Wow, December was one of the most eventful months of my life! One of the craziest, busiest, scariest, most exciting and hopeful, friendliest (because of all my friends who have supported me in my journey!) months of my life!
My surgery date for the implant of my Spinal Cord Stimulator (SCS) was changed a total of FOUR times. Each time brought a wave of emotion and a wave of additional work to be done. The first hospital decided not to take me, perhaps because I am on Medicare and Medicaid. The next was only for outpatient surgery and would have required medical transport following my surgery so that I could be admitted to one of the larger hospitals afterwards. The third hospital decided they didn’t want to accept my case because I would have been the first patient to receive the 4-lead stimulator there and they were not prepared to accept the potential risks associated with the surgery (which were no greater than the risks of a 2-lead stimulator implant; ironically, a procedure they did rather often). So it was back to the first hospital – Wake Forest Baptist Hospital in Winston-Salem. Every time the hospital changed, 20 or more hours of phone calls ensued because I had to have a plan in place to address my food allergies, medication reactions (which are both physical- and mental health related), and other health conditions which were going to be impacted by the surgery and pain management afterwards.
Emotionally, I felt like I was riding a roller coaster because I had been given a date initially, and after a long wait and lots of hurdles to get to the point where the surgery was approved, I clung hard to November 11th as my “Blastoff!” Nov 11th became Nov 27th which became Dec 12th, followed by December 14th. Each change was nerve-wracking, but I’m happy to say that I responded in a more godly way as I had to keep letting go.
Looking back, in some ways I am glad the surgery didn’t happen in November. It gave me more time to prepare and get important medical tests and appointments out of the way, including compiling letters from my specialists and writing up several documents regarding gluten cross-contamination protocol. By the time my surgery date arrived, I couldn’t have been more prepared!
My friends, Rachel Pannell and Amy Hatley in particular, made this surgery possible. These guardian angels advocated for me when I couldn’t do so myself. I felt so confident in their ability to care for me — that was one thing I simply didn’t worry about. My family chose not to show up for my surgery, but having Rachel and Amy there brought me a lot of comfort. They ARE my family. My church has supported me through this entire journey!
Rachel and Amy stayed at the SECU House when they were not in the hospital with me. They brought me EVERY MEAL because I had to bring all of my food to the hospital with me to avoid cross-contamination. The amount of work my diet required is hard for most to imagine — I had several single-spaced pages of instructions for Rachel and Amy to follow to keep my food safe from gluten and tree nuts. The management at the SECU House provided a small refrigerator in my room AND allowed me to bring my own microwave to make things easier for Rachel and Amy. I was so grateful to God that He provided the SECU House, a beautiful hotel-like lodging house where families and caregivers of patients who were in the hospital could stay. The staff members there were kind and wanted to help. It was nicer than a hotel and had an atmosphere that allowed those staying there to be as social with other guests as they wanted to be, or find as much quiet privacy as they desired. I didn’t have to worry about my friends being comfortable while caring for me. That took a huge weight off my shoulders. The SECU House is funded by donations and it was financially affordable, a HUGE BLESSING!
Each day leading up to the surgery had become more and more hectic with the last-minute details. The day before my surgery, I’d finished the last few items on my “to-do list”. I sat back and said, “Wow. I can’t believe I’ve completed everything on this list! I know it’s only been by God’s hand that this even got done…ALL OF IT!” I needed that sigh of relief. It didn’t last long….
The night before my surgery was tough. Gratefully, I’d slept fairly well the night prior. We arrived very late at the SECU House and I’d been in horrible pain all day because I’d been pushing my body to its limit to get things like packing done. When we did arrive, some things weren’t prepared which we’d been told would be ready — the fridge wasn’t there, in particular. So several hours of setting up “food safe zones” and getting the food reorganized for the week followed. I don’t remember all the other things Rachel and I tended to that night, but it wasn’t before 2am that we went to bed.
