I have written this post in my head for weeks. This is so much harder than I can describe, but I am going to try, because we need help, and people need to know what this is like. I need to be able to find others who have had this experience. I need other mom’s who have walked this path and can help me walk it. I need to know that you can survive this as a parent. That my heart won’t break, and that if the worst happens, we can endure. Maybe I can be that person for someone else in the future.
Please follow the link below to donate to my son’s GoFundMe Account if you can!
My son, Ben, is sick. He has autism, ADHD, anxiety, depression and asthma since he was born. This was hard enough. This was enough to make me cry, readjust my expectations for him, cause us many hours of prayer, work and thousands of assessments, therapy hours, parenting books, classes, trainings, and thousands of dollars. Recently, he began having stomach issues. He finally told me he feels like he is going to throw up, and so he will run to the bathroom, and then, he doesn’t throw up, but he does have to go to the bathroom. It is very weird and complicated, but must be awful! This happens every 30-45 minutes on bad days, and at least every two hours daily. He was missing school because of it. Teachers were upset because he was always asking to be excused (even though it was part of a 504b that he could go to the bathroom anytime), and they were docking his grades. So, we pulled him out of school. I hoped that lowering his anxiety about tests, and lowering the demands on him in general would calm the stomach issues down. I was wrong. They went from maybe a few days a week to everyday, and they got worse.
So we saw more doctors. He had an EGD, a capsule endoscopy, and a colonoscopy. He was tested for autoimmune diseases, vitamin deficiencies, and genetic issues that I have. The tests came back normal, except for a vitamin D deficiency and the MTHFR gene mutations that I have. We saw a specialist that gave us the counsel to watch his weight and diet to prevent heart disease, but otherwise the MTHFR gene mutation shouldn’t be an issue. His gastroenterologist is concerned. Ben is still growing, but this issue isn’t normal, and I am grateful that he listened and isn’t just dismissing it as a “symptom” of autism. Ben now has to be checked for gastroparesis, and then we start looking at managing symptoms and checking broader issues like his gallbladder and nervous system.
Then this fall, Ben fell, again. He sprained or broke his other foot. Falling is normal, except in these falls, Ben cannot feel his legs below his knees. He had a full day where he couldn’t feel his legs (we went to the ER, but there was nothing they could or would do). Then it was days of no feeling. The next step is a neurologist. We find an excellent neurologist who specializes in working with kids with autism. I love her. She listens to me, and is great at getting Ben to talk. She is also calm, and measured in her approach, and familiar with many of the associated issues that we are dealing with. She is a lifesaver in all of this. She was the first doctor who would order the MRI’s that Ben needed to diagnose him with Chiari. She is the one that got the sedated MRI’s ordered after I spent years trying to find a neurologist or neurosurgeon who would take Ben as a patient and screen him for Chiari, just for prevention and future health care sake. I don’t want Ben to have Chiari, but I needed to know if he did.
Chiari is a rare brain disorder where the bottom or your brain, the tonsils, or the cerebellum are pushed into the spinal column. This can happen because of trauma, a malformation of the skull or spine, or from genetic disorders like EDS that cause ligaments and joints to be too loose. If the brainstem is too compressed, the pressure inside of the brain, and the disruption of the flow of cerebral spinal fluid can cause serious damage. In me, my brain was squished too tightly for CSF to flow from my brain to my spinal cord. The pressure inside my brain became high enough to first cause microscopic damage, and then major damage. I have a pituitary gland that was essentially smashed, several areas similar to the type of damage seen in MS patients, and may still be experiencing issues from the pressure being to high. The pressure was so high that my surgeon told us the bone had worn thin in the area where he did surgery. What I have is called Hypoplastic Posterior Fossa, or Chiari Type 0.
Chiari is measured by how far the bottom of your brain descends into your spinal column. After 8mm, your brainstem can become involved, and that is dangerous! If a syrinx (pocket of CSF fluid outside of the spine that puts pressure on the spine) forms, then doctors know the pressure in your brain or spine is too high, and is forcing itself out through a weakness in the protective covering of your spinal cord or brain. (I have a small syrinx on my brain/spine from surgery). With a measurement of 8mm into the spine and a syrinx, neurosurgeons start to automatically consider surgery. Anything under 5mm is up for debate. Chiari Type 0 means that my brain had not descended into my spinal column AT ALL! However, the damage I experienced was extensive and irreparable. If I did not find the specialist I did, when I did, and he hadn’t diagnosed me and done surgery when he did, I probably would not be writing this.
