Benjamin's Brain Surgery

Benjamin has Chiari, which is a condition where your brain is compressed inside a too small skull and it suffers irreversible brain damage due to high cerebral spinal flued pressure. In the past 6 months he has become increasingly sick with horrible migraine like headaches almost every day,  dizziness, visual issues, falls where he breaks bones, and severe back and neck pain. He also is dropping things, and often cannot see to read or even play video games. The headaches and visual issues are symptoms of high pressure in his brain, and when I had them, they led to traumatic brain injuries that I will never recover from.

If the pressure becomes high enough, or his brain stem becomes compressed, he will die. If it continues at this level, it can cause microscopic changes that will affect him his whole life. Eventually he is at risk for developing strokes, seizures, pituitary failure, chronic migraines, white matter changes similar to multiple sclerosis, and so much more. The only treatment is decompression surgery. At this point, it is just a matter of when surgery is justified, as the surgery is quite dangerous and is only done when absolutely necessary.

There aren't any doctors in Las Vegas or Nevada that can help him, and the best doctor is Dr. Grant at Stanford in San Jose. Dr. Grant has agreed to review his case, and will probably perform a life-saving surgery to decompress his brain and remove part of his skull to allow for more room. There are doctors in New York, Utah, and Arizona that are also an option, but we have the same challenges of travel expenses and minimal insurance coverage with them.

We are declaring bankruptcy and will struggle to afford the medical expenses, and have no idea how to pay for travel.  They have agreed to help us with accommodations and payment plans for his care, we just have to get him there. It is a dangerous surgery and I know the medical side, while Damon is the driver and support system we rely on. It would be a miracle if both of us could go with him. Ben has a 50/50 chance of survival if he has surgery, and we will need each other if anything goes wrong, as there are many possible complications.

We need help right away. If Dr. Grant takes him as a patient, then we will probably be scheduled for surgery within the next month. If Dr. Grant