It’s interesting really, growing up with Sacral Agenesis, a congenital spinal birth defect and having to have more than forty surgeries in my forty years. You would think I’d be a pro, right? And, I suppose in some ways I am. I manage my emotions related to undergoing major surgery quite well. For example, I just recently had yet another spinal fusion.

As I mentioned in my prior post, my surgeon attempted to do a lateral approach (opening me through my flank) to do the procedure, but had to abort the surgery because all of my major nerves were “in the way”, preventing him from completing the operation safely. Just a little over a week later, my surgeon and a vascular surgeon went in together to perform an anterior approach (opening me through my abdomen) spinal fusion because my L3 was fractured across the entire vertebrae.

I did a pretty good job managing my disappointment that I had an entire “procedure” without the great outcome I was hoping for and having to do it all over again just over a week later through a different incisional opening. Sure it was upsetting, but I have learned that life doesn’t always work out the way I want it to.

The pain was difficult to manage in the hospital after my second procedure because I was also still in pain and limited from the first operation. But I kept pushing through with my “can do” attitude, waiting to get to the other side. I always talk about that. It’s so much better to just get through the surgery to recovery. It truly is. Notice I did not say it’s easy, because we all know that would be a gigantic lie. Emotionally, it’s better because it’s moving forward. That’s what I mean.

 

Recovery

So, here I am “on the other side” and into recovery. It’s not going at all well. I’ve had a couple set-backs. It’s only been two months, which is not an endless amount of time, but I should not be in this much pain and spasm at this point. They cut through so many different muscles, my flank, and my abdomen and then did the fusion on my spine. They kind of got me on three sides I suppose.

The spasm is debilitating to the point where I literally cannot move. But I am still trying to do laundry, cook when I can, shower, and tidy up the house. I also try to rest a little because I know I should. I keep moving because I know my muscles will lock up even more if I don’t. Right now, it is hard to take a normal breath without a major spasm throughout my trunk. When this happens, it locks up my body and causes me to hold my breath because it’s so painful.

After forty surgeries, I should be used to this, right? But I never had to have two operations in one week through two different sites, although I have been wheeled back for emergency surgery through the same incision.

Adding to the challenge is that I’m not able to walk much because I am only recently recovering from several stress fractures in my feet. And, if that wasn’t enough, yes, I accidentally slipped in the shower a couple weeks ago and fractured the 4th metatarsal on my right foot. Don’t ask! So, right now, I am completely off walking. However, the NOT walking means my muscles aren’t getting stretched as they usually do in the routine motion of moving my legs—I really want to move my legs!

I know it is normal for me to be where I am in my recovery, but I can’t let go of wanting to be further along. I’m used to the pain decreasing faster. But this is muscular and very different from the pain after my other operations. Sure, I feel some bone pain from the little screws and the plate, but it’s the muscle spasms that keep me from moving at all. It takes everything I have to move through it and I hold my breath and push.

 

Aqua therapy

Yesterday was my first day of aqua therapy! Yes, progress!! Oh, it was like heaven being lowered into the water and moving my legs. The physical therapist takes it really easy on you your first session because in the water you cannot tell if it’s hurting. My favorite part of yesterday besides moving my legs was in the final 5 mins. She set me up so I was suspended at zero gravity and I could just hang there and either move my legs in a scissor motion, bicycle motion, or opening and closing them. The entire 5 mins I had NO pain anywhere in my whole body. First, I wanted to cry; I was so relieved and happy. Then I wanted to sleep because it would actually be possible.

I decided to close my eyes, move my legs, and think of my days when I used to swim. I love the water and swam long before I walked. I was competitive most of my younger years as well. There is a part of me that felt a little “pathetic” that this was all I could do, but I quickly got over that ego moment and just hung there in the water with NO pain. It was absolute heaven. I feel like I’m home when I’m in the water. I couldn’t have asked for a better 5 mins.

The physical therapist told me that a small increase in pain for a couple hours is normal and fine, but beware and make note if the pain increased significantly. Of course, there are no instructions on how to manage that increase, and yes, that is what happened. We did too much, but we had to start somewhere so we know what not to do next time.

 

Trying to stay optimistic

I’m trying to remain optimistic because I know in my heart, my medical team will eventually get me more comfortable. Of course, I am hoping that happens sooner rather than later. I’d like to get back to work, but I won’t do that until I’m really ready to commit and be an asset to the team. The way things are now, it would not be fair to my team to start and then have to pull out after a day. I have too much respect for my company and team to do that to them. They want me at 100% and I won’t give them anything less than that.

So, this is a strange situation for an optimist. There is no real plan on how to get better, I just have to trust that it is going to happen. Since I usually sign off my posts with a fun song, this time I will close with a song that is not my usual style at all—it’s Kelly Clarkson “What Doesn’t Kill You.” I’m not fond of cliches, but I find this one makes me feel better—like I still have the fight in me as I listen to her sing: “What doesn’t kill you makes you stronger, stand a little taller.”


Featured Photo Credit: UCD School of Medicine

12 COMMENTS

  1. Hi, I have Sacral Agensis, is it possible for us to talk? I’ve been struggling to find a doctor ever since I turned 18 who will help with the problems I’m having.

    • Hi Greg it’s nice to meet you! I would love to talk. Would you like to email because I do have information for you, shocking right? There is a FB group for SA as well I look forward to talking and sharing stories! I’m glad you found this blog. My email is Julie.hmker@gmail.com. Feel free to email me. Finding doctors is a challenge and in my adult life I’ve been tasked with that so perhaps I can help! I look forward to talking soon!
      Best,
      Julie

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