Molly & Chiari Update 4.12.12

Update 4.13: Molly slept terrible last night. Terrible. She is exhausted. She saw her neurologist today. He is trying to manage her sleep, or lack thereof, and we have no idea whether it will work. Nothing has helped so far. We should know in a couple days. I'm not sure I've seen her this frustrated over her health since 2008. Thanks for continued prayers.

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Brief update (4.12): Molly had about 5 better days in a row after some significant time off of her part-time job at the school and a lot of rest. Still not great, but better. More functional in daily life. Some of her brain fog issues have gone away for the most part, though she has remained easily exhausted.

The last two days things have turned worse again. She's barely sleeping, and we can't figure out why. We assume it's making symptoms much worse. It's been linked to times of increased symptoms in the past. I'm taking her to her neurologist tomorrow morning in the hope he'll take this another step and figure out what, if anything, can be done.

We are hoping for answers soon. We are praying for God's help and healing, and for her to continue to place all of her hope in Christ when circumstances at times feel hopeless.

Molly & Chiari Update 3.26.12

As we continue to wait for some news of Molly's MRIs from her neurosurgeon, we decided it would be good today to have her see her local physician. She got to see Molly's symptoms in full bloom. Really bad. Lots of tension, emotion, frustration. But those things helped her doctor to see all that's wrong and the need to do more.

Molly had a blood test to check a number of things. Her neurosurgeon thinks it's possible there are other issues that are making her symptoms worse. It's at least worth a try.

Molly now has a neurologist appointment tomorrow at 11:20am. We are hoping that will offer some answers, or at least get some fresh eyes on her problems and see what comes of it. 

Just trying to keep everyone in the loop. Thanks for your prayers! Many local friends have been generous and supportive. Very thankful for that.

Side Note: Notice in the picture how Molly is gripping her knees tightly with her hands. She didn't know I was taking this, but she is continually experiencing that kind of physical tension and mostly can't help it. Thought it might be helpful for you to see something like that, which I didn't notice until after I took the picture. Also note, the room was decorated in Cubs paraphernalia, which means she's doomed to at least 100 years of frustration. :)

Molly & Chiari Update 3.21.12

MEDICAL

Molly had her MRIs done on Friday at the University of Wisconsin Hospital. They went relatively quickly, but it was a long day. Saturday we mailed the CD of the imaging to Dr. Frim at the University of Chicago Hospital. Hoping to hear from him today or tomorrow. I'll update when we know something.

MOLLY

As best as we can remember, the last 10 days have been the worst stretch of the worst symptoms ever for Molly, including the weeks leading up to her previous surgeries. Mentally for her this has been really difficult. She almost never finishes a sentence or thought without significant pauses to gather her thoughts. About half the time she just gives up trying to say it. 

She has very little balance. Extreme fatigue and weakness. She was so bad on Monday that when she got to work (part-time at local elementary school) a couple of friends in the school office saw how bad she was doing and had to drive her home. She's probably done driving unless things improve. She pretty much never walks anywhere unless she has something to help keep her balance. She's almost fallen a couple of times. 

As a whole, life itself is very overwhelming for her. Just leaving the house and being around anything that isn't very familiar causes her great mental stress and leads to physical tension. Her whole body will tense up very tight and see has difficulty stopping it. It's an internal reaction to things she can't control. 

With a couple of days off of work and staying home more, she's at least feeling a little less tension. The symptoms are still there, and she's very emotional. But we hope a rest might help.

ME

I'll be honest. I feel very frustrated. It's tough looking at my beautiful wife and see so much pain and frustration and sadness in her eyes. It's tough seeing her struggle to say even a simple thought. It was painful last week to see her near meltdown in a grocery store. I had to spend several hours last week dealing with doctors & insurance & hospitals on the phone and email because the hospital required something unnecessary from our insurance company. It was a total mess. In the end we got it straightened out. And I'm sure it was a simple mistake. But it made my week miserable.

GOD

We can't help but wonder about these difficulties and what God is doing. The things we are working on most in our church are the things we are finding most complicated now with Molly's needs and struggles. Spending time with others, even those we know the best at Doxa, is great strain and increases her tension, quickly leading to exhaustion and other symptoms. The spiritual warfare aspect of this seems clear. It's changing the way I'm praying.