Before bed, I asked Rachel, “Do you snore?” Her answer was “I don’t know, I’ve never slept with myself.” Being a VERY LIGHT sleeper, I prayed I wouldn’t need my ear plugs. Unfortunately, Rachel snores like…I don’t know…something that snores A LOT and LOUDLY! I was so tempted to wake her up at about 6am to ask her to take a walk around the House so I could get a little sleep! But I figured it was fairly pointless to wake her because I also had to clean out my GI tract as a prep for the surgery which meant I was shuffling to and from the bathroom all night and probably wouldn’t have slept despite desperate attempts. Ear plugs were not helpful. I decided instead to try to be grateful to have my friend with me, grateful for her love…even though she snored ridiculously. She was totally exhausted, perhaps moreso than I. I figured I was still running on adrenaline and would crash and burn after the surgery; Rachel only ran on espresso.
I sat down in my wheelchair for a few minutes to relax, if possible, between tasks. Then I started to cry. A good cry; a much-needed cry. Relief came over me as I realized that within 12 hours my life would be drastically changed. I allowed myself to imagine how the stimulator might help me FOR THE BETTER rather than problem-solving how we were going to survive all the unknowns and foreseeable risks. I imagined my friends being able to touch my legs, without me being afraid…I imagined going to the store and not cringing from the pain of the air blowers in the doorway or the rumble of the wire grates on the floor in the entrance to Walmart which vibrate when carts ride over them adjacent to me as I’m walking…I imagined enjoying the sunshine on my legs with less pain…I imagined walking with less pain…I IMAGINED LESS PAIN. I asked Rachel through tears, as I ate a little chicken salad, “Why has it been so hard for me to think about all the good things the stimulator could do for me? I’ve taken so much time hoping for the best but planning for the worst…and squashing down my hope in the process.” It was true.
As this SCS has represented the Final Frontier of what Western medicine is capable of doing for my condition, opening up my mind to the possibility of it REALLY WORKING WELL only to find out after it was implanted that it failed to bring relief seemed like the most devastating possibility I could ever set myself up to trip over. I found it, perhaps ironically, easier to say “it may not work” or “it will probably work a little” and find myself pleasantly surprised on the other side of this battlefront. A non-working SCS, at this point in my life, represents one of my greatest fears. I realize that might sound silly to folks who don’t have CRPS or major chronic pain…but it’s a very common experience among those for whom the SCS is the last shot. Better to be pleasantly surprised as opposed to dismally disappointed…right? I was emotionally exhausted and overwhelmed. My body agreed with my emotional state. I could only think of the possible benefits for a few minutes before I had to return to my then-present reality – I needed sleep!
…not that I got any. The early morning hours stretched into what felt like days as I laid awake in bed, in a dark snoring room, between pit stops. I was too tired to think in words, only pictures, which was probably a blessing in disguise. I was nervous, but I wasn’t wringing my hands. I just had this sense that, despite all I’d been through and all the hurdles past me, I was making the right choice to go forward with the surgery. I had prayed many times during the past year that God would give me peace if He wanted me to proceed with the implant, and I thanked Him for doing just that. Even being aware of the risks, my doubts were few.
I made a quick video about my thoughts a few minutes before Rachel and I left for the hospital. It somehow brought closure and made me feel more connected with friends who were keeping up and praying for me.
We arrived at the hospital just in time and began the painstaking process of further explaining my specific needs related to diet (met with a hospital dietitian), GI issues, medication reactions, plans for dealing with all of the above, and answering the same questions asked in three different ways about five times each. Haha! The Super – organized medical ID card and all the info I’d brought with me for each specialist came in handy…as did Rachel’s memory. I got answers to a few questions and was glad that my doctor and I specified the surgery site for my implant, as he thought I wanted it somewhere else and I would have been very upset to find it in an unexpected area when I woke up!! Several unsuccessful IV sticks later, we were about ready to roll.
“Here I am! I’m here! I’ve got an IV! I’m about to get my SCS!” For all the months I’d been preparing and waiting – here we were, and I felt like an excited bride who was about ready to run, skip, and jump down the aisle all the while asking herself, “and just how did I get here?”. Of course, getting married doesn’t usually require having oneself cut open and stitched back together…but…just add that caveat in there and you’ll get the point. The anesthesia dude told me we were ready to go and I hugged Rachel. Oh my was I close to crying! But she’s not the crying type so I did my best to hold it in and appear strong as I said, “Rachel, after all this hard work, we’re finally here. Thanks for being there for me. I love you.”
