Saturday, May 18, 2013

Live with Chiari from a husbands view

This was sent to me by my husband for all of you I am amazed that he did this. My husband Cj sharing to the world. With love I love you Cj, Heather

I may be one of the people who you never hear from. I’m the one who gets to stand by and watch my whole family get sick, one by one. I sat and watched my wife have issues for years. We went from Doctor to Doctor trying find out why she was having ...all of these problems. None of them were able to tell her why she was sick. Each one wanted to help, but this disease is not an everyday issue like cancer. We got lucky enough to have a Physicians’ Assistant notice that Heather had an abnormality in her Cerebellum. This was the first time we heard of Arnold Chiari Malformation. My wife found this out while I was out of town moving my mother up and into our home. I was 5 hours from home and unable to be with her. I received a phone call from my wife who was scared and trying to understand what this was and why she had it. We started down the road that put my wife into surgery, a scary surgery that Chiarians all know too well; decompression, removal of the tonsils, Dura patch and shaving down the C1 (Lamanectomy?). We had traveled to Las Vegas to a Doctor that we believe is good at what he does, not how he approached the patient. Her Surgery was done right. Her head healed after a couple of scary weeks and a return trip to Vegas. We were optimistic about the surgery if it would really help her out, but now we understand that she has been impacted for so long that the damage was done. Maybe if it was found years earlier she would be better off. We have a great group of Doctors who really do care and are trying to make her as comfortable as possible, but I feel that down inside, that’s all they can do. But they are trying and they seem to have compassion. This was in 2009.

  This would be enough for most, but then we started noticing problems that our children were having. Heather started asking the questions that I did not want to hear. Do our kids have Chiari? I am still to this day watching what this disease has done to Heather. Our children do not need this. I feel that I am still in denial. My daughter was diagnosed in 2010-2011. She started having seizures and odd pains. She had been diagnosed with a bipolar-rage disorder when she was 7 and we had been fighting that for years. We were always scared of what puberty was going to unleash on us. We had been warned that this was when her disorder would come to a head. Then a funny thing happened, she hit puberty and became this mellow, goofy child. We found out first hand that Chiari causes many “side effects” hers was this mood disorder, like her mother. Heather was never diagnosed that early, but she was in her 20’s. When she started going downhill the neurosurgeon that we found preceded with the decompression surgery, the one her mom had. She had the surgery in January 2012, she was 15 years old going through this. She still has seizures and one of her “add-on” disease is EDS which basically is super elastic tendons and ligaments. She sprains her ankles and her knee cap pops out often. She also has internal problems that we are working through, once again very much like her mom, but she has a better chance of overcoming this because we were able to act early. She gets tired and cannot get through a whole day of school, going shopping or going out with the one person that stayed by her side. She has high expectations for herself and has almost a 4.0 GPA after brain surgery. She struggles to have a regular teenage life, but she doesn’t get to. She is pretty incredible, really one of the strongest kids I have ever met. This is still a lot more than most can deal with.

  Now after hearing about that, it’s hard to say that our son was also diagnosed with chiari and his herniation , I believe is larger than either my wife or daughters. He is 10 years old and the sweetest kid. He really cares about everyone around him. We were told once that he did not take a sandwich to school and we should check his lunch before he leaves to school. We thought about it and knew that he made a PB&J sandwich. He threw it away so he could eat lunch with his friend who has a peanut allergy. What 10 year old does that? We noticed that he was tuning out for a couple of seconds at a time and these episodes increased. A number of tests later and he was also diagnosed with JME, which is a form of epilepsy and his tuning out were seizures. He was put on a heavy dose of meds to control this, but they did not completely take them away. He was falling behind in school because he does not retain the amount of work that is given. Like his sister, we put him on home and hospital. He is doing a little better, but our loving active child is more lethargic and tired. It is hard for him to do most things. He is going to be scheduled for surgery soon. This is the hardest thing to wait for. It’s not easy to watch first your wife and then daughter go through this. Now our son gets to have his life really turned upside down as he goes into surgery, and then starts the long road to recover. My Wife is strong. My Daughter is Strong. They have to be, they are living with this disease. I know that they will guide Jax through this with their first hand knowledge.

  I get to watch again as another member of MY family goes through this. I work and provide. I’ve had a second job. I make sure that we have great medical, because if I did not, we would truly be screwed. I commute 1 hour each way to provide for my family. We are moving into the mountains so my family has a place that they can relax. Jax and Em will be able to go outside and I don’t have to worry about traffic. I put my head down and move forward. I do not ever wish for something else, because this is MY family and we will get through anything. It is hard, and I don’t think that the husbands, wives and family really know how to handle this, but we do for our loved ones. There are going to be people who move on and leave your life because they cannot handle the illness. We have seen our fair share of that. You keep the ones that stay and let the others go. In the end, we choose our family and friends. We are always there, we will always be there and we stay strong to support and Love our family. I’m not as well versed as my Wife, she really has gift for what she gives to Zipperheads. I thought that for Her, I would try to give you all my side as a Father and Husband who has to watch his family go down this road.

Heathers husband founder of Zipperheads for Chiari