KEEPING IT REAL: Sharon’s Story, Part II

KEEPING IT REAL: Sharon’s Story, Part II
Posted on Tue 8 Oct 2019

SHARON’S STORY, PART II*

It’s been exactly 100 days since my selective dorsal rhizotomy (SDR) surgery. 100 days. How do I begin to articulate all that has happened these last 100 days?  I’ve often wanted to post updates, but so much is still uncertain that I freeze before I get the words out.

The bottom line is that preparing for this surgery and actually going through it are two very different things.  For example, I was told that my legs would feel heavy or numb. What I’ve found instead is that since a few days post-surgery, my legs feel like they’re wrapped in duct tape and sand. At night, I’ll even reach down to the bottoms of my feet in an attempt to remove the paper and tape that feels like it’s stuck there only to find it’s all in my head. I’m told that in time these sensations should lessen and overall, I’ll start to feel normal again. I’m just not there yet. Once again, I’m impatient and frustrated. And there’s very little that can be done to speed up this healing process.

Beyond that, the hardest thing to acknowledge is the reality that my foot pain persists. And in some ways, combined with the weird nerve sensations and pins-and-needles sensation I feel as the nerves heal, it’s almost worse.
This is Day 100 — but this is only Day 100. There are so many more days to go and this is the plan: in 23 days, I have my four-month follow-up appointment with Dr. Park. At that time, I’ll also have another meeting with him and Dr. Dobbs, a wonderful orthopedic surgeon at St. Louis Children’s Hospital, and their team of physical therapists and other providers to determine what to do next.

Most likely, it will be more surgery. And most likely, that surgery will happen days later. My doctors need to see if I’m strong enough for more surgery at this point, and they also have to do their best to help me decide whether the benefits of an orthopedic surgery outweigh the challenges of recovery.

As with many SDR patients, the team is looking to do a PERCS surgery to lengthen muscles that are causing tightness and pain in my right foot. The kicker is that the recovery for a surgery like this is long. I’ll just leave it at that. And the doctors still can’t guarantee that it will do anything for my foot pain. That’s because some of this pain is likely due to the foot fusion surgery I had when I was 15 and that’s something that can’t be undone.

So, there you have it. As you can imagine, my family and I have and continue to wrestle with this reality, and it’s been difficult. We continue to pray for a miracle while also seeking the best doctors in the field.

I say all this to ask again that you continue to keep me and my family in your prayers. Pray for my healing, pray for strength. Pray for the emotional, mental, and spiritual well-being of me and my loved ones as they are on this journey with me.

We are forever grateful for all of you — even those of you we don’t know personally.

Keep an eye on the blog for more about Sharon’s experience and recovery. We’re cheering her on, as always.

*Sharon’s story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them.  The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

Cerebral Palsy Alliance Foundation (CPARF) is proud to announce the award of nearly $16,000 in funding to its 2019 Small-Grant Cohort. The winning grants fund critical researcher training, equipment, and travel. 

CPA and The University of Queensald supported LEAP-CP Symposium: Early detection and early intervention for children at risk of CP in low-middle income countries. This 8-day education program took place in Kolkata, India.