I recently had a fellow mom and Chiari patient ask me about my story with Chiari Type 1 Malformation. After I spent a good amount of time writing this email to her I thought I might as well post it here in case someone comes along whose struggling with a similar situation. Hopefully my blog won't forever be about health issues:)
Anyway, here it goes:
When my 5th child was 4 months old I went from being an extremely active, energetic 29 year-old to being mostly bed ridden in a matter of weeks. One day I was getting ready for a clown job (yeah... I was a professional clown!), putting on my make-up and turned my head. With that one turn of my head, I had the strangest dizzy sensation I had ever felt. It was as if my head turned but my brain didn't. Even though it was an unusual sensation, I chalked it up to low blood sugar so I grabbed a snack before I headed out the door. In the days that followed, the dizziness worsened and I continued to try to eat the feeling away. Within a week, I realized that it wasn't low blood sugar but just couldn't figure out what it was. Everyday, the dizziness worsened and I quickly lost a lot of my independence.
The strange thing was that I would have days where I was fine and could conquer the world (or at least my little portion of it:) and days where I could hardly get out of bed. In addition to the dizziness, I was experiencing numbness/tingling in my extremities, muscle fatigue, brain fog, heart palpitations, mild sleep apnea and mild gag relfex issues. All of this came on so quickly and with out warning.
I finally went to the doctor after a particularly scary episode at the library. I had taken my children for our weekly visit when the dizziness hit so bad that I knew I couldn't drive home let alone gather my children and get them in the car. I stumbled to a phone in one of the offices, clinging to the book shelves the entire way. It took everything I had just to dial my husband's phone number! He left work and picked us up. We sat in the parking lot trying to decide if we should go to the ER or home. We chose to go home and I saw my primary care doctor the next day.
I spent the evening in bed, unable to even move my jaw without being dizzy. The next morning I woke up feeling completely normal...!!?? I went to the doctor anyway and tried to explain what was going on. Our doctor, John Hartman, MD, was a man of God who seemed to have the gift of discernment. Between that and the fact that I didn't just run to the doctor for everything, he was prompted to send me for a STAT MRI that very day. What a gift that was considering the average Chiari patient takes 4 years to get an MRI and diagnosis.
With the Chiari diagnosis, I was referred to Dr. Donald Behrmann in Orlando, FL which was close to where we lived at the time. It turned out that he specialized in Chiari surgery and was confident in his ability to do an aggressive first time surgery so his patients didn't have to have multiple surgeries. He was, however, your typical specialist who didn't really listen to me and was quick to write off some of my symptoms. He was even a bit skeptical about doing surgery in the first place because my cerebellar tonsils weren't down very far and wondered how I could be so symptomatic (he kind of suggested that it was all in my head- no pun intended:) . He ordered a more detailed MRI and with that, decided that surgery was recommended.
I had decompression surgery (C1 lamenectomy, suboccipital crainectomy and duraplasty) on May 16, 2005. When the neurosurgeon spoke with my husband after surgery he said that my compression was pretty bad after all and he was very glad that we chose surgery. As soon as I woke up in ICU from surgery, I knew that I was improved. My time in the hospital was painful but I was encouraged by the absence of my symptoms.
Upon discharge, I was told that I wouldn't be an independent person for at least 8 weeks. What I heard was that I would be completely healed and back to normal life in 8 weeks. Boy was I in for a surprise! A few weeks after my surgery, I was brushing my teeth and thought that the bathroom mirror was shaking on the wall. I reached my hand out to steady it and immediately realized that it wasn't moving but that my dizziness had returned. This was a very discouraging moment. After several months of recovery, I found that I still couldn't make it through the day taking care of my 5 children under 7 years of age. My neck would get too tired that I would just sit on the kitchen floor, with my head against the wall, praying for help. I would often put on a neck brace because I just couldn't hold up my own head. When this would happen, my brain would get compressed and pre-surgery symptoms would return, although to a lesser degree.
When I went back to the surgeon for help, he brushed me off and told me that his head would hurt too if he had five children to take care of. I understood that it seemed like a lot but this was my normal. But at that point I couldn't take care of my own family and I needed help (By the way, we had a tremendous amount of help at that time. Our family and friends brought meals for 4 months!!!).
