My Daughter Maren

By Lisa B

July2010, Maren went to a friend’s house. While playing on a trampoline, she became very light headed. Her vision blurred and her head began to hurt. Her brother drove to pick her up. As soon as she arrived home we knew something was very wrong. We took her to an Urgent Care where she became much worse with extreme head pain and trembling. She then began having seizure activity and they took her by ambulance to Children’s Hospital in St. Paul, MN.  

She was there they noticed the Chiari on MRI and diagnosed her with mycoplasma. This usually causes walking pneumonia but for Maren it caused neurological issues. They said it was because she was “compromised” neurologically due to the Chiari. We tried various meds and spent most of the following year in the ER monthly or even biweekly. She missed 42 days of school and had to leave ALL of her sports. It was agony for an outgoing, athletic, energetic girl.

Even going out with friends became difficult. She spent another week in the hospital in May where it became apparent surgery was likely the best option. They tried injections above the eyes, at the back of the neck and shoulder. The lidocaine took the pain away for only for a few hours. Her MRIs showed a small Chiari. It wasn’t severe but, as every neurosurgeon I have spoken with has said, the herniation can be extreme and not be symptomatic or small and be extremely debilitating. They did a fluid flow study and there was a compromise of the fluid flow. Her pain was ENDLESS.

Her father and I hardly recognized her. I cannot describe to you, unless you have been there personally, or have been a parent or loved one of a chiarian how it rips your heart out. Our daughter lived in extreme pain and we could do nothing. Pain meds rarely helped unless intravenous at the ER for an hour. Her pain was at the base of the skull and radiated forward. Her neck and back hurt more as time went by. She had a few minor issues swallowing, she was dizzy and her equilibrium was getting more off as time passed. Her “seizure like activity” was agony to watch and frightening for her. We had seen Mayo early in the Fall and now in May of 2011 we were ready to look at surgery. We met with two of the Twin Cities most reputable surgeons. They both said surgery would likely help and they felt it should be done ASAP. Her surgery was performed July 29 of this year.

In the hospital things went quickly downhill though from a surgical standpoint the surgery itself was a success. They did patch the dura, remove a portion of the descended tonsils, part of the top vertebrae and shaved down the inside of the skull- invasive but fairly typical surgery. However, Maren had fluid quickly build in her lungs. As the intravenous meds built in her system she started having violent reactions to the medications ranging from horrible itching to the point where she caused her own skin to bleed to hallucinations and extreme nausea. To combat these issues doctors tried to reduce her pain medications. Her father and I had to watch her scream in agony and we honestly didn’t recognize the child in that bed. At day ten we turned the corner and she was discharged on day 11 remembering almost nothing. Thank God. The following two weeks were brutal but at one month post op she was able to handle light and actually went outside to sit on our front porch. I hadn’t seen her enjoy the sunshine or any type of light for almost a year.

Our child has been given back to us. She has no pain except the normal post op stiffness at the days end. She is attending school and social events. We went to Lincoln, NE this past weekend to walk in an awareness walk for Chiari and she walked the entire two miles. Naturally after that she was very tired. We can’t let her overdo it. At the walk she was able to talk with other children who I really think were inspired by her. It is our deep hope that somehow we can inspire others, support others, and make a difference. No one deserves to live in the darkness of constant pain.

I attached a picture of Maren at one month post op sitting on the porch. It had been a year since we had seen that smile.