So Ben most likely has hypoplastic posterior fossa, or Chiari Type 0. He also has a 4-5 mm dissension of the tonsils of his brain, which means he almost meets the radiological criteria for Chiari Type 1, which is any dissension over 5mm. I know it’s complicated, but hang in there. This is for all the new mom’s who know something is wrong, but cannot figure out why the doctor’s won’t listen! They look at a picture and make a determination based on an arbitrary measurement. Those with Chiari know the picture means very little. It is the symptoms that go with the picture that matter! Anyone can have Chiari. Many people get diagnosed during routine exams. Most people have no symptoms and are fine, but then we don’t know the full extent of the damage this can do to people, so that may be an incorrect assumption.
My point is that even though Ben doesn’t meet the automatic diagnostic criteria for Chiari Type 1, and is not an immediate surgical candidate, his symptoms are alarming and are the reason that his Dad and I feel he needs decompression surgery. The only treatment for Chiari is decompression. It is awful! It is also not a cure! It is simply a way to prevent as much damage as possible, but because it is so close to the brainstem, because it is brain surgery, it has to be done only when necessary, and the judgement of when that is depends on the surgeon. Every surgeon has a different point at which they believe a person should get surgery. Some rely on the radiology alone, others won’t see you until you meet certain radiological requirements and then weigh symptoms into their assessment. Others, rely heavily on symptoms and use the MRI’s and other images as guides for what type of surgical intervention is most appropriate. Those familiar with Chiari fit into this latter category. It doesn’t really matter how far your brain is falling into your spine. What matters is how high the pressure in your brain is, and what is causing the increase in the pressure.
Ben’s scans show a 4-5 mm dissension. They also show that his CSF flow is good, which is a relief. However, there is another condition called psuedotumor cerebri where the pressure is still high because of other factors, and the only way to check the pressure is to do a lumbar puncture. The problem with doing a lumbar puncture is it can suck the brain further into the spinal column, and cause more of a problem than you started with, so getting a lumbar puncture to check for high pressure can create the issue that you are trying to solve in the first place.
If you aren’t crazy or lost yet, then you deserve a medal!!!!
The classic symptoms of Chiari are dizziness and headaches. Ben has always complained of minor headaches. I usually ignore him, or tell him to get a drink. Then he turned into demon child who snaps at you, cries out in pain suddenly and loudly, or lies on the couch with his blanket over his head whimpering. His eyes would glaze over, his face goes blank, and he stops responding to even fun stuff. He stops moving. He sleeps. Ben stopped napping at the age of one. He moves constantly. He is animated and loud and constantly talking. My son just stopped. He stopped being him. His eyes get all glassy, he lays there wrapped as tight as he can get the blanket around him, and he just is. I have never seen him do this. Not even as an infant. He constantly moved in his sleep. Now he just sits there. I know he is a teenager, and they are moody and sleep more, but his is so wrong. It is so scary! I would take him to the hospital, but how do I tell them that my son went from being a noisy, cheerful, constantly moving ball of energy to this glassy-eyed zombie and have them take me seriously? What would they do? How can they help us?
Ben finally started explaining. His head hurts – bad. He cannot see straight. His vision is blurred, and it starts to tunnel. He gets sharp, stabbing, knife-like pain in the center of his forehead. He has double vision. He is sensitive to sound, smell, light, touch, and movement. He has sharp, stabbing pain in his neck and chest. He has severe back pain. Ibuprofen does almost nothing to help him. Ice, heat, back-rubs, sleep, and every natural or alternative remedy I can think of do very little. The migraine medication prescribed by his neurologist has done nothing, The migraine medication from his gastroenterologist for abdominal migraines has helped with the nausea a bit, and maybe reduced some of the intensity of the headaches, but not really. He just started it, so we’ll see.
The neurosurgeon we had a consult with a few weeks ago confirmed my fears. These headaches are probably pressure headaches, or Chiari headaches. The eye involvement means his pituitary gland is under high pressure. The fact that he is nauseated so often yet never throws up may mean his Vagus nerve is damaged and that he is losing his gag reflex. In kids, the headaches can present as sharp stabbing pain in the middle of the forehead. In adults, it’s usually pain at the base of the skull. Ben also reports most pain weird. He has a tendency to not tell us about the worst pain. He breaks bones and can put his full weight on it, even though he “wants to scream”. Splinters will actually make him scream and cry. He didn’t tell us about the headaches. We had to notice them, and then he started to figure it out.
