The Journey to Healing
Behind that smile? FEAR.
Three weeks and three days ago, I underwent nerve decompression surgery for occipital neuralgia. If you missed my post about my journey with chronic pain and illness, check it out
The days leading up to the surgery went by in a blur. I was terrified, crying at the drop of a hat, and having the craziest surgery dreams. The night before the surgery, I dreamed that the surgeon woke me to tell me they opened me up and found nothing. They just sewed me back together! I wasn't sure to be scared of what he would find or scared they would find nothing, leaving me with no other options.
The morning of surgery came early. We left home at 4:00 am for a 5:00 am check-in at the surgical center. Although it was 6:00 am before they took me back to get prepped for surgery. The hour of sitting in the surgical waiting room passed with growing anxiety and a hundred trips to the restroom. You know, to hyperventilate and splash my face with water! These two didn't seem to mind the wait at all. I took it as a good sign that they weren't too worried about what was happening to me to sleep.
Once they took me back, surgery prep went quickly. IV, EKG, surgical stockings, and a pep talk from Dr. Perry. He saw the terror on my face as soon as he walked in, and as he started talking, the tears snuck out of the corners of my eyes. He gave me the locker room pep talk reminding me that this wasn't an elective surgery. This was a surgery that would potentially change my life. He said, "Think about your current quality of life. Everything you miss out on, the way it's deteriorating even more, and think about your family. You are doing this for them. I'm not going to promise it isn't going to get worse before it gets better but you are making the right choice. Now let's do this. Ok?" I thought to myself, "Put your big girl pants on Luann and your brave face and let's change this life of yours."
Justin said, "act excited."
I talked to the anesthesiologist about my propensity for nausea and vomiting. I got a patch behind my ear, extra meds in my IV, extra liters of fluid, and all precautions. She came to my side and gave me Pepcid through my IV, and then she said, "I'm going to give you this little margarita cocktail and you will be very relaxed while we roll you to surgery." Boom. Next thing I know, I'm waking up. My first memory is throwing up and seeing a flurry of activity. Yep. It happened, of course. Fortunately, surgery was done, and they were removing the intubation tube. Boom. Back out.
I had a hard time in recovery. I was really sick. I could hear the voices, but I couldn't speak or move for a while. But what I did find out was this.
The surgery could not have gone better. Dr. Perry decompressed 16 total nerves. Eight on each side. The right side (the side that gives me the most pain) was a tangled mess. The greater occipital nerve branches should run up and down. On the right side of my head, it didn't. It ran vertically until about the lower third of my head and then took a hard right. It was so wrapped in scar tissue and muscle that it was horizontal.
They gave me a shot of Phenergan before I left and my own personal vomit bag for the ride home. I'm so grateful they did because it knocked me out, and I was able to sleep through what was a horrible car ride home through five o'clock Houston traffic.. and Justin's driving!
Not going to lie for those of you who are considering the surgery. The next 48 hours were brutal. In fairness, Dr. Perry keeps telling me that most of my issues were reactions to anesthesia and not the surgery. I've met many people who went out to breakfast the next morning after the surgery. But not me. Of course not me. I couldn't keep anything down, including pain meds. My pain was off the charts. Throwing up after getting three large incisions in the back of your head and your throat still screaming from intubation is not for the faint of heart.
Ugh. On a more hilarious note, Dr. Perry told Justin to turn the air conditioning down to 68 for the entire time that I was experiencing anesthesia side effects. Not kidding you; our house must have been freezing. I was oblivious to it. Even at 68, I was sweating and nauseous. All the windows were fogged, and every time someone came in to check on me, they were wrapped in blankets with runny noses. They kept going outside to thaw out. Justin said he started getting worried and realized there was something seriously wrong when I kept saying I was hot. Ha!
My dad took the boys out on the day of the surgery and kept them fully occupied, entertained, and loved.
