Thursday, January 1, 2015

Nerve Decompression vs.Tooth Extraction


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! 

Thursday, October 9, 2014

Caper!

Hi - Katie's had some bad weeks lately with increased pain, plus we've had the bad news from the Doctors in NYC that they don't believe they can help her.  So we're trusting in the Lord and finding some other doctors willing to look at her situation closer by.  We feel it's a blessing to at least be able to focus near home.  We had a fast for her two weeks ago, and we saw some immediate improvement, though she continues to hurt a lot.  At least now she is going to her Paul Mitchell hair school, which she loves.

In fact, she is right now trying to win a slot to go to Paul Mitchell's CAPER, a big hair convention in Las Vegas in February. She's doing very well in her training at the school, but needs to sell 20 more bags to win an all-paid slot to the convention. Please take a look at the bags featured - I think they cost about $32 each, or you can buy an awesome straightener for $65 that counts as 3 bags. Be sure to say you want the sale to go to Katie Whicker. Thanks! Here's the link: ‪#‎Caper15Bags‬
Paul Mitchell Caper Contest

It's a race, so please hurry!  Call 435-656-2178 to order, and mention it's for Katie Whicker.  Thanks! 

Sunday, May 18, 2014

Super Girl!

SUPER GIRL KATIE!
Well, the day has finally arrived! Despite surgeries, hospitalizations, pain and other trials, Katilyn Whicker has arrived at the point of GRADUATION!  Tonight, Sunday, she graduated from Seminary, which is our Church's religious education program that is an actual released time period of each school day.  This coming Thursday, she graduates from Dixie High School.  It has been nick and tuck for quite awhile, but she pulled it off.  So, we're calling her SUPER GIRL for now!  (I hope it doesn't go to her head....)  She's still suffering quite a bit of pain daily, but is managing to push through.  She will continue hair school at Paul Mitchell, after we get back from our summer travels.  Thanks for your continued prayers and love.  We may even get to New York to see a specialist on facial pain, Dr. Jeffrey Brown, if we can ever get him to do a phone consult.

Sunday, December 8, 2013

Cystic Hygroma



...only without so much "hyrgo."  We are so glad to have discovered the root of Katie’s facial pain.  It is a large cyst, which has evidently been there, undetected, for at least over a year, probably two.  Previous images from last year show it plainly, but no doctors saw it because they were focused more on bone issues, and overlooked the soft tissue problems.  Thankfully, an ENT (Dr. Grimmer) that the infectious disease guy asked to look at her, immediately saw the problem.  He is used to working with soft facial tissue and it jumped right out at him.  Two days ago, on Friday, they successfully completed the scan with contrast.  I guess the cyst in her cheek is larger, more cavernous, than expected, so it took a whole lot of fluid.  But they think they have a pretty good feel now for what needs to be done.  This weekend, we have fasted to understand which of our three choices to take:

1.      Do nothing, and let her live with the pain, controlling it with Gabapentin, amitriptyline, and, if necessary, Oxycodone;
2.      Do a radical facial excision of the cyst, which would require that they basically peel the right side of her face back and CAREFULLY cut it out so as not to damage any of the five facial nerves; or,
3.      Do at least one and possibly three injections of bleomycin, and first-line cancer drug, which would hopefully cause the cyst to collapse on itself and thus heal. This procedure is called "sclerotherapy."

#2 has been proven to be the most successful means of dealing with such a “cystic hygroma,” but contains serious dangers that we don’t want to have to deal with if there is another way.  We’ve researched this 3rd option, and though it, too, has some potentially bad outcomes, if done correctly (meaning the right dilutions and hitting exactly the right spot), has been shown to be very effective.  The medications she’s been taking have given her some relief, but I can’t imagine having to deal with that pain for the rest of her life.  So, our decision, with which we went to the Lord in prayer and fasting this weekend, was to pursue Option 3 as quickly as possible.  It won’t require a hospital stay, so she’ll be able to participate in the holiday cheer, and can happen within the next two weeks.  We’re awaiting confirmation that we’ve made, or not, the right decision.  Please pray with us.  Katie is so anxious to get rid of the thing that she seems almost willing to just submit to the radical surgery and get it over with.  But we feel pretty strongly about trying the less invasive alternative first.

Monday, November 25, 2013

Queen for a Day!

Katie was thrilled to be crowned Queen at Dixie High's Senior Ball on Saturday night!  Here are a couple of pictures - you can see how excited she was!  Of course, it was too much activity for a gal with a facial infection, and she has paid for it dearly today, with increased pain, to the point it affected her vision.  But she'll remember this day of fame for her entire life!


Tuesday, October 22, 2013

Teeth

Hi, All – the predicted demise of Katie’s teeth is progressing.  She has been in terrible pain for several days, but it’s been building for several weeks.  There is another tooth that has failed, and there are no other options than to remove it.  Fortunately, Dr. Egbert, whom we saw in SLC last Thursday, thinks there is enough bone to implant a couple of posts to at least give her two or three molars on each side to chew on.  Previous dentists had concluded that her bone density was too low to handle implants, but they didn’t have the expertise of a prosthedontist, so we’re hoping Dr. Egbert is right, AND that the implants will be adequately solid and correctly placed to hold some front teeth too, for appearance’s sake.

Katie is on antibiotics to clear the infection caused by the bad tooth, so hopefully that will reduce the pain.  She’ll see our good, wonderful dental coordinator, Dr. Christensen, tomorrow, so we can get the tooth extraction scheduled for next week. So please pray with intensity that we can get some implants to take hold so she can have teeth.  We were so disappointed that the prosthetic jaw wasn’t an option, because that would have given a good, strong foundation to at least her bottom teeth.  But, come to think of it, it wouldn’t have done anything to help the top teeth, so this is the route we would have had to go anyway.

This continues to be a very stressful thing for our little family here on Charbonne Dr.  We’re counting on your faith, combined with ours, to first, reduce her pain; and then, to allow the implants to take solid hold.

Thanks.  We love you all very much

Friday, September 13, 2013

Tuesday, September 10, 2013

KSL News

Ken from KSL contacted me tonight; the story on KT's ears will be aired this Thursday night during the news at 10:15 pm (approximately). You can watch it live at that time on the internet at http://live.ksl.com/scheduler/embed-view?cid=KSLHP_channel

Sunday, August 11, 2013

New Ears Day!

A MOST UNBELIEVABLE DAY 
IN THE LIFE OF KATIE
Paul Tanner putting on the final touches Friday.  Note: KT was not allowed to see the real ears until he was completely done.
Once he was finished, Katie was allowed to turn around and see her final ears for the first time.  The photo above and below captured her reaction from two different camera angles.  You can just SEE the joy in her soul.  It was a very emotional moment for all of us!
 Then, she got to hang some earrings on those new ears!  This is where joy intersected with pure pleasure.  


By the time we got home, Grandma had posted this sign in the front window of her house, declaring it a HAPPY NEW EARS DAY!  There has been nothing but rejoicing since.