Editor's Note: This article first appeared in Issue 9 of Holl & Lane Magazine.
Words and images by Jennifer Dudley
I have three wonderful kids and a military husband. When something hurts, I ignore it. I don’t have time for it. If that doesn’t work, I take some Ibuprofen. If that doesn’t work, I try harder to ignore it, and eventually it just becomes a normal everyday type of pain and I get used to it and move on - power through the pain. But what happens when it doesn’t get better? What happens when the pain and numbness in your left arm starts to spread, and it gets so bad you finally do something about it only to find out things are going to get so much worse before they get better?
This is what happened to me. I had been experiencing numbness and tingling for 9 weeks and, after many doctor visits, finally had an MRI to try and figure out where this was coming from. I got a call from a surgeon friend of mine after I had sent him a copy of my MRI. He said, “No, this is not a slipped disc, or a pinched nerve, Jenni. Your brain is literally falling out of the back of your skull and compressing your spine and slowly paralyzing you. It is called Arnold Chiari Malformation and you will have brain surgery within a couple weeks.”
Pause for momentary freak out.
Okay, say that again. “Jennifer, your cerebellum [the back lower part of your brain] is pushing through the hole in the back of your skull, and with nowhere for it to go it is compressing down onto your spinal cord. Thus making a path for cerebral brain fluid to enter your spinal cord [which is only supposed to have spinal fluid in it] creating a pocket of fluid called a syrinx, which in turn damages the nerve fibers in your arms. And the reason you are getting worse is that you are neurologically declining and the syrinx is growing. You will have to have a surgery called a decompression on your skull and top vertebrae and also a duraplasty on your spine to remove the fluid in the syrinx.” Now, once in again - in English, please! “Jenn, you need to find a specialist, you need surgery, and you need it NOW.”
I could tell you that I took this atomic bomb of information in stride, that I went along with my evening doing baths and bedtime routines with my three beautiful children. But the truth is I fell apart. I could not control my sobs. What was going to happen to me? What was going to happen to my children? Was I going to have brain damage? Was I going to be able to raise my kids? How long would I be recovering? Who was going to do the surgery? Who was going to take care of me? My family… my life?
It just so happened that I was living temporarily in Kansas, from Ohio, at this time while my husband was going through a military school. Thankfully, my mother happened to be in town visiting (thank you, Jesus) because my husband was out of town when I received this news. So at least I was not alone, and maybe having my mom there to help me digest this was even better. She let me lose it, she comforted the kids when they heard me crying, she tucked them in for me, and came and sat on the bed next to me and held me until I got it together. I cried, I cried like I never have before. I got it all out, and then it was time to start my battle and figure this out.
I went straight to the internet. My surgeon friend was researching facilities, options, and neurosurgeons. It turns out there are only about 12 Chiari centers in the United States, but none in or around Kansas. There were two, however, near my home in Ohio. After researching my options we decided on the Chiari Clinic at UPMC Pittsburgh and Dr. Friedlander as my neurosurgeon. He was known to be one of the very best in the country for Chiari decompression and duraplasty surgery. So I set out to get the referrals and all the things I would need going forward. After jumping through some hoops, I had an appointment scheduled in Pittsburgh within five days and I found myself, my mother, and my youngest child on a plane headed home to Ohio. My husband stayed in Kansas with our two school-aged boys and awaited the official diagnosis and plan.
This part of my journey seemed to be the longest. New symptoms seemed to be starting with each new day: headaches, vomiting, dizziness, and at one point even an inability to swallow. I found myself praying at night not for the diagnosis to be wrong but for it to be correct and for the surgeon to say yes I will do the surgery. That’s right, I was praying to have someone cut into my brain and spine. That was the only relief I could see.
Since my husband was not able to go to the consultation, my older brother, Jeff, went along to make sure I didn’t miss anything going forward. It was a very long, stressful day of appointments, doctors, and tests and at the end of the day the diagnosis was confirmed. It was actually worse than originally thought so surgery was scheduled immediately for December 1, 2015. My 36th birthday.
I was lucky though, from the official diagnosis to the surgery date was only five days, so it did not leave a lot of time for wigging myself out. We booked flights for my husband, Matt, and the boys, and started to prepare. It just so happened that this all fell right before Christmas and as a mother of three of course all of my focus was on making sure all of the kids’ presents were bought and wrapped beautifully since no one could guarantee what kind of shape I would be in post-surgery. And come hell or high water, I was going to make sure this was still a magical Christmas for my family.
