Life Perspective After Chiari + Syringomyelia Diagnosis

When I was diagnosed and operated for Chiari 1 Malformation I had three young little ones, my oldest being in kindergarten at the time. So, I arrived to the ER in May 2013 and never imagined the diagnosis that would result from that visit.  You can read more in depth of my story in my post titled In 2013 Life Began with Chiari + Syringomyelia So, after the neurosurgeon came in to my hospital room and told me I needed emergency Craniotomy or brain surgery, I requested to leave home to get things in order before the surgery. The mom in me wasn’t ready for surgery, I wanted to get the house in order before my absence. I can’t ever seem to get my mind to stop, it just never stops. I was in observation for a couple days before my surgery day and during this time I was able to do homework with my daughter from my hospital bed. I was also able to inform her school of the situation that the family and I were having. It really did take a village to get through surgery and recovery.

 

Then you fast forward to 2017 when I had Laminectomy surgery for Syringomyelia, this time I had six little ones – and still do. The recovery hasn’t been easy but it’s also helped me see my husband and the little faces of God’s perfect creation looking back at me. Children really do give you the inner strength you thought wasn’t in you, the courage and fight you thought you didn’t have. I now, few years later look at this disease in a different perspective. I’m not well, probably won’t ever will be and that’s OK. It’s about accepting things for what they are and stop trying to change things that can not.  If I decide to physically shop at a store, I have to know the store, I have to know the layout, so that my shopping trip is as quick as possible. I like to call this my new normal as opposed to something being wrong. There is no normal, there is no right or wrong way your health should be. Also, know that you don’t have to try to make other’s understand what you’re going through, try to explain this rare disorder you find yourself living with. This could be such a burden and so frustrating. If you have even one person you can rely on, that’s great and if you know of another Chiarian, lean on them! Also, feel free to be present in your pain, know it’s OK to not have a good day when living with Chiari, especially when this disease is physically unseen, it’s an unseen disability.

-Ana

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Syringomyelia – MRI Post Surgery

I had an MRI following my November 7, 2017 Syringomyelia surgery. I had a syringo peritoneal-shunt placed, this shunt will remain in my body forever. This is the procedure that helps divert fluid from one space to another. The name for the shunt is given by the doctor and it’s based on where they start and end. The decision to do this procedure depends on the person’s health situation and the surgeons preference. A syrinx is also most commonly known to be a side effect from another health condition, in my case, I have Syringomyelia because I have Chiari 1 Malformation. A way the doctor would know if a syrinx is present is by performing an MRI of the spine. When I was diagnosed In 2013 Life Began with Chiari + Syringomyelia an MRI of the entire spine was immediately ordered to look for syrinxes. My most recent MRI was done a couple of weeks ago and shows how my syringo peritoneal-shunt has been diverted successfully to the peritoneal space or my abdomen.  It’s always good to continue to check on the shunt because it can fail after having had successfully worked. The failure of the shunt working may be due to various reasons one, the catheter becoming clogged and can no longer able to divert the fluid from one space to another. This failure in the shunt can be seen by MRI, the shunt will show being refilled with fluid or enlarged. However, one way of knowing a failure in the shunt is that you will notice the symptoms returning. My recovery from Syringomyelia surgery is expected to take about a year. I’m still feeling the numbness on my left side, weakness in my legs, numbness in my neck area and back which can only be described as cape like, among other things. The neuropathic pain I have is a type of pain that is difficult to treat as this is damage caused to the nervous system. However, it is found to be common in Syringomyelia patients.  As far as knowing for sure the long-term outcome after surgery, for Chiari related Syringomyelia although surgery will reduce the syrinx, research has shown to stop it from growing 80% of the time. Surgery however still doesn’t always provide significant improvements in symptoms and many people will still experience pain and other symptoms after surgery.

MRI – On the right showing syrinx and on the left showing post surgical placement of shunt.

-Ana