In the dark, snowy, early hours of Friday, January 25, 2013, Danny and I made the 45 minute drive downtown to Good Samaritan Hospital. We had to be there at 5:30 am to get all the necessary pre-op things done for my 7:30 am surgery. I felt this incredible sense of peace through the entire time I was getting prepped for surgery. I felt secure in the knowledge that God was with me through this and He would bring me through. I could feel the prayers of my family and friends. It wasn't until I was being wheeled away from Danny that a flood of emotion hit me and tears began to stream down my cheeks. He hugged and kissed me, told me he loved me and that everything would be okay. And as I was wheeled back toward the operating room, I once again felt the peace and comfort from the Lord flood over me!
The first thing I remember after surgery is waking up in the post op recovery room and realizing that I had all kinds of "lines and tubes" coming out of me, but then thinking "Wow, I'm awake. Thank God I woke up!" I was in a lot of pain! I felt as if they had taken a baseball bat and hit me hard in the back of my head. It was excruciating! Worse pain than my three natural childbirths!!
Most of what I remember from the hours right after surgery is how bad I hurt and how nauseated I was. The nurses were amazing and took great care of me. They were able to get my pain medicine switched to another type which was equally effective but did not make me nauseated. In spite of the surgical pain, I could tell that the surgery had already worked in some way because I no longer had that awful headache and pressure which I had prior. I also did not have the tingling in my right hand and foot. This was a wonderful thing for me to realize, because it helped me to tolerate the post surgery pain and know that it was all worth it because the surgery was successful. I remember very little of my hospital stay. Really just bits and pieces of those few days. I was on a ton of pain medicine and other drugs.
Here is my surgery site, the day after my surgery.
I stayed in the hospital until Monday. So, 3 1/2 days total. Once at home, Danny took amazing care of me! I stuck to my schedule of pain meds and muscle relaxers as prescribed and was able to manage the pain quite well. I still have very little memory of the first couple of weeks I was home. I believe that it was from all of the medication I was on, but also from some effects on my cognition and memory from the Chiari and surgery. More on this later….
Before surgery, my doctor had said that I would be off work for at least 3 months. But, it could take me up to a year or maybe more to heal from this surgery. It takes the brain and nerves a very long time to heal and as is common with any brain condition, it can be unique to the individual.
At 4 months after surgery, I still had some discomfort in my neck, which was manageable. I was still struggling with some cognitive problems. I was forgetful and overall had that "foggy" feeling in my thinking. I didn't feel like myself at all because of this. The surgeon felt that my thinking may clear up with going back to work and focusing my brain on that again. I knew that I still remembered how to do my job well and did not feel that my cognition was so poor that I would be unsafe to return to my nursing job. So, I returned to work on a modified schedule, as prescribed by my doctor, of four hour shifts to begin with, just to ease myself back into that environment. By my second shift back to work, I realized going back was way harder on me that I ever thought it would be. While at work. I felt like I was "in a twilight zone", like my brain was on overload in that environment. It felt like I just could not mentally keep up. Plus, I was dealing with a lot of neck pain, so the combination of physical and mental stress was simply more than I could handle. I would come home from those four hour shifts completely exhausted and in a great deal of pain. I would have to go straight to bed for the rest of the day. At some point in my second week after returning to work, I developed severe joint pain, stiffness and swelling, and my body just hurt all over. I was dizzy, fatigued and weak to the point that I could barely get out of bed at times. It was like the stress of returning to work shoved my body over the edge and caused a major setback in my recovery. I wrote in my journal around that time, "I have always been the type to 'Just pull myself up by the bootstraps, and go on', but now I have straps that are barely holding on by a thread. I fear that if I pull on them, they may break off completely and then I will break completely."