The boys were afraid at first. I was sent home with both a pump and a drain that had two large hoses coming out of the back of my head. The incisions on my bare head looked really intense. They were nervous. They came in occasionally and talked to me from the door. Eli got brave enough to sneak over for a hug but intentionally stayed to the front of my body.
By Monday (surgery was on Friday), things were starting to look up. I was keeping down antibiotics and pain meds. The cooling mask and machine that you can rent from the surgeon's office was a life-saver. It got me through the worst of the first 48 hours.
I had my first post-surgical appointments on Wednesday. First, a stop at Dr. Perry's office in the morning.
See that drain hanging out of my shirt. The entire family was happy to say goodbye to that nasty thing! We removed the pain (a local anesthetic and antibiotic) pump the night before at home. The cord in my head was 12 inches long, and Justin had to pull it out. Whew. Dr. Perry removed my drain at this visit. FREEDOM.
I got a great report regarding the level of pain and how things were coming along. My instructions were to start my head rotation exercises, scalp therapy (massage of the head including incisions and hair brushing), and supplements on Friday.
I have to heat my neck as many times a day as possible and brush my hair (including incisions) with Wetbrush 3 x's a day. My restrictions were to continue to sleep elevated for at least two weeks (helps with swelling), no bending over, and no lifting over 10 lbs indefinitely until cleared at a future appointment. Baby shampoo for six weeks. No heat on my hair at all. No dryer, etc. So I had to get creative!
At Dr. Blake’s appointment, she reinforced restrictions and set some timelines for expectations. Expect to be on a roller coaster for maybe up to a year. Good days and bad days. Twelve weeks is a good milestone indicator of how things are going. Anticipate that headaches could return at some level over the next few months as the nerves begin to regenerate and send out signals. Expect some paraesthesia. Paraesthesia is an abnormal sensation such as tingling, tickling, pricking, numbness, or burning from nerves. It can feel like ants marching, electric zaps, stabbing, etc. A whole range of fun to look forward to.
She prescribed medication for those if they got too much to manage in the coming weeks. I am learning what it means to "measure recovery by weeks not by days."
Week One was HARD. I had blurry vision, I couldn't read or type words. I had huge red blisters on my face from the anesthesia. I had a lot of surgical pain and just could not walk to even the mailbox without being wiped out. It scared me!
Week Two brought hope. It got much better. It was marked by several really good days, including an outing for some back-to-school shopping with my mom and treating my mom to a spa treatment before she left us. It was also marked by the onset of paraesthesia. In week two, it felt like my scalp was too small for my head. I woke up in in the night one night to the feeling of knives being stuck in the top of my head. Other times it felt like bugs were crawling all over. I decided to start the nerve meds the night after it felt like I was stuck with an electric cattle prod over and over. Now if that's not a Southern analogy for you, I don't know what is!
I experienced another surgery side effect - hair loss. Apparently, as the nerves begin to feel and make sensations, they "shock" the hair follicles and release hair earlier in the growth cycle than they are supposed to. It's temporary. I was lamenting to Dr. Perry about it, and he said, "You will look great bald and pain-free!" Geez, thanks. But he is right. I would rather be bald than live in the pain I was in!
While I am disappointed about this side effect, I am pleased with the progress I've made in growing my hair back. It gives me hope that whatever I lose, it will grow back. It's now a lot more pleasing to see the back of my head! My mom couldn't get over how dark it is. I can't get over how grey it is. For real.
Week 3 marked my first real headache since surgery. A nasty migraine out of the blue at the end of week three. As I fought my discouragement, I got my headache journal out to enter the information, and God just led me to just look through the older ones. One migraine in 3 weeks. It has been YEARS since I've gone three weeks without a major headache. YEARS since I only took a triptan once in 3 weeks. And it worked! I took the triptan, slept, iced, and took it really easy for the next 24 hours. It cleared up and went away! THAT NEVER HAPPENS.
