Aug 27, 2013

What's going on

I realize my past few facebook posts have been a little vague. Some of you may know what's been going on with our family, but many of you don't. I'm a little caught off guard when I'm asked "whats going on?" because we've been living this nightmare for almost 6 months. But I guess it's our fault that not many of you know...So if you feel like reading, I'll try and backtrack a bit. I might have mixed up things a bit but this is the just of it...

Back in March of this year, Ben started experiencing some jaw and neck pain.
After Eden was born in May it started bothering him enough to go and visit his PCP who didn't know how to diagnose him, so she started him on some pain meds.
His next stop was to see a dentist and to be sure this wasn't TMJ. It wasn't. They assured him he was just grinding his teeth at night and that a mouth guard would solve the problem. It did not.
His pain had gotten so severe he was sent to a neurologist and had an MRI done of his brain. During the MRI Ben experienced excruciating pain and later it was determined that he had shingles in his mouth. We believe he came down with shingles from all the stress he was under being in so much pain for so long. He was treated for shingles but the pain in his neck and jaw remained.

Then he began to see a chiropractor and when that wasn't helping he had done some research and found a chiropractor in our area who specializes in NUCCA. Ben was told he had a rotated C1 and that this doctor could help him but after weeks of treatment, he started to feel that maybe this wasn't the problem since his pain only worsened.
Next he went and saw a maxo facial specialist who made him a full mouth guard to better align his jaw and prevent any grinding, which he does still wear but has not relieved any of his pain.

He has sought counseling, gone to the ER twice and been to doctor after doctor including two more MRI's done this past Friday of his neck and jaw which revealed no known cause to his pain. He was out of work the whole month of june, with many days missed in july and august and at this point he is unable to work at all. He's had to sleep on the couch for almost two months, he has lost over 30 pounds due to the fact that eating causes him severe pain...

After going to the ER yesterday and still unable to find a diagnosis, they suggested that he be referred to Duke Hospital in NC to see if there is anything they can find. We are even going to press them to really rule out lyme disease.

At this point we are just waiting for the go ahead, and trusting this is the best decision. I feel as if time is running out since Ben is almost out of sick time starting next week at which point, if there is no treatment, he will be on a leave of absence and God is really going to have to strengthen my faith when it comes to finances...

So thats "whats going on?". We need prayers, advice, etc. I've started to wean the baby so I can be there for Ben when I can. I probably wont be able to go with him when/if he leaves for Duke right away which is a huge pill to swallow but all I can do is trust that God is leading us to find an answer soon, no matter what it takes.


  1. Prayers for you and your family!

  2. sorry to hear. have you looked into fibromyalgia? Hope the doctors can find the cause of the pain so Ben can begin treatment. Hang in there.

  3. Lesley I'm so sorry to hear about all this. I hope your husband finds the root of the problem soon. Three kids is a major transition no matter how good the baby is, I can't imagine with this extra stress. I'll be thinking of you guys.