Molly & Chiari Update 4.27.12

Here's the latest on Molly, with a bit of an overall recap because I keep getting questions that I have only answered in some places. Here's where she (and we) arel. I have been cautious about posting some of this because when improvements come, sometimes they go away again. But things, at least at this point, are looking up in all areas.

MOLLY'S CHIARI SYMPTOMS

Molly's Chiari symptoms have included brain fog (significant difficulty thinking about most anything), balance, muscle fatigue, being easily overwhelmed, and more. I can say today that all these symptoms have been slowly going away for a couple of weeks now and mostly gone! She is back at work at our local elementary school. It's still more difficult than before all this, but she can do it now. Because the symptoms are going away, she's also able to be more involved with our church. Just a couple of weeks ago the slightest bit of loudness or being in a conversation with friends could easily overwhelm her. She would walk out during songs because it messed her up. And then it would devastate her ability to do anything for the rest of a day. Now those moments aren't happening nearly as fast or often, during gathered worship or elsewhere. I'm still protecting her quite a bit until I'm confident she's stable in her health, but things are improving significantly and she is able to do a lot more. God is so good.

MOLLY'S SLEEP

Molly's biggest problem at this point is sleep. Bad sleep = worse symptoms all around. But praise God her sleep is improving too!

Until a couple of weeks ago, she only had a slightly better night's sleep here and there, but nothing to write about. And when I say "slightly," I mean she slept maybe a couple of hours a night, and even that was intermittent. Now she's about 5 days in to an improving sleep schedule. A few days ago she mentioned that she was sound asleep when the alarm clock woke her. That was the first time that happened in months. Typically she was not falling asleep, not staying asleep, and wide awake long before time to wake up (which was 5am!). Now, all elements of sleep are getting better. But this is the area of greatest concern at the moment and we are guarding her sleep schedule.

Just to be clear on a couple of things...

• MRIs: Nothing shown to be wrong. Nothing can be surgically fixed.
• Neurologist: Dealing with symptoms and sleep issues. Seems to have helped slowly but surely. Probably won't meet or change anything with these solutions for a while.

Thanks for all your prayers. Pray her health and sleep continue to improve!

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 4.5.12

MRIs

Molly's neurosurgeon has now seen her new battery of MRIs. He says from a surgical perspective, there isn't anything wrong. Spinal fluid flow is excellent. Decompression (space created for flow from first surgery) is still good. They thought a lumbar puncture (spinal tap) might help if there is increased pressure from too much fluid, but she's had that looked at twice in the past and it's never been an issue.

They don't really have any suggestions otherwise. It's basically out of their hands. And that means we don't have reason to believe surgery of any sort is even a thought, at this point.

So for the moment we are keeping with the strategy Molly's neurologist has in place to relieve some of the intense & overwhelming reactions Molly is having to everyday things through some medication. So far they seem to be helping. It may just be that life is a bit more intense for her, and we just deal with the symptoms. It may be that over time the symptoms will subside, and we are certainly hoping that will happen.

MOLLY

As I said, Molly is having some positive reaction to some medicine she recently started. I can say that clearly the last three days have been significantly better than the last 30-40 days. She has more energy, though it's still not anywhere near normal. Yesterday we went shopping at Wal-Mart to see how she would react. She was better than weeks ago, but after coming hope fell asleep on the couch. 

Today, Molly went to work. So far she is a little overwhelmed, but seems to be dealing with it ok the last I heard. She is going to call in a bit during her lunchtime to let me know how she's doing.

We are encouraged by the last few days, but still very concerned and guarding her time until we see if this is a genuine turn toward the better. 

OTHER

Our church and community has been so generous. We've eaten well as many meals have been provided for us. Bags and bags of groceries have been bought and brought to us. Steaks for the grill are marinading in the fridge as I type. We are blessed and thankful for the many local friends who have helped so much.

We are overwhelmed with the many who have prayed, called, written notes and emails, given gift cards, and blessed both locally and from afar. We love all of you and you have made this difficult time more bearable. We don't know if we may be seeing a light at the end of this tunnel for Molly's struggles or if things could turn worse again. But we know you all have our back, and we are very, very thankful.

Last word for now: We have seen our kids learn to pray and trust God better during this time. God has been good to us and is teaching us a lot. I want to talk more about that, but I'm not ready to yet. And we are confident that He will continue to bless Molly and our family far beyond our expectations. To God be all the glory. 

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.