I looked up at those huge OR lights as they got the metal utensils prepped and verified my identity (as if I had a bald twin hiding in the OR to take my place…but I appreciated the gesture). As I always do, I told the team that I like hearing voices when I have to be awake for surgery; keep talking to me. My drip was connected and I felt the medication hit very quickly. “Wow, this is good stuff,” I said, as my vision became blurry. “Don’t fight it, just relax” the woman said. “Don’t worry, I won’t fight that,” I said, thinking to myself, “I finally get to sleep!…kinda. At least I know I won’t snore.”
I felt groggy. “What’s happening?” I asked. “You’re getting your stimulator. We need you to wake up for a few minutes so we can ask you some questions. It’s okay. No…you can’t move right now, honey. Try to relax and focus.” I told them I needed to find a slightly better position to be able to talk; my neck was killing me. I was repositioned a little and told that my rep, Mrs. K, was going to turn my SCS on. “Tell us when you start to feel it.” The questions went on for a while as they got my legs, back, and belly areas stimulated and moved the leads around. I was having trouble coping with the pain. I believe because of the anesthesia, my normally “tough girl” attitude wasn’t in full swinging and kicking mode. Haha. The doctor began feeding the leads up my spine and into my neck to stimulate my arms, hitting every nerve along the way. “Oh! Ow! Go slow!! *Groooooan*…Can I get more pain meds?” LOL. Yeah, not my usual response to pain. I guess I’ll feel better if we blame it on the impact of anesthesia over wimpiness, okay?
I was happy that we were able to get stimulation into both my back and legs and all the way down to my toes. I tried to communicate clearly that the feet and toes were my primary goal and that if we had to sacrifice coverage in my abdomen to be sure my leads wouldn’t move away from my nerves that go to my legs, I’d be okay with that. I was a little concerned about my right arm, however. I kept telling them that I was getting a lot of stim in my right thumb but not in the rest of my arm. We did eventually get coverage in my arm, but I wasn’t sure why it was so hard to get the whole arm. My left arm gave us less trouble.
It was time to knock me out again, and for that I was quite grateful. I suppose at this point in my life I’ve lived through enough surgeries, medical tests and procedures WITHOUT anesthesia that I feel like Not Knowing what’s going on while they’re working on me is a bonus.
The recovery room wasn’t my cup of tea. I was nice to the nurses but I kept getting someone new every few minutes it seemed like, so questions weren’t getting answered and there were no familiar faces. I prayed. Nurses were prepared to give oral meds, and I was thankfully aware enough to tell them that no oral meds were allowed at this point due to gluten in many pills and my GI disorders. There was a fellow attending my case who popped in and told me I’d be staying for 5 days, then 3 days, then 2 days, telling me this is normally an outpatient procedure. I was surprised and said, “Dr. North had written his orders for 7 days for a reason. I hope not to stay that long, but I think we need to be prepared. I have severe reactions to medications including vivid hallucinations that can require significant medical intervention to treat.” I felt like he wasn’t listening…and I didn’t feel confident that he really knew my medical history. I didn’t feel confident that he believed me, and that always annoys me. I took a deep breath and prayed that God would continue to watch over me. Nurses and the fellow kept repeating themselves, saying, “You don’t want to stay in the hospital because of the risks of infection and the patients around here who are very sick. You’re safer at home.” I said, “I know that is true and I fully agree. But I’m not safer at home if I am hallucinating and my friends are trying to keep themselves and me safe and I’m reacting to medications. I do NOT want to stay here longer than necessary, but neither do I want to be kicked out on my tail.” The final decision was made to keep me on a ward that was intended for patients staying up to 36 hours I believe.
Once I arrived in “my” room, I realized the local anesthetic injected where I had the surgery was still working and I should try to sleep before it wore off, as the pain was coming. Before falling asleep I remember feeling grateful and happy – I knew the SCS was now inside of me and it would take some real effort for anyone to take it back now. Medicare and Medicaid wouldn’t want it back. “It is finally mine!”