At my 3-week follow-up appointments, they reminded me that I can sink back into chronic daily headache pain in two main ways. 1. By overdoing it. Using the neck and trapezius muscles too much. That's why no sweeping, vacuuming, mopping, etc. 2. By not managing stress. I can see in week three that I failed at both. I did too much, and I was stressed. It was the first week without my mom, and Justin and I really struggled to manage his job and the boys. It's a learning process for us too.
The goal is week by week to have more good days than bad.
I continue to rely on others to do so many things that I can't do for myself. I have the most incredible community of friends.
Gift baskets with favorite things, meals, and carpooling for the kiddos. You name it. People have shown up to do it. Just sent a text and said we are coming and bringing food. I was on a hilarious group thread where I asked for someone to come help me with laundry and picking up a few things I couldn't do, and not only did someone race right over, they were competing for who could get here fastest! Y'all. I weep when I think about the way God has loved us through other people in the last three weeks. One friend has fed us, picked up the boys, dropped off the boys, and been available whenever we need something. Another spent the entire day driving me to and from doctor's appointments and even took me shopping.
My boys have been so incredibly helpful. They are pretty much my arms to reach anything below waist level. They are slaying the bottom of the dishwasher and the dryer with their new skills.
And all the love you could imagine!
We watch countless hours of movies from the snuggle position in my new recliner
Week 4 kicked off with a maiden voyage of driving myself to an errand. I brought my big helper to pick up a few things. Literally, pick up the items. I shouldn't even push a shopping cart right now. He handled the cat food and all the bottom shelf items like a champ. He loaded the cart, put it all on the conveyor, and loaded the bags into the car. What am I going to do when they go back to school?
Week 4 has been challenging so far. I started steroids this week as part of the healing protocol, and the nerve action is intense. I had one of the highest nerve pain levels yesterday since surgery. It's hard to wrap my mind around the length of time and the patience I need to heal and take care of myself.
I am off three more weeks from work, and then I return part-time for two weeks before trying to slide back into normal rhythms the best I can. The volatile nature of this recovery is challenging. It's hard to predict what the day will bring and what I am able to do. Not only is my pain and physical recovery on a rollercoaster, my emotions are on the ride as well. I bet my first phrase in life was, "I'll do it myself." And I can't do it myself. It's frustrating at times and a new dynamic in our home. We are doing the best we can, but there have been bumps for sure.
I may have broken down a few times and just had a good cry and pity party for myself. I spent the last four years pushing through pain, and it's time for me to learn to listen to my body and what it needs and when it needs rest. It's a steep learning curve!
One of my best girls sent me a series of video messages during the week when I couldn't read or really even type out text messages reading me scripture and devotionals. I even got a special surprise video from her daughter reading a devotional from her book to me, reminding me of God's love. In the first hard days, she read to me from Psalm 62.
Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour your hearts to him for God is our refuge. Psalm 62:5-7
I'm learning to trust in the waiting that He is doing healing work in my body day by day. These words are a reminder to me to find rest in this season for my body and my soul and never to give up hope. We pour out our hearts to God, and He hears us and strengthens us.
My prayer journal now has an entire section titled "Surgery." My time with the Lord has been cathartic, healing, and life-giving for my soul. I spend time when I can writing the ways I see God in all of this, through His word, through His voice, and through His people. And I write big bold prayers believing Him for them.
Thank you for every single prayer lifted on my behalf. Every call, every text, every devotional share, and email sent my way. I am eternally grateful, and I believe that they are being answered.
Would you join me in praying for the following?
My most significant prayers for the next three weeks are for the continued healing of the incisions and reduced nerve pain. Pray for more good days than bad each week. I am praying boldly and asking for the pain that once existed in the back of my head to NEVER return. Continue to pray for rest as my body heals and patience with the restrictions and changes it has brought to our lives. Keep all three of my precious boys in your prayers as they take care of me.
Thank you for making this girl feel loved and cared for!
With gratitude, Luann