A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Wednesday, May 18, 2016

Second Thoughts

When we first decided on surgery I felt like a weight had lifted. We had a plan.
But that lasted, maybe a couple of hours.

Then all these questions started flooding in.
What does surgery mean? What will he be doing? Not specifically, but what does he mean by the shunt, is it permanent or will it be removed? Where does the shunt go? What is the recovery like and what kind of incision is there?

I posted some information on one of my parent groups and that just created more questions!
I had a couple of people respond with their experiences with a spinal cyst; decompression surgery, spinal shunt and/or tethered cord surgery  (and they were the choices given by Dr Rutka).
And none of those things I really wanted.

Decompression and Tethered Cord surgery are things that I have learned about spina bifida through the years.
  • The thought of a decompression makes me feel sick. A decompression will treat the chiari malformation by removing a part of the skull. And I don't really think that is the issue. Except that most of the things that discusses a syrinx is paired with chiari malformation.
  • Tethered Cord surgery is something that has always been in the back of my mind. The spinal cord is caught in scar tissue from Nick's original surgery to repair his back when he was born. As he grows bigger and taller the cord starts to get stretched and damaged. Surgery will release the spinal cord from the scar tissue. But any surgery creates more scar tissue.
  • Spinal shunt is what we said we would go forward with. But what is involved in a spinal shunt? Of course I googled it. But I don't want to make decisions on google. So I emailed our nurse a bunch of questions and she made us an appointment to talk with Dr Rutka again.

After talking with some of the parents I am wondering if we should look at tethered cord surgery as well? I don't want to do anything if we don't need to. But I don't want to not do something that maybe we should do.

It is so hard to be a parent right now!
Wondering if we are making the right decision. But then I think about how this has been a concern we have had since last summer. When Nick needed to have higher braces and we talked to Dr Rutka about that. He ordered the MRI, which we got in February, results in March and here we are in May.

Nick's need for higher braces is still there. The independent steps he took in November is still missing. Even looking at the picture above. He is needing to bring his knees in to balance himself. I can see him moving better and getting stronger with his crutches, but I still feel that he is losing something.
He also has started to feel his feet again. I think part of it is that he doesn't want surgery, but part of it is that he has more feeling than a couple of weeks ago... at times. At other times (like when his feet are cold) he still doesn't feel it. Kyle and I have both been testing them. There are times he feels them, but there are also times he doesn't.

I still have questions and options. But we have another appointment with Dr Rutka at the end of the month. I am planning to be fully prepared with written questions to ask, and Kyle will be there.

We also have a surgery date. June 16th.

I spent all weekend covering my shifts at work. As well as worrying and wondering. Wanting to know information, but trying not to just google everything. And a syrinx is considered to be a rare medical disorder, secondary to something else, so it is difficult to find valuable information.

It has been over a week since we made the decision for surgery and got the date.

I have felt stressed and anxious. Up until Monday all I could think of was the surgery and the choices and what to do. I thought about it, I dreamt about it. But I've been trying to distract myself. Breathing exercises and my new mantra

I have been feeling better about it the last couple of days. One reason is  because I couldn't keep going on like that. And there isn't anything that I can do. I have to trust that we will make the right decision and trust in our neurosurgeon.

And blog. Which usually makes me feel better

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