So where are we now? I know Ben has Chiari. I have Chiari, my sister does, and so do others in my family. Some of us needed decompression, others didn’t. We believe Ben does. We saw my neurosurgeon with Ben. Because Ben isn’t a radiological “emergency” (a dissension of 8mm or more with a syrinx), he did not feel qualified to make the judgement call as to whether our son needed surgery, nor did he feel like he was the surgeon to do the surgery on our child, which I absolutely respect and am thankful for. I would rather he not do surgery, than do it and screw up! He confirmed that Ben does have Chiari, that the headaches are most likely pressure headaches, and that we need to see a pediatric neurosurgeon who specializes in Chiari. There are maybe a 5 in the nation. One is Doctor Grant at Stanford, who we are waiting to see if he will take Ben as a patient. He has agreed to look at his scans and we have sent him Ben’s records, but I have not heard back, and the wait is killing me.
We are waiting. We know we have to take Ben out-of-state for surgery. There just isn’t anyone here who can do the surgery safely. Ben needs a pediatric surgeon. He is big enough to see an adult neurosurgeon, but his autism makes it complicated. What we see as major changes in our son, others cannot see. His withdrawal from interaction, the headaches and pain are all cues that only someone very familiar with Ben would even notice. That scares me! He won’t talk to the doctors and tell them what is wrong without a lot of prompting. He looks like he can, and is his behavior and size seem to show that he could, but he can’t. Doctors expect him to report accurately, but he doesn’t! He feels pain all wrong and talks about it all wrong for their needs. He withdraws from anxiety and fear. He watched me go through the surgery, and he doesn’t want anything to do with the process. He knows what is going on, but consciously avoids it. He doesn’t want “anymore diagnosis'”. He doesn’t want to die before me. He doesn’t want surgery without his Xbox. (LOL)
I cannot do this. I do not know how. I had this surgery. I can feel it. I can quite literally feel where they cut open my head, removed bones, and parts of my brain, put in patches, and then stitched me back together. I can feel pain there constantly now due to some other random event, but I also remember the surgery and it’s aftermath quite vividly thanks to PTSD. The surgery is major trauma. Most people have PTSD of some form from it.
I have what doctors call a traumatic brain injury, both from the pressure in my brain, and then from the surgery. They had to dissect my cerebellum to make room. They thought it wasn’t important. Biopsies done in studies show that the damage from high brain pressure is so extensive that it almost isn’t functional anyway, but it is important. Turns out the cerebellum does all kinds of things from mood regulation, to balance, to helping you remember words, or plan your day. It’s making planning an out-of-state, major brain surgery quite difficult! I have panic attacks when my phone rings. I am afraid to check my e-mail for responses from the doctors. I am panicked about every headache. I feel guilty for parenting him. Why not just let him play games and have fun? He’s sick, he may die in surgery, or he might die in his sleep from the pressure in his brain. Why fight him? Why make him go places he hates, or do schoolwork? What’s the point? He’s already autistic. He’s already struggling with social cues, and puberty, and emotional regulation plus a hundred other things. Now this!?!?
I want to wrap my 5’2″ 115 lb kid up in my arms like I did when was a baby and never let him go. I want to play video games with him, and talk to him for hours. I want to take him to Disneyland, and Lego Land, and to Universal Studios to see the Hogwarts Castle. I want him to ride all the roller coasters he wants (he won’t be allowed to after surgery). I want to go to parks and museums and travel to Europe and Asia with him. He wants to see Pandas and zoos. He want to go to aquariums and museums and theme parks. He would love to swim in the ocean and ride roller coaster and generally just be a kid.
I want to run away from my illness and his and hope it never catches up.
I don’t want to answer my phone. I don’t want to declare bankruptcy so we can stop the stupid lawsuits from garnishing our wages and preventing us from having even enough to afford food and medicine. I don’t want to deal with this stupid war on opiates #shareourpain, and I don’t want to spend hundreds of thousands of dollars that we don’t have on doctors and travel to doctors, and tests, and painful procedures, and surgeries that are traumatizing and extremely painful!
Maybe it won’t hurt as much for him as did for me. Maybe he’ll recover faster because he is a kid. Maybe his doctors and the hospital will be able to make this as calm and non traumatic as possible. Maybe the Xbox will make all the difference. Maybe he will get surgery soon and this whole nightmare will be a memory soon. Maybe we’ll get the help we so desperately need to pay our current medical bills, to fly all of us to Stanford, to pay for MRI’s, genetic testing, surgery, extended hospital stay, housing for his Dad and I, food, transportation while there, consultations from other specialists, a stay in the neuro ICU, more CT’s and follow-up MRI’s, pain medications, follow-ups with his neurologist and hopefully the neurosurgeon, and so many others. We barely have a reliable vehicle, and I cannot drive because my license was suspended when I started having seizures.
