In December, Sarah’s neurologist ordered another MRI of her brain. Because Sarah has a Vagal Nerve Stimulator (VNS) implanted in her chest, she is only able to have MRIs done at Riley Hospital. Her VNS has to be turned off before she enters the MRI area, then she is placed under general anesthesia, and then the VNS is turned back on again after she wakes up in recovery. It should only be off for about half an hour.
However, in this instance, the radiologist reviewed the MRI images immediately after the MRI and saw something suspicious. He requested further imaging right away and asked for Sarah to be placed back under anesthesia again. After the second set of images were completed, Sarah went back to the recovery room and was able to fully come out of anesthesia, and her VNS was activated again.
She had a grand mal seizure on the way home from Indy that day, which I believe was a result of her VNS being shut off for nearly three hours that day, instead of the expected thirty minutes. Of all the situations her health has put us in, this was one of the toughest for me. I was driving alone on I-465 in Indianapolis and had no place to pull over when the seizure began, and I felt completely helpless. Right before it began, Sarah shouted, “Something’s happening! Mama! Help me!” Her tiny voice broke my heart. I am so thankful that between her anti-seizure meds and VNS, she doesn’t seize like that very often at all anymore.
A couple of days later, our neurologist called with the MRI results. The radiologist noted a lesion on Sarah’s left thalamus. We were told that it’s in the area of her brain responsible for movement, memory, taste and emotion. Makes a lot of sense, considering she has a very unbalanced gait, has word recall issues and memory lapses. She has never been able to accurately describe how foods taste; she will say lettuce is too spicy, but she’ll eat jalapeños like they are popcorn! She has also experienced a wide array of emotions lately, which we attributed to puberty and hormonal changes, but now that we know there is a spot on her brain, we aren’t exactly sure which is to blame.
Our neurologist referred Sarah to a neurosurgeon, and we saw him the following week. He was quick to inform us that the lesion is a small tumor that is buried so deeply inside her brain, he can’t even biopsy it safely. Thankfully, the neurosurgeon believes that the tumor is benign and won’t cause any serious problems! The plan is to watch it and wait to see if any further complications develop.
As soon as the wave of relief washed over me, the doctor took another breath and said, “However.” That word used as a segue immediately following GOOD news usually indicates BAD news... and this was no exception.
This MRI also showed that Sarah has something called Chiari malformation, a condition in which the brain tissue extends into the spinal canal. It can cause a lot of the same symptoms that Sarah already experiences as a result of mitochondrial myopathy, so the difficulty becomes being able to differentiate between the two causes for her muscle weakness, unsteady gait, worsening speech and swallowing abilities, etc.
One of the more distinctive features of Chiari malformation is headaches and pain in a specific spot of the neck, both of which Sarah began experiencing over this last summer. Coupled with her diminished gag reflex and several other concerning symptoms, our neurologist feels that it’s time to strongly consider a decompression surgery. When we saw the neurosurgeon in May, we discussed the possibility of a corrective surgery in the realm of “someday” and “down the line” ... it never crossed my mind that we would arrive at this decision making process so soon. It doesn’t quite feel real to me yet, it hasn’t entirely sunk in yet.
This Friday, we will be returning to the neurosurgeon to discuss whether or not now is the right time to process with surgical intervention. I’ve attached an image that shows, in a nutshell, what the surgery would accomplish, but of course, it’s much more complicated than that. Our hope is never for invasive procedures, especially considering the fact that this would be surgery #26 for this sweet girl.
We are more than aware that surgery of any nature carries a greatly increased risk of complications for Sarah due to her respiratory failure and mitochondrial myopathy. A surgery of this type brings a whole new world of scary that hasn’t been on our radar in the past.
Our neurologist explained it best when she said, “We can’t fix mitochondrial disease. It’s progressive. It’s terminal. We know that. It is what it is. But we CAN fix Chiari malformation; and what if that makes all the difference for Sarah?” She makes an excellent point... one that points directly toward hope for a brighter tomorrow.
My prayers, in the days leading up to this appointment, are for wisdom, discernment and confidence for Sarah‘s dad and myself, as we navigate yet another seemingly impossible decision. For the neurosurgeon, to be aggressive enough to tackle what’s truly needed, but also knowledgeable enough to know if we should continue wait. And for Sarah, whose unabashed strength and determination make me so proud every single day.
Thank you all for your prayers and support! Every person who has reached out with a Facebook comment or a text has changed our outlook for the better, and we appreciate your love and encouragement more than you could ever know! Please keep the comments coming, as Sarah is even beginning to ask to read them herself sometimes! :)
Thank you for reading... I will try not to wait so long for the next update! ❤️
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