Fragility

Note: This post is an update for those who have been following what’s going on with Jen.  You can read more of the backstory here, here, here and here.

(Semi-creepy view of Jen’s cranial arteries.)

Another Expert

Last week, Jen had her first post-baby appointment with another member of the team of doctors looking into what’s going on with her head.  Actually, this was billed as a simple consultation with an interventional radiologist.  He was supposed to look over Jen’s existing scans and recommend whatever tests were necessary to get to a diagnosis.  We were fully expecting him to say that the next step was to have a cerebral angiogram (which Jen wasn’t all that excited about) and send us home.

We were not prepared to hear what the radiologist actually said.  He indeed had looked at Jen’s existing scans and said he could tell what happened — there was no need for any further tests.

Jen’s internal carotid arteries completely disappeared just behind her jaw (we knew that already).  It was the result, he said, of fibromuscular displasia (FMD), a condition that causes narrowing in certain arteries.  At some point — he speculated during Jen’s last two pregnancies — her internal carotids had dissected (i.e., severed).

This wasn’t great news.  We knew there was a possibility that Jen had FMD, but we were holding out hope for an alternative diagnosis which would mean that her internal carotids were missing as a result of a congenital defect, and that she had been living with that defect for a long time — perhaps her entire life.

He had some more not-so-great news.  Everyone who had seen her scans thus far had remarked about how clear and well formed her vertebral arteries are.  That’s important because, having lost her internal carotids, Jen relies on her two vertebral arteries to supply blood to her entire brain.  This doctor saw something different:  Jen had FMD in her vertebral arteries as well.  He could see some narrowing and weakening of the arterial walls in those vessels too.

As a result, a cerebral angiogram was contraindicated because there was a small chance that her vertebral arteries could be severed in the process.

Now What?

So what was to be done?  Not much, actually.  He said Jen needed to continue to take aspirin to keep her blood thin (likely for the rest of her life).  Other than that, there is no preventative treatment.

The doctor then listed off a few don’ts.  No roller coasters.  No chiropractors.  No sudden neck movements (yes, really).  No falling asleep on a long airplane flight without a neck pillow.

Strangely, the doctor made a concerted effort to sound upbeat, almost like he was telling us good news.  Just after telling us (1) that two of the major arteries in her head had been severed as a result of FMD; (2) that the two remaining major arteries also were affected by FMD; and (3) that Jen therefore had to avoid things like jerking her neck, he followed by telling us (in a pretty cheery voice) that she should just go home, enjoy her kids and otherwise go on living her life because it’s not that big of a deal.

Huh?

Turns out that he may be right about that.  There’s very little collective knowledge in the medical community about what to expect for someone in Jen’s position.  But it’s possible for people to live a very long time with FMD, even those who have experienced an arterial dissection.  Except in rare cases, FMD tends to develop slowly, so it bodes well that Jen’s vertebral arteries currently are in good shape.

So where does that leave us?  Good question.  We’re certainly going to seek out a second (and maybe third) opinion on whether Jen actually has FMD.  Assuming this latest doctor is correct, we know that Jen has lost a couple major cranial arteries and has some weakness in her remaining arteries.  They may or may not be . . . fragile.

A Reminder

In other words, she’s kinda like anyone else.  I hate to break it to you, but you’re fragile too.  So am I.  The Bible compares us to that great symbol of strength and power — grass.  As Peter put it, “”All flesh is like grass and all its glory like the flower of grass. The grass withers, and the flower falls, but the word of the Lord remains forever.”  We’ve been directed to call 911 if Jen ever experiences stroke-like symptoms.  As Charlie Sheen put it, “Duh.”  But if I find out six months from now that I have a brain tumor, who will be the fragile one?

I’m praying that Jen’s vertebral arteries would remain whole and that she will be able to embrace her fragility with strength and grace.  In the meantime, we’ve been reminded of the pressing need to redeem each day because our days are short.

Only one life, ’twill soon be past.

Only what’s done for Christ will last.”

In other words, don’t waste your life.

Advertisements

10 thoughts on “Fragility

  1. I love the way you wrote this, Shawn. It is the absolute truth. We love you guys and will be expecially praying for peace as you live with this “new normal”.

  2. Thank you for the update and the great perspective. God is good… Jen’s pregnancy prevented you from doing some more risky testing. Praying for you guys and we certainly do love you all!

  3. Thank you for the update. Our thoughts and prayers are with Jennifer, you and the children. If there is anything we can help you guys with, please don’t hesitate to ask. San Diego is not that far, really. Love you guys. God Bless!!

  4. There is only one real physician. All the rest are sheep in scrubs. I love you guys and will be consulting with him on your behalf.
    Blessings and peace, brother.

  5. Shawn & Jennifer – thanks for the update. We will continue to pray for all of you that God’s word will continue to provide strength and peace.

    “And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.” 2 Cor 12:9

  6. Thanks for so skillfully writing this Shawn. We will just have to be praying for the Lord to heal Jennifer completely. In the mean time, I know the Lord will be glorified in your godly attitudes. We love you guys. Please let us know how we can help in any way.

  7. Dear Shawn,

    I am saddened by this news and didn’t have any idea that Jen was living with this illness. I have been praying for her since I read your blog. Thank you for sharing. I was unaware of the circumstances. Please keep the faith and know that you, Jen, and the kids are in my prayers. A friend of mine gave me this prayer when I was diagnosed with cancer and undergoing chemo. I would like to share this with Jen. It has given me strength and hope that it will help her as well. Please know that I am here for you and do not hesitate to call. Am just a stone’s throw away.

    Healing Prayer

    Heavenly Father,
    I call on you right now in a special way
    It is through your power that I was created
    Every breath I take, every morning I wake
    And every moment of every hour,
    I live under Your power.

    Father, I ask You now to touch me with the same power
    For if You created me from nothing, You can certainly recreate me
    Fill me with the healing power of Your Spirit
    Cast out anything that should not be in me
    Mend what is broken
    Open any blocked arteries of veins and rebuild any damaged areas
    Remove all inflammation and cleanse any infection
    Let the warmth of Your healing love pass through my body
    To make new any unhealthy areas so that my body will function
    the way You created it to function
    And Father, restore me to full health in mind and body
    So that I may serve You the rest of my life
    I ask this through Christ our Lord. Amen.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s