I have been having a few rough days, but I wanted to bring you the story of John and Chrissie. They are a lovely couple from Australia, and were kind enough to allow me to share their story with you today.
John and I were married in 2005 and we have two children, aged 18 and 14. We come from Shepparton, a country town in Victoria, Australia. John is under the neurology team at the Alfred hospital in Melbourne, and we’ve been lucky enough to come across doctors that have a little bit of knowledge about this illness.
Our battle (mainly John’s) with Arnold Chiari Malformation started around this time 10 years ago. John was diagnosed at the end of May 2005 and had his first decompression surgery August 9, 2005. He had suffered from headaches for two years prior to his surgery, and these were gradually getting worse, more intense and would travel from the back of his head around to the top. His vision was getting worse, his balance was so bad that you would think he was drunk all the time.
The first decompression surgery seemed to improve some of his symptoms, except the headaches. (Those have never gone away, just been made bearable with a concoction of drugs) After spending six weeks in rehab learning to walk again, John’s condition did improve, but not to the point he could return to work. He was pensioned (retired) at 30 years old.
In 2008, John had a second decompression surgery. His symptoms had returned with a vengeance. His headaches were getting more intense, his vision was blurry, he was sensitive to loud noise, his hand eye coordination was getting worse, and he walked and spoke as if he had been drinking all day. The scariest part of all, however, was John coughing and choking to the point he would black out.
He improved slightly after the second decompression surgery, but then he developed Hydrocephalus, and had to have a *VP shunt (Ventriculoperitoneal Shunt) put in. The shunt collapsed and had to be replaced. It collapsed again, so the doctors decided on a *LP shunt (Lumbar-peritoneal shunt), but one wasn’t draining enough. They put a 2nd shunt in and that was draining too much. He then had a valve put in one shunt so the doctor could control how much CSF fluid was draining. They finally got it right, only for John to have a bad fall and his shunt popped out. It took four months in and out of hospitals and another seven surgeries for this to be rectified.
10 years after John went in for his first surgery, we had expected John would do a bit of rehab, and be back at work in six months. Three weeks ago, John started needing to be in a wheelchair, except for when he is at home. We now have the car equipped with a trailer to get him about with his wheel chair.
John has had a lot of falls recently and will continue to do so. His body aches all the time. His hands go numb. He loses feeling in his legs. His speech becomes nearly inaudible. His vision is getting worse. He drools without realizing it. His appetite is nearly next to nothing, and when he does eat, it intensifies his headaches and makes him feel nauseated. His short term memory is shocking. He takes at least 20 tablets (pills) a day as well as painkillers in between.
The weather also impacts John, and makes it hard to have good days. His pain is taking a toll on him. He is so sick of hurting, and as his partner, I struggle every day. Although I’ve been with John since he was diagnosed, I will never truly know how much he is hurting or how much he really suffers on a daily basis. I wish I could just wave a magic wand over him and take all his pain away, or just wish that he never got sick in the first place.
There have been a many times I have thought, as hard as we have it, there is always someone out there worse off than us. There are parents mourning the loss of their child. There are children mourning the loss of their parents. There are families struggling to say goodbye to loved ones. There a families trying to cope with a terminal illness. I really could go on, but you get my drift.
John will never improve. Now it is just a matter of getting the medication right and making things easier for him. That is why we now have grab rails throughout the house. He will continue to do physical therapy, speech therapy, and the dietitian will keep a check on him. There has been a bit of adjusting with the rails and wheelchair, but as a family, we will get there.
Thank you for taking the time to read this.
Chrissie and John
*A ventriculoperitoneal (VP) shunt is a device used to relieve pressure from the brain caused by fluid accumulation. VP shunting is a surgical procedure that is primarily used to treat a condition called hydrocephalus, which occurs when excess cerebrospinal fluid (CSF) collects in the brain’s ventricles. CSF cushions your brain and protects it from injury inside your skull.
*Lumbar-peritoneal shunts (LP) are used in neurological disorders, in caseses of chronic increased intracranial pressure to drain excess cerebrospinal fluid (CSF) from the Subarachnoid cavity.