My neurosurgeon instructed me to return to my primary care doctor, so I did. He did a bunch of blood work, most of which came back normal. He felt that I just needed more time to heal from the surgery, so he placed me back on medical leave from work. I remained off work for another 3 months, hoping my condition would improve. But, it didn't. I still had all of the joint and body pain, fatigue, weakness, plus my cognitive issues had not resolved. Cognitively, I was no better and at times actually felt it was worse. During this time, Danny and I realized that I was not going to be able to return to work. What energy and abilities I had, I needed to focus them on being a wife and mother. As much as my family needs me and I love taking care of them, giving up my part time nursing job was a hard thing for me to come to grips with. I enjoyed being a nurse. It was a big part of me, a part of my identity. Giving that up was what forced me to accept that I was different. That Chiari and surgery had changed me. Accepting that was the last thing I wanted to do. I felt that if I accepted this, it meant that I had failed in some way. I so badly wanted to be back to normal again, to how I was before the accident. I wanted to be that happy, spunky, "quick-thinking", energetic girl again. I just wanted to be back to my old self. Despite my surgeon telling me that surgery was not a cure, I expected and hoped to wake up and eventually return to normal. When this didn't happen as I hoped, I became depressed. These were some dark times for me!
In the first part of September, I saw a rheumatologist who diagnosed me with Dysautonomia and Fibromyalgia. Dysautonomia is dysfunction of the autonomic nervous system, which is controlled by the brain stem, and has many different symptoms associated with it. He stated that I likely have brain tissue, nerve and/or nervous system damage from the Chiari and possibly from the surgery. The Fibromyalgia is caused by this damage and dysfunction of the nervous system. He stated that these issues could improve with more healing time or they may not. He also felt that my cognitive issues could be related to brain tissue or nerve damage as well. In my research, I have found that a lot of people with Chiari deal with cognitive problems. "Foggy thinking" is also a complaint for many with fibromyalgia.
At this point, I am still dealing with all of the same symptoms as I was a few months ago. I am on a medication which helps to relieve some of the joint pain. I have cut wheat and most gluten out of my diet and have been trying some "natural" treatments with vitamins and herbal supplements. It is still a work in progress. I haven't found the exact regimen that manages my symptoms. I do have some good days where my energy is better than others but I have to pace myself. If I push too hard, I pay dearly the following day with fatigue and increased body pain. I also have random "flares" of body and joint pain, and have noticed that I those much worse with all of this cold weather we are having. I wish I could live in a warm bubble! :) I am also still struggling with cognitive issues. I have short term memory issues at times, for instance I do things like put things in the wrong places and forget why I go into rooms. I have some difficulty focusing and retaining information. Doing things like making a grocery list or weekly meal planning is a struggle at times. I also struggle with getting the right words out. This can get quite funny sometimes! :) I find my mind going "blank", and I can't think clearly when I am in any stressful situation. I have an appointment with my neurologist tomorrow to talk about these issues. He hoped that by a year after surgery, these cognitive issues would improve. Since they have not, I am hopeful that there may be some therapy or something that he could recommend to help me. I have tried lumosity.com, word puzzles, things like that to try to help my brain along. So far, I haven't seen a great deal of improvement.
I recently celebrated my one year "zipperversary", as us Chiarians like to call it. It is hard to believe that it has been one year since my surgery! Despite the issues I still have, I feel that my surgery was successful. It did relieve my severe symptoms. I am not the same as I was before the accident and neck injury caused the Chiari to probably worsen and then become symptomatic. I will never be the same again. And, I have finally accepted that. I can't let myself stay discouraged by how I wanted things to turn out or I will never enjoy the wonderful life I do have. I can take control of the things I can change and accept the things I can not control, like my chronic conditions. I can take care of the "new" me by eating a clean diet and learning to live with and accept my limitations. Plus, I know that the biggest thing I can control is my attitude and outlook on life. I may never understand why God allowed this is my life, but I can choose to find the joy in every day He gives me. I can choose to find joy even on the days when I feel the worst. I am determined to not give up but to choose joy every day! God has richly blessed me by showing me his faithfulness through all of my struggles, and because of my relationship with Him, I can have true joy in my life!
Thank you for taking the time to read my story! I am so grateful for all the support from my friends and family for me starting this blog and sharing my story. For anyone who may read this and is struggling with Chiari or any chronic illness, please feel free to contact me with any questions that you might have or if I can help you in any way!
