Weathering Chiari

It has been six months since I had brain surgery. Sometimes it feels like it has been so much longer, other times it feels like it happened yesterday. I’m grateful for the surgery, for all the symptoms it has relived. Mainly the horrible head pain in the back of my head. The symptoms are still there, they come and go, but it’s bearable now. There are some days though, when the symptoms are bad, but I’m still in the year of healing.

There are still many sleepless nights. Last week, I had one of my worst nights since surgery. I could not get comfortable because of neck pain and just felt restless. Before surgery, I had an in-lab sleep study done. The sleep clinic determined that it took longer for me to reach the different stages of sleep and that my brain would wake itself up for no reason. I am going to do another in-lab sleep study in the coming weeks. The sleep clinic wants to make sure that I don’t have central sleep apnea, which is a risk with anyone who has had a brain infection, or their skull broken.

I’m still working with my physical therapist for my neck. I am mostly just doing a few stretches to help loosen my neck and a few sets of exercises to help strengthen my neck. Usually when I go there though, the therapist massages my neck to break up the scar tissue. Sometimes, the massages feel nice and help me relax and other times it is a little uncomfortable and I’m really sore for quite awhile. After I have physical therapy, I am supposed to just rest with no brain stimulation. That means laying down and not watching tv or reading a book, I can listen to music though, for an hour after my session. Last week, I had an x-ray done of my skull, so the therapist could see exactly what was done with C1. You can see the titanium plate that was put over my dura after they sealed it with some of my scalp tissue. That x-ray was taken with my mouth open, looking through my throat.

 I have also started swim therapy in the pool. I mostly just walk laps around the pool and then do a few exercises, like squats or leaning against the wall and pushing a small weight around underwater. The physical therapist, who is helping me with the swim therapy, has identified some spatial awareness issues and some balance problems. For example, I don’t always know where my arms and legs are in the pool. She had me stand on one leg, which I thought I did fine for someone who had brain surgery. Then she had me stand on one leg again, only this time counting backwards from twenty. I could feel myself swaying a little bit more and I had a harder time saying the numbers. I knew what the number was, it was just harder to grasp. The therapist explained that there was a very noticeable difference and that what was happening was my brain was getting overwhelmed and switched its focus from balancing to counting. It let go of its awareness of itself to concentrate on the numbers. She used the analogy of walking and chewing gum. I can walk and I can chew gum, but I can’t walk and chew gum and the same time. My brain gets overstimulated. The therapist both think that because I was deconditioned before surgery, I am having a harder time now. I feel so weak sometimes.

The pool therapist recommended that I meet with a neuro therapist to help me with the balance issues, spatial awareness, overstimulation, postural awareness (my brain does not know how to hold my body), and other neurological symptoms. The only neuro-therapist is at OHSU, so we are going to discuss it at my next appointment with them tomorrow.

OSHU Neurology: Tomorrow’s appointment is my three month follow up, although it took four months to get the appointment, with the neurologist.  I am not really looking forward to that appointment. I’m actually dreading it. The last OHSU appointment was a hard blow. After coming home from my very positive, two-month surgery follow up, with the Neurosurgery team in Colorado, OHSU had a whole different take on my health.  They are concerned I may develop ALS. They diagnosed me with Benign Fasciculations Syndrome. The neurologist said that it could just stay Benign Fasciculation Syndrome or rapidly progress to ALS. It’s hard to be working so hard with physical therapy and then just have that burden thrusted on top of everything. Sometimes it feels like a weight pulling me down, a mental block.  

There are moments where it all feels so overwhelming. I cannot really imagine what my future looks like beyond where I am at right now. There are still so many sleepless nights, deep fatigue, neck pain, and so many unanswered symptoms.

 I am having new symptoms which I didn’t have before surgery. My primary care doctor, physical therapist, and neurologist all recommended that I call the neurosurgeon and get some feedback on where I should be and what I should be expecting at this stage of healing. We spoke with them today, they said they don’t think my symptoms are neurosurgical, they think they are more neurological. So, not caused by Chiari Malformation, but something more neurological. We decided the next step would be to have a brain MRI-with and without contrast, along with a cervical spine MRI-with and without contrast. Once we get the MRIs back, we will regroup and go from there.

Please pray for this appointment with the neurologist at OHSU tomorrow. That God would give the neurologist wisdom and insight. That there would be answers. Pray also for me as I continue to go forward with the recovery. I am tired of all these appointments and unanswered questions that continue to hang over me. It is still so hard and discouraging at times, my heart feels heavy, and I feel weary.

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There are days where I’ve had enough. Enough with the pain. 

Enough with the symptoms.

Enough with the fatigue and sleepless nights.

Enough with doctors’ appointments and physical therapy. 

Enough with always feeling sick and worn out.

Sometimes, I think about the life I had and the life I want compared to where I am, and I feel so much despair. I am so far from where I want to be, from where I thought I would be. My mind will drift sometimes to a bunch of “if only” and “what ifs” and I ask the question, why? Why did was this diagnosis not caught sooner? Why did it have to happen when it did? Why is it still happening?

Well, I don’t know. What I do know is that I don’t need to have it all figured out and everything right for God to love me. I don’t need to have my life all “perfect” for God to use me where I am. There is not a checklist of accomplishments and requirements of where I need to be in life. I long for better days to come, but I am enough for God where I am right now. Taking one day at a time, trusting God and walking with Him through this valley and resting by still waters.

“The Lord is my Shepherd; I shall not want. He makes me to lie down in green pastures; He leads me besides the still waters. He restores my soul.”

– Psalm 23:1-3

My Chiari Bear doesn’t have a name yet. Any suggestions???

Than you all, again, for your continued prayers and support.

Under Aslan’s Paw,

Shae Sobottke