he leans toward dark and surly, sarcastic and sharp. But he has always generally been a fun, laid back dude. Consider that guy gone. He has difficulty focusing on anything, is easily frustrated and just ... well ... miserable.

So what do we do??? Well, we are starting by trying a neurologic chiropractor. I figure if this guy in Florida has such great success, then craniofacial chiropractic has a chance at at least bringing about some relief.  We've also discovered the whole ordeal MAY have been caused by a combination of two medications he's been taking so of course we are changing those.

So here's where I ask for your help. Pray, pray for his strength, patience and healing. Send positive thoughts or send a message with encouraging words. Whatever you can do to encourage good mojo, it is greatly appreciated. In the meantime, I am on a quest to make our family live more naturally and find ways to kick all of the meds each of us requires. We have to make a change because this is no way to live.

I want him to find his smile again...