As the days passed my condition worsened: both of my arms felt like they were asleep for most of the day, loud noises were unbearable from the constant headache, and keeping food down was nearly impossible. I was so miserable and busy that the fear and worry pretty much stayed at bay. It also helped that my amazing network of girlfriends organized a surprise birthday party for me the day before I checked in to the hospital. They spent three hours showering me in love, laughter, and support. Their encouragement and reassurance that day helped get me through the home stretch. That night, as I sat in the chair and looked at my family all cuddled up on the couch watching a movie, the fear crept in.
Was this my last night with them? Would I still remember the first moments of their little lives? Would I still be able to sing their favorite lullaby at night? Would I be able to speak at all? Would my husband feel trapped if I didn’t come back to 100%? Would he still love me? And worst of all, If I didn’t come out of this would they ever know how much I loved them? So, I kissed them, hugged them, and fell asleep crying in my husband’s arms.
We headed to the hospital on Monday morning to be admitted and begin pre-surgical testing. I am not going to sugarcoat this, the hospital was not what I expected and the floor they put me on was not the one I was supposed to be on. So my care both pre- and post-surgery was not that great. (Though the surgical staff was amazing!) After a day of getting poked and scanned it was time for Matt to head to the hotel and turn in for the night. It was the first time I saw the fear in him. He realized that the next time he saw me I would be in pre-op, no going back. His emotions took over which rattled me quite a bit, but also allowed me to see a vulnerable side of him I had not seen and really needed to. He held me for a long time and after he was sure I was comfortable he left the room exhausted.
After he had gone I slipped out of my hospital bed and took out the notebook and pen I had brought. I sat on the edge of the and began to write: "You are LOVED. I am always with you, around you and in your heart. Make sure to always mind your manners and remember being a gentleman is one of the most important things. Be honest, not only with others but also with yourself. Please don’t choose a strapless wedding gown, you will be pulling it up all night long, and who wants to look at that? And most importantly, BE KIND, to everyone, all the time and kindness will come back to you." It was a letter to my children. I tried to write all the things I needed them to know but may never get the chance to tell them.
Now, I would like to say that I also wrote a letter to my husband, but in all honesty, I didn’t even know where to begin with that one. Plus, I was too weak and emotionally drained to do it. So I folded up the notebook paper and wrote "To My Angel Face" on the front and tucked it into my suitcase, knowing that if I didn’t come out of this the way I hoped it would be found and shared with each of them. I climbed back into bed and began to pray. "Dear Lord, thank you, thank you for this amazing life you have given me, please watch over my precious family, and surround Matt, Mom, and Jeff tomorrow with your presence. I am giving it over to you now Lord. Amen."
The next morning is a blur but I do have to say there was a certain calmness inside. I was ready, ready to go in and begin battling this crazy disease that had hijacked my life. I mean, really, whose brain actually falls out of their head? Anesthesia came for me about 8:30 and I remember being very concerned about farting during surgery - it may have been a little of the Valium talking though. The surgical room was cold and covered in stainless steel… and then I woke up in post-op. I looked up and a nurse named Jeff looked down at me and said “Jennifer, you’re all done… do you know where you are?” I remember blinking and realizing in that moment that I understood what he had said. I answered “hospital” and realized I also could speak and remember who and where I was. Now I know that people always say that the most significant moments in their lives are when they marry their spouse or see their children for the first time, but for me this exchange between me and Nurse Jeff, who I will never see again, was the single most significant moment of my life.
In that moment, all of my fears where pushed aside - I had survived the surgery! Someone had opened up my head, dug around, put me back together, and I was still me. With all of my memories and things that made me, me. The next 2 weeks are a complete blur of blinding pain, millions of medications, and sleep. I have brief memories of visitors, flowers, cards, and baked goods. But not much else. My mother took care of me over the next six weeks so that my husband could return to his job and my older two boys wouldn’t miss more school. The holidays came quickly only 23 days after surgery and although I am sure it was magical to me everything was a little fuzzy. Each day brought something new. A new nerve pain I hadn’t felt yet, a dizziness from walking around too much, and the headaches…. oh the headaches. Nothing like I had pre-surgery but still pretty awful.
Don’t get me wrong I was and am so grateful. But anyone who has gone through brain surgery in particular knows that it is a very long and stressful road to recovery. I mean, your brain controls everything, so if it is out of whack so is everything else.
I am writing this today 7 months and 3 days post-op, and I have to say I am doing pretty great. We have since moved back to Ohio, into a brand new home, and we are surrounded by our family and wonderful friends. I am not 100% and I still have some pretty significant side effects, but all in all I feel good. And looking back to the moment when the doctor said "Your brain is falling out of your head and crushing your spine," - well, I feel enormously blessed!
Learn more about Chiari Malformation at the National Institute of Neurological Disorders and Stroke.