Friday, July 20, 2012

And in an instant...everything changes

Dusk's mom died in a car accident when he was 9 years old. My mother has faced cancer 3 different times. We've had 5 miscarriages and a Down Syndrome Diagnosis. And then there was Bodie.

You'd think we'd be used to it by now. Used to a stranger, walking in and uttering a sentence that alters the course of your life. You'd think we'd never get too settled by this point, knowing our seemingly even-keeled existence could change at any point. But, no. It catches you off guard every.single.time. The world shifts ever so slightly, and the way you thought things were...just isn't.

Dusk has been battling hip pain for months now, ever since his pacemaker/ICD implant in February. Some thought it might be related to the ICD, that his chest cavity (which also still hurts) was too tight and pulling his hip out of joint. So his doctor did an x-ray 3 months ago (all looked fine) and referred him to an Orthopedist. It took us 2 months to see him. He decided that we should start with Physical Therapy and referred us out. Dusk saw a Physical Therapist for a month, doing all of the stretches they recommended...and the pain got worse. It has become excruciating. There are days it hurts just getting out of bed. He called his Orthopedist and (only after threatening to leave the medical group) were they able to move schedules around to get him in before 2013 (I only exaggerate slightly). He had scans done last Friday and met with his doctor Monday morning.

Left Hip Necrosis. Recommended total hip transplant.

At 39 years old.

Yes, we're reeling. Not what we expected to hear. Of course we're grateful for a diagnosis and not to just keep getting passed between doctors. And we're grateful it's something that can be "fixed". But we're worried. We're worried because his hip looked fine 3 months ago and now has massive necrosis. Even the doctor was surprised at the rapid change. We're worried because his other hip has started hurting in the same way. Monday, the right hip looked fine. But so did his left hip 3 months ago. We're worried because his medical team at UCLA doesn't communicate with one another, and he gets passed from doctor to doctor without any real cohesiveness or a holistic approach to his health. We're worried about what a hip replacement entails, the surgery, the recovery. More than that, we're worried that something else far more serious is going on, and the doctors are going to let it progress while they "sit and wait."

So that is the plan. We sit and wait and watch it for the next 3 weeks and then just "see what happens". Sometimes, very very rarely, it can get better. But it's unlikely. Necrosis like this is typically seen from either excessive alcohol use or significant steroid use, or occasionally by a fracture that doesn't heal properly. Now, for those of you who know Dusk, he does brew his own (mighty fine, by all accounts) beer and drinks his fair share. But he was very open with his doctor about exactly how much he drinks and his doctor was equally open that his alcohol use is nowhere near the levels required to produce this kind of result, that "excessive" alcohol use is typically referring to the levels seen in an alcoholic, which Dusk most certainly is not.

His doctor is assuming his necrosis is cause by steroid use. Last October, Dusk was diagnosed with Meniere's Disease, a rare inner ear imbalance that can be treated either by steroids or dieuretics. The ENT he was seeing at UCLA wanted to try steroids first, believing Dusk would be more responsive to it. He was responsive, but after 2 weeks of Prednisone, they had to stop it because it caused such massive hip pain. The general consensus was that there was no way it could cause hip necrosis that quickly, but that clearly he was very sensitive to it, so it wasn't a good idea. He obtained a second opinion from the House Ear Clinic, they recommended diuretics, which he started. Within weeks, the disease was under control and has been since. In any case, it seems to be his opinion that the steroids are currently the most likely suspect for what we're now seeing with Dusk's hip.

The final theory, a fracture that didn't heal properly, might also be coming into play. Apparently, there was a fracture in the hip. Although Dusk doesn't remember fracturing his hip, he does recall a particularly painful day golfing that might have been when it occurred. As an aside, anyone who has watched Dusk golf would totally believe he needs a hip replacement because of his golf swing!

The orthopedist (who was not his regular doc - he was on vacation) was very short and to the point - next step is hip replacement. We're not entirely comfortable with this as it happened very quickly, and there are other options which he didn't even discuss with Dusk. So we are in the process of obtaining a second consult from within the UCLA Medical Group (which Dusk is a part of) as well as a second opinion from outside the medical group. Additionally, due to how quickly this progressed and all of the open questions and concerns, he'll be seeing his regular Orthopedist, who is now back from vacation, Monday morning.

So, as we face yet another challenge, we're asking for prayers for our family. Prayers for Dusk's body, that it would miraculously heal. Prayers that a second opinion would guide us to a doctor that might have a better solution. Prayers for a more holistic approach to Dusk's care, that we might find that at UCLA (or, that somehow another medical group might take him - UCLA will release him, but Cedars (where we hoped to go) won't take him mid-course of treatment; we'll have to wait until the next plan year, which begins in January). Prayers that he would stop being pulled from one doctor to another, waiting months between appointments. Prayers for significantly diminished pain for him. Prayers that this is not simply a sign of something much more serious underneath. Please blanket our family in prayers.

And, if you have a recommendation for an Orthopedist within the UCLA group that you like, who is open to more holistic treatments, please send their information our way. Also anyone outside of UCLA who you might recommend for a second opinion. Thank you so much!


  1. Dr. S. Charles Marshall is excellent. He is in Salt Lake City, UT. He is awesome and up to date on tons of new technology.

  2. Oh wow Amy! Definitely keeping your family in my prayers for better answers to come for Dusk. You guys have really been through the ringer here lately with his health challenges. {{{HUG}}}

  3. Prayers Amy! Cannot imagine how stressful this is... hang in there.

    Big Hugs

  4. Prayers are coming your way from the Caron family <3

  5. Oh, no! Covering your family in prayer! Please keep us posted and we'll be praying!!

  6. oh no...we will be praying. Matt just was informed by his dr that he needs to have hip surgery...nothing as big as a total replacement, so I cannot imagine all the emotions you are feeling with this's still so frustrating when you feel passed around dr to dr. matt works in medical devices so he , like dusk, knows what good medical care looks like, and by golly, he is going to move heaven and earth to get it...sounds like our hubbies would be friends! will pray...write as soon as you know more...

  7. Praying for you sorry to hear this.

  8. Hey All,

    I praying for Dusk & all of you! Sorry about this setback.

    George Landes

  9. Amy,
    This is crazy! We'll be adding Dusk's hip to our prayers!