Right now there are three worst case scenarios.
1. We cannot find a competent surgeon to do the surgery until it is too late and the damage to Ben’s brain is as bad as mine or worse.
2. Ben gets surgery, but it goes terribly wrong and he suffers form infections, brain slump, multiple follow-up surgeries, disability, and eventual death.
3. Ben dies in surgery. (It’s basically a 50/50 chance).
Best case scenario is that we find a good surgeon. Ben gets brain surgery soon. It hurts, but it’s over, and then he doesn’t need any further intervention. He may have some lasting symptoms like migraines, but generally things improve and he is able to live as full a life as he can with his other conditions taken into account still. When your best case scenario is brain surgery in another state, that will take every resource, favor and effort that you have, life is hard. When you are simultaneously planning a complex surgery for your kid, trying to prepare him, while also planning to lose him. It’s scary. When you are having intense flashbacks and panic attacks every time your phone rings, well, it’s just a bit overwhelming. I don’t know where to start most days. I spend a lot of time just watching him. He isn’t cuddly anymore. He still wants our approval and attention, but in different ways. He likes it when I watch him play video games, so I do. I rub his back when I can. I hug him when he wants to. I let him come close when he is willing.
Right now every nerve in my body is on edge. I feel like I am being rubbed down with sandpaper all day, or that I was outside in the cold to long and now I am starting to thaw. It hurts to be touched by anything. It just hurts to be. I cannot begin to describe how much and how horrible the nerve pain is, but I would gladly take this if it meant Ben would be okay. I would do almost anything to change this. I cannot. I am trying so hard to accept God’s will in all of this.
I am a member of The Church of Jesus Christ of Latter Day Saints. We have a belief that we call the Plan of Salvation. It is that families are eternal. That we are meant to be together after this life. I take a lot of comfort in that belief. I am comforted by my belief that God is ultimately in control. That He is a benevolent and loving Father, who loves me, and loves my son. He will use this for our benefit. He did not give Ben Chiari, or me my illnesses, they are just part of this life. He can take them away, but we also need to learn to be more like Him in this life, and to draw near to Him, and trials and suffering teach us in a way different from any other experience. We need the bad to know the good. It’s complicated, and I don’t fully understand it, but I will try to explain what I do later. I have faith that I will fully understand it when I die and my body and mind are perfected.
I believe that God is in charge of life and death. That Ben with live if is God’s will. That all will work out according to His grand design. I believe that He has a path through all of this that I cannot see, and that when I put my faith and trust in Him and put my fear aside, those things become clear. I have seen this happen in my life. I mentioned before that I could have died if I didn’t meet the surgeon I did when I did. I do not believe it was an accident, or chance. I believe God put the people in place, and the necessary steps in place to save my life, and carry me through that time. It was a miracle, and I am so grateful to have that in my life so that I can trust that He will do that for my son.
It is hard to be patient and wait for those steps to appear. It is so hard to find what the steps are, which choices, surgeons, direction is right. We feel strongly that we need to seek surgery for Ben as soon as we can. We know he is starting to experience microscopic damage. We know the pressure in his brain is high. We know the only treatment is surgery. How all of it will come together is still something only God knows. I trust His plan for my life, even if it means losing my son. I trust His plan if it means my life ends soon from my own medical issues. I am trying to prepare myself, and my family for anything God has in store for us. I am trying to be in tune with his Spirit so I can know what decisions are right. I am trying to live my beliefs. It is not always easy.
When I have faith, when I put my trust in my God, and I lean on Him and His greater knowledge, I have peace. I know that this life isn’t all. The suffering I am enduring now, what my son is going through, they are all a small part of our eternal existence. They are necessary. We are learning many important lessons if we are listening and paying attention. The struggles we go through are not given by God, but He can use them for our good and He is in charge. When I have faith in His plan for our lives, I do not need to fear. I don’t need to worry about money, travel, doctors, or there future. What we need will be provided. I still get to work and figure things out, but worry and fear are not a necessary part of this. I still struggle with them daily, sometimes hourly. I am learning. This is an impossible situation. It is hard and scary, frustrating and overwhelming. We are so stressed out it is making us sick. I feel like I am being punched in the stomach every time I think about it, but we can get through this. When I have faith and trust in God’s plan, I have peace. I don’t know how to do this, but God does. I know that there is an answer out there. I just have to be patient and find it.