I returned to Dr. Hartman, my primary care doctor, who kindly referred me to physical therapy. This was a huge turning point for me. Though the sessions were hard, I was finally regaining strength and range of motion in my neck. If I remember correctly, it was over a year before I really felt normal again and was able to care for my children. To this day, I don't understand why physical therapy isn't a standard part of the post-op recovery process for everyone who has that surgery.
Over the next few years, I would still have occasional dizzy days but, by the grace of God, they became fewer and farther between. Now, 9 years later, I rarely experience any symptoms of any kind related to Chiari. I have had two more children, which I had previously thought would be impossible and have run 7 marathons. I thank the Lord often for the miracle He worked in my life and for the overall good health I have experienced since my surgery.
That said, I continued to have heart issues over the years and wrote about that here on my blog
All in all, for what ever it's worth, here's what I would suggest for you.... don't give up!!!! Keep trusting our Heavenly Father to bring you through this and to grow you through it. Looking back, as hard as it all was, I wouldn't trade the experience for anything because it grew me as a person. It helped me to appreciate the sacrifices my husband made for me, developed perseverance in me and made me more sympathetic for others with health problems. It also helped me to be thankful for the littlest things.
Secondly, don't give up on pursuing an answer with the doctors. In my limited experience, I've found that specialists are a different breed and are quick to dismiss people and symptoms. I often wonder if there are so many patients who go in with symptoms that they've made up so docs always skeptical. I don't know but they're not in your house, dealing with the loss of quality of life that you're experiencing so keep going until you find someone who will listen and will help. I had a daughter with a rare, and potentially fatal intestinal malformation (required surgery at 3 months of age), I had Chiari and more recently this heart defect and THEN the near-death experience I had last week with the cardiac tamponade. And in all this, I had to push to get answers and to get help. Continue to take control of your health care and ask the Lord to guide you to the help you need. Pray also, of course, for healing- that's not too big for the Lord, either!
I also found some help in an online Chiari support group. The night I signed up for a group, I cried and cried at my computer desk. I wanted to be normal and healed and not need a group so it was hard to accept. Anyway, that was a help for me for a time. I would be cautious though because some of those people are only on there for attention, I guess, and go a little overboard.
Speaking of support, I learned the hard way how important it is to reach out to others in my time of need. When you reach out and let someone bless you in your time of need, you allow them to receive a blessing as well. The Lord promises to bless them abundantly for their willingness to help. It's also part of growing for you because it's humbling to have to call a friend and tell them that you can't bathe your own children. The Lord knows that I need some humility in my heart and, even though the lessons are hard, they bring eternal rewards. God promises grace to the humble- I'll take that, please:)
As far as your children go, I totally understand the helpless feeling you have. I know what it's like to not be able to take care of them and to feel like you're not being the mom you need to be. I am so sorry that you're in that place right now. Having gotten to the other side of that and finding myself there again to some degree because of my heart surgery, I'd like to suggest that you ask the Lord to help you redefine the mom that you need to be. Perhaps in this season, you aren't going to be in the yard with them and driving them all over town for their activities. I'm struggling with that now because my oldest is graduating next week and I am so limited in what I can do for her. I just spent 2 hours on line trying to order some decorations and plates and such and finally gave up. I can't take her to her rehearsal or throw her a proper graduation party. I'm not even sure if I can go to all of the activities planned for that weekend. But I am choosing to focus on the things I can do. Maybe you can lay and look through a stack of books with your boys or watch them play Legos on the floor for an hour straight. I don't know their ages but I know that so many moms are so distracted these days by being so busy that perhaps you can find blessings in a season of stillness where you can spend true quality time with them.
Your children can also learn a lot from your response to your situation. They may grow up to be more compassionate and long suffering because of what they see in you. You may be giving them gifts that most moms aren't able to bestow upon their children. God is so big and may have bigger plans than what you can see at this time.
I truly hope that this is just a season for you and that you will find comfort and hope in my story and healing and answers with time.