Happy New Year! This is the year we once and for all
shall get rid of Katie's facial pain, Here's an update. She has continued to suffer greatly, and the worst of it that she began to lose hope that she'd ever be free of horrific pain, a constant Level 8, and sometimes up to a 10. Even so, she has continued to go to hair school, but it has nearly been impossible. She looks for ways to distract herself, like doing hair, photography, etc. I have been very impressed with her ability to keep on going, but have also been very worried about the effect of the constant battle. It has definitely taken its toll on her spirit.
Two weeks ago, a new Doctor named Jason Hunt at the Huntsman Cancer Institute, called. He had been consulting with the University of Utah Neurosurgeon, Dr. House, and he said he had an idea he'd like to present to us. So we went up there, and he did, indeed have a new approach that he called "nerve decompression." Earlier this Fall, Doctors thought they'd found a bone spur pressing against craniofacial nerve #5, the same nerve involved with
tic dolore, or trigeminal neuralgia. However, because Katie's pain is a throbbing pain rather than sharp, electrical pains, they did not think it consistent with trigeminal neuralgia. And, because of the placement of the bone spur, removing it was considered too risky to life. So they wanted to find options that were less dangerous.
So we talked about rhizotomy, which is to basically kill the affected craniofacial nerve #5, by injecting an alcohol substance. That is hard to do, because of her unique anatomy, but feasible. It would leave her cheek area numb the rest of her life, but would not affect any muscle movements, as that nerve isn't a motor control nerve.
But Dr. Hunt's new idea, which had never been brought up before, was to do nerve decompression. Which is to say, he would enter from under the lip and ream out the foramen, or hole through the boney base of the eye orbital, where the nerve heads back to the brain (see metal probe in picture above). This would hopefully put less pressure on the nerve as it passes that point, but there is no clinical indication that the point of injury is there. So he could give us no guesstimate of how successful this procedure might be, just that it was worth a try before proceeding to a more risky procedure close to the brain.
However, his discussion with us was very informative. He mentioned that doing his proposed procedure would have the risk of damaging tooth #2, which is Katie's only chewing surface (1st molar on the top right rear). Pam immediately had the thought: maybe that tooth is the source of the pain, so why not remove it first, and see if that relieves the pain? I mean, if the tooth is going to be lost anyway because of the nerve decompression procedure, let's remove the tooth and see what that does. It made really good sense to me! And about an hour later, it hit me like a brick wall that Pam had been inspired. Here's why:
- As her only chewing surface, that area takes a LOT of abuse. It could well be the source of the pain -
- We had never realized that the root of that tooth was right there where the pain is.
- There has been a strange discharge on-and-off that comes from behind that very tooth. It is the strangest thing - when it comes, it is quite a bit of stringy, nasty, fluid that tastes horrible. However, xrays don't reveal any source of that fluid.
Then, we remembered too that Dr. Gordon in Cincinnati had planned to remove that very tooth during the LeFort procedure in 2011, but when he got in there, he decided not to remove it, as that side of her jaw is so underdeveloped and has such little bone. The tooth itself makes up a large part of the bone, and he thought the jaw needed that mass. So, we started 2nd-guessing our conclusion.
So, I fasted for two Sundays in a row. I told the Lord that we just had to find a solution because Katie could not go on like this! She spent a night and a day in the hospital again the day after my 2nd fast, and things were coming to a head. But I did receive a confirmation that removing the tooth was the right first step. It has been a year since we've tried anything, though believe me, there have been a lot of discussions, evaluations, and attempts to find an answer.
Based on that answer, we set out to get the tooth extracted. Dr. Brett Christensen did another xray and clinical exam. He found no infection in the tooth, but said that "traumatic occlusion" could well be the source of the pain. He confirmed that if it was his daughter, this would be his plan too. I also consulted with the orthordontist, Dr. Prince, who also confirmed that he would go the same route if it were his daughter. (I've found that asking Doctors what they would do if it were there child is a very effective way to get them to think things through from the patient's perspective, rather than from their medical training alone.) Pam and I still had a lingering concern about what Dr. Gordon had said, though, about the lack of bone in that right jawbone.
So, I kept pushing, and yesterday, we were able to get a hold of Dr. Nick Egbert, a prosthodontist - the guy who is planning to fit Katie with dentures when the time comes. I asked him if pulling that tooth would ruin his plan for Katie, and surprisingly, he said that pulling tooth #2 was his very first step in the plan for Katie anyway, and that we should definitely pull it! He said the roots of that tooth are so shallow that it would have no negative effect on her jaw - no destabilization, which was my worry. That was GREAT news! He also added (through his assistant) that it was COMMON to have such bad pain through traumatic occlusion when there is only one chewing spot. So, that clinched it.
The extraction is set for Friday morning, two days from now. Originally, it was scheduled for today, but Dr. Scott Bulloch had to change his schedule around. We are SO HOPEFUL that this will alleviate Katie's pain! We'll let you know how it goes. Please continue to pray for her.
If it does not, we will continue quickly with the other steps outlined above, one by one. She has to get relief. She got a priesthood blessing last week that was quite powerful, and in it she was promised, "The hour of your deliverance is nigh." And SO IT IS!
Then, Dr. Arce came in.
Originally from Puerto Rico, we really liked him. He, too, offered no false hope, emphasizing
the reality of Katie’s situation. Their
goal is to ensure that whatever they do, they do not make things worse. He implied that due to her previous
surgeries, scar tissue, and other soft tissue limitations (i.e. skin) and the
osteomyelitis (bone infection) would significantly restrict anything they could
do. He stated that there was no
possibility of getting her front teeth to meet, so he asked Katie what her goal
was. Katie stated that she’d merely like
to have a couple of back teeth meet so she can chew again. She told him she’d lost almost 20 pounds in 4
months because those teeth that used to meet back there no longer met at all,
and that her diet had been extremely restricted because of the new situation.