We continue to talk and pray together about the goodness of God, His ability to heal and our request that He would heal Molly, and His power made perfect in weakness and the possibility of the weakness remaining rather than being taken away.

If you would, say a prayer for Molly and our family.

Molly & Chiari Update 3.7.12

UPDATE 3/7 at 4:20pm: Molly's MRI has been scheduled for 2:30pm on Friday, March 16th at the University of Wisconsin Hospital in Madison. Last time it took just over 3 hours (if I remember correctly). 

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It's been a long time (over a year) since my last post on my wife's 4 1/2 year struggle with Chiari I Malformation. Find out about her diagnosis, symptoms, surgeries, and more in my series of posts: Molly & Chiari. Here's a brief, but important, update.

Molly's symptoms are returning in a significant way. This has happened before, as you can note from previous posts. A few times they have subsided. But they don't always, which is why she's had brain surgery twice. We live with the understanding that at any point something can happen that causes her spinal fluid flow to decrease and that would result in another surgery. Her stent could dislodge or clog. Scar tissue could form around it. Or maybe something else we don't anticipate.

Currently her symptoms are headaches (significant ones, some have led to vomiting), numbness in hands/feet, difficulty thinking or "brain fog," balance problems, continuous physical fatigue and weakness, nausea, waking without feeling rested, etc. She is easily overwhelmed. A trip to the store with all the colors and sounds and busyness can be difficult for her to endure. At times she has to find a quiet place and just stop because of the sensory overload.

This time around the symptoms have started and have kept increasing over a longer period of time. That may not mean anything significant and she may eventually recover. But it's bad enough right now that her neurosurgeon, Dr. Frim, wants another set of MRIs done. I've been emailed the MRI order just a few minutes ago and we will be working today to schedule an appointment as soon as possible at the University of Wisconsin in Madison. After reviewing those images, Dr. Frim will be able to see if something is wrong and if we need to make an appointment with him.

We'd appreciate your prayers for healing and strength for Molly. For comfort. For peace in times of great frustration. For a deep trust in the goodness of God. For me as I need to serve her well, help with the house and kids, help her shop, etc.

Thanks as always to the many friends (and many others we've never met!) who have been prayer warriors on Molly's behalf. To God be the glory.

Molly Update 11.9.10

It's been a long time since I gave an update on Molly, mostly because there has been nothing new. She has been great. That started to change a month ago. 

Over the last month Molly started to experience small, though not insignificant symptoms from Chiari. Read all the old posts on Molly & Chiari. Or check out an initial post from 2007 on what Chiari I Malmformation is.) On Friday she woke with a massive headache that caused her to vomit most of the day. Late Friday that was done, but other symptoms began and were full-on. She easily loses her balance, struggles to finish thoughts (brain fog), gets easily overwhelmed, has significant muscle weakness and some numbness in her arms and legs, and more. It's been consistently bad since Friday.

That's not a long time, and she has dealt with some symptoms from time to time and had them subside. That happened last year. But it hasn't been this bad since before her last brain surgery. We still are hoping and praying for the symptoms to go away, but they are bad enough that contacting Molly's doctor was necessary.

I emailed Molly's doctor, Dr. David Frim, at the University of Chicago Hospital. He responded today and said that it's time to initiate another evaluation. We are waiting for his assistant to respond and, we assume, make an appointment for us at U of C. We don't know anything about what tests that may require (MRI, spinal tap, etc). 

We have prayed for the symptoms/problem to go away, but were talking today about how God's power will be made perfect through her weakness (2 Cor 12). I'm assuming that's why she wanted me to use the above graphic for this post. :)

I'll post more when we have more info. If anyone can pray, please pray for God to be glorified through this, and to be merciful to Molly.

Also, if you can, pray for me as I will be spending a significant amount of time with her as she is losing ability to be out of the house for an extended period of time on her own. We ran errands on Monday and I don't think she could have done it without me there. This is on top of tough times in our church where money is tight and I'm busier than I've ever been. This is going to put significant strain on our family and we need His strength for all of it.

Thanks friends. We appreciate you.