I had the surgery on a Saturday, and the next few days became a blur to me. Getting from the bed to the commode chair next to the bed was a major feat that caused major pain and muscle spasms every time. Sometimes I could hardly wait for the next dose of medication as I watched the clock. I knew that the implant site was dangerously close to an area of my body where I already have CRPS, and though the pain felt more acute in nature, I didn’t know when I would be sure whether or not I’d develop CRPS there too. The narcotics helped with my surgery pain but not with my CRPS pain, so I hoped for the best because I was able to differentiate the two. My stimulator wasn’t on yet to help me cope with pain.
My GI system was doing pretty well with the IV medications and I’d fully enacted my magnesium citrate plan to keep things moving. The few hallucinations I had were relatively mild and only became problematic when I began the oral meds to go home with. Anything that messes up my gut (the fillers in oral meds mess up my gut) messes up my brain too, so my brain was like liver pate for several weeks after I came home. Once the oral meds began, only a few hours later my gut went south. The antibiotics weren’t making it any easier.
We did hit a few snags while still in the hospital. I began to have some strange reactions to medication. I began tearing into my skin because I itched everywhere; it was like the worst poison ivy I’ve ever had times 10. They started giving me benadryl through my IV as a chaser. Then, several doses later, I developed hive-like welts traveling down my left arm within one minute of the nurse pushing the benadryl after the dilodid. “Oh, that wasn’t there before,” she said. Unfortunately, the itching and weird hives thing wasn’t enough to convince them to give me something other than dilaudid and benadryl. It took more.
I have sleep apnea, but when I’m really sick because of the dysautonomia, I also have what I refer to as “daytime sleep apnea”. Meaning…my body forgets that it needs to breathe. And it actually is as weird as it sounds. I’m not trying to hold my breath…I just exhale…and forget to inhale again. Even if I try to make breathing a conscious effort, I eventually forget. Then I Gasp.For.Breath! Rachel has seen this happen before when I’ve been very very ill. But this time it was a medication reaction that was causing me to stop breathing. Amy said that the medication was “depressing [my] respiratory center in my brain, the part of the brain that tells your body you need oxygen”. No clue what my o2 sats were…wish someone had thought to actually hook up the monitor. Duh.
I was concerned that if this continued, I could potentially end up on a respirator, but I was too exhausted to deal with it. Rachel came to the rescue and advocated for me, telling the doctors that this medication was doing bad things. Rachel told me how the doctor couldn’t wake me up for more than 10 minutes and the doctor began shaking me. Rachel said it freaked her out because she knew how lightly I normally slept. I just remember coming to with a new woman in my face, very close to my face, who looked worried. I didn’t know who she was nor how she got there and I felt confused. According to Rachel, though the doc had talked to her for over 10 minutes before she began the 10 minutes of trying to wake me, the doc needed to hear what was going on from me in my own words as well. Rachel said I kept going in and out while trying to talk and telling the doctor, “Just ask Rachel!”. I remember feeling annoyed that she kept pestering me at that point. LOL.
I was glad that I did not get glutened while in the hospital. Even in my groggy state, I managed to frequently ask people to take precautions to protect me from gluten. If I’d been more aware, I would have put a few signs above the bed…but my problem-solving skills were fried at that point.
I did have one problem I wanted to be solved before they released me, however, and about this I was not going to “go quietly”. I wanted my SCS TURNED ON! After all, I had a 2.5 hour ride home to endure and the meds weren’t able to cover my CRPS pain. A different rep (Mr. B) came to the hospital Tuesday afternoon and got my SCS fired up. We didn’t have a lot of time to do a thorough programming, but something was better than nothing and I was grateful.
My meds were switched and I started oral meds after the previous commotion. I went home late Tuesday, trying to survive the bumps in the road as I laid in a very awkward position in the passenger’s seat, drugged to my eyeballs. The SCS helped me survive riding in the car with CRPS, where all the vibrations hurt.
That’s about all I remember, to be honest. I know I forgot a lot of stuff here and there, but I’m not sure it would be helpful to remember anyways. Forgetting pain isn’t a bad thing! 😀
All in all, I was just grateful to finally have my lovely SCS and to be moving on to the next phase of healing from surgery and hopefully having less pain. I smile to myself every time I remember that it would be difficult for them to take my SCS away because it’s now a part of my body. Yay!