It's been a long two years of struggle for especially Cece, but really the whole family. It's been so hard watching her suffer...not just with the pain debilitation she's been through, but with her whole life increasingly on hold.
As many of you have seen, Cecelia's had periods of- for lack of a better term- seizures brought on by noisy, busy social situations. Such as school and church.
Along with the seizures, a constant headache (increasing to intense at times), tiredness resulting in long periods of sleep, and most recently, leg and arm weakness. At the end of the pre-surgery time, she couldn't walk without support.
Possibly the hardest part was the effect it has had on her whole life. Imagine being a junior and senior in high school and not having the ability to be with friends. Friendship's a two-way street, and if you can't spend time with people, it's hard to stay close. She's been sad that's how it's been...not that she's blamed anyone, just that her condition caused it. It's hard to have a relationship when one person's sitting and watching other one sleep all the time.
Also, she's graduating this year. She's planning to move to Washington after graduation to live with her sisters already out there, and is so excited...but we all wondered how it was even possible when she had this condition the medical community wasn't able to diagnose, let alone treat. So she's been in limbo for quite awhile.
In spite of it all, she'll be graduating with an almost 4.0 and as a member of the national honor society. We're so proud of her for achieving this in the face of this trial!
We knew from the beginning of her symptoms (due to an MRI) she had this cyst in her head. It's called a posterior arachnoid cyst, which is basically a water sac in the back of the skull just above the brain stem. Hers was pushing into the cerebrum part of her brain, which has a lot to do with motor skills, as I understand it.
But the cyst was comparatively small, so the initial diagnosis was that it didn't have anything to do with her symptoms.
So for the next two or so years, she was treated for depression, anxiety, and seizures with medicine, and with psychological counseling thrown in.
Some of the treatments helped, but the symptoms never went away. The final straw was when she lost strength in her legs at school, and the school nurse (who had been helping deal with her seizures on an almost daily basis) told us to get her to the emergency room in Sioux Falls so she could be tested and seen by the best doctors.
We did this...they ran a huge battery of tests, including bloodwork, a lumbar puncture (to test spinal fluid), and urine tests, along with a CT scan and probably other stuff I can't remember. Everything came back fine.
We had another MRI scheduled in Watertown shortly after this- the first one since the initial one when the symptoms started- so we had that done, followed up by an appointment with a neurosurgeon at the Sanford surgical facility in Sioux Falls.
Dr. Trumble's his name. It's like a miracle he was there- he'd been hired from Tampa FL just six months ago, and his specialty is in dealing with just her condition. In fact, he's a member of- I think even the head of- a national panel of doctors who study and do research on these cysts. So we feel well taken care of.
After reviewing her case history and studying the latest MRI results (the cyst hadn't changed since the first one two years earlier), he agreed it was time to have it removed. Cece was so happy she cried when he announced it:)
He explained we'd done nothing wrong in how it had gone...as I said before, her cyst was pretty small compared to many he operates on, so all the other stuff Cece and gone through was necessary to make sure that was the problem. He said he wouldn't have recommended operating two years ago, either.
So we scheduled the operation...it was amazingly soon after the consultation. Just a couple weeks.
The operation went well- he said afterwards the cyst wasn't very big (which we knew), but it had a fair amount of pressure in it.
The unexpected find was a damaged nerve that runs up the back of your neck and provides sensation to the sides of the scalp. Its called the Greater Occipital Nerve, and it was swollen and inflamed to about three times its normal size.
This was actually a good thing...it explained some of the symptoms she was having that couldn't really be attributed to the cyst, and I believe part of what made it so hard to diagnose her condition. Dr. Trumble said the irritated nerve isn't something you can see on an MRI, so it was a chance discovery in the course of the surgery. He cut out a couple centimeters of the nerve, which will make her a "numbskull" on the right side of her head for a couple months. He explained that the nerves covering the front areas of the scalp will grow back and fill in where that nerve is now dead.
After 5 days in recovery, she came home and started mending. After about four days of increasingly good days, her headache started coming back. She said it was different than the pre-surgery headaches, but hurt just as bad.
A few days later (Saturday night last week), Anna told me she'd probably end up taking her into the emergency room, and at five in the morning, she did. Her headache was so bad she was throwing up.
Because she'd been running a fever along with the headache, there was a concern meningitis might be present- which can be deadly, so they life-flighted her down to Sioux Falls. Meningitis is an infection in the spinal fluid. That's a basic explanation, but what it boils down to.
You sure learn a lot about medical conditions when going through these kinds of situations!
Monday morning, Dr. Trumble came in, took some spinal fluid out of her neck to have tested, and diagnosed a leaky stitch in the dura mater tissue layer surrounding her brain. It was a layer he had to make a straight incision in to get to the arachnoid layer, which was where the cyst was. Now instead of having two layers of tissue to hold the fluid in, there was just the one, and it seems to have sprung a leak. The leak was causing the spinal headaches, which was what she was suffering from in the days before coming back down to Sioux Falls.
I'll let Anna take over the story here- and correct the mistakes I made and fill in the gaps- as she's been the one staying down there with her and is more in the loop.
There have been some more unexpected twists in the story...we're not out of the woods yet.
I also want to say thanks for all the Christians' prayers and help through all this. I don't know how we'd have made it even this far with out your love.
