Nerve Freezing

Nerve Freezing…also known as Cryoneurotomy

Going to appointments has become second nature to me. I’m used to all the questions, I go in prepared with my own questions and William handles it all pretty well for the most part.

Recently, we had what I thought was a consultation appointment. In my experience to date, a consultation was the first step in exploring new options for therapeutic treatments and the efficacy and outcomes for William. I ask all my questions about the treatment and the specialist then answers those questions and shares all important information so that I can make a decision on whether said therapy is in William’s best interests.

This particular appointment didn’t follow the normal trajectory of the consultation appointment I was expecting.

Leading up to the appointment everything was the same: the pediatrician discussed the therapeutic treatment option with me; it was decided that the consultation was a good idea; referral to the specialist was sent; and the appointment was booked for about 2 months out. I researched the procedure, talked to one of our other specialists and felt prepared.

We arrived in plenty of time for our 9:45am appointment. I should mention that we live about 1hr and 20 minutes away which makes for a rather rushed morning to make an early morning appointment. We rolled our way in feeling optimistic about meeting this new doctor. We signed in at the front desk, I had all the paperwork completed and we were sent to wait. It was a busy area with lots of rehab going on around us so William was entertained for over half an hour while we waited.

I was starting to feel a little frustrated at the lack of consideration for what it takes to have a little boy like mine at an appointment at that time, never mind what it takes for him to be comfortable waiting and then stay content for the duration of the appointment.

We were ushered back into a very small room where three humans were ready to meet with us. My mind quickly shifted back to what we were there for, introductions happened and I was shocked that the doctor we had come to see wasn’t even in the room – my frustration was on high at this point. I didn’t say anything as the attention quickly moved to William and everyone had hands on him to feel what his body was like after 10 years of dealing with spasticity and tone. They asked all their questions about medications, body position tendencies, current therapies and daily routines. Recommendations were made (all of which have been made in the past and all decided against because they were not in William’s best interests).

I went along with all of the discussion while being friendly and open-minded as sometimes meeting new doctors brings opportunities I wasn’t previously aware of.

 

Toward what I thought was the end of the appointment, the doctor recommended BOTOX which is NOT why we were there.

We have done BOTOX! So I listened to his recommendations and then politely asked about the procedure we were actually there to consider – Cryoneurotomy. He got a shocked look on his face and said he would go talk to the actual doctor we had made the trip to see. About 5 minutes later the right doctor walked through the door. He was like a gust of wind crashing through the very tiny room. He manhandled William the same way the other doctors already had and then had a few comments, gave me a few high-level points about the treatment and then proceeded to tell me that we were going to numb a few of William’s muscles to give us an idea of the efficacy of the actual procedure.

I agreed to go ahead with the numbing. Admittedly now, with not enough information!

 

William was beside himself! 

It was a long soft needle that was pushed through his skin and guided by ultrasound into the correct place. The needle was at least 2 inches long. The first spot got done but it felt like we had been holding William down forever. There was blood on his shirt and it was a fight to keep this poor kid still through something I wouldn’t even want done. Then it was suggested to do 2 more spots.

I’m writing this blog several months after this procedure and I can still feel my emotions from that day – yes or no Keely? Should I allow another two pokes? Do I put William through more? My stomach ached and I was sweating – both from holding my kiddo down and from my emotions running high.

I agreed to numbing 2 more spots. I felt like I could do a better job holding William still now that I had seen what he was in for, but he fought every step of the way. After three pokes and adjustments it was over. It felt like an eternity but in reality it was fairly quick. During the last one, I started to feel nauseous – like all my adrenaline was depleted. I instantly started questioning myself on whether this had been the right thing to do. I felt like we were torturing this poor little boy and I hadn’t given him any warning because I hadn’t been given the guidance on what to expect.

The guilt, the love, the worry, the disappointment in myself, the shock, the shame – my heart just hurt for my little man as we were leaving that appointment.

William’s caregiver, Tom was with us that day and was in the trenches with me. I’m very grateful I wasn’t alone.

All I wanted to do was curl up with my boy and tell him I’d never let anything hurt him ever again.

 

Parenting a child with special needs isn’t just the daily grind, it’s also the constant need to interpret, advocate, place trust in other people and then balance the risks and rewards based on my knowledge of William – challenge accepted but I may not always get it just right.

And I do have to remind myself regularly that I’m always trying my best. Not only that, the doctor’s and specialists do their best too. I have no criticism of how they handled William (beyond the delays and doctor mix up). They were all as gentle and quick as they could be.

Looking back on this day, it didn’t go as I had planned but the results of the numbing were undeniable. So, we have committed to the procedure.

The months of being a squeaky wheel to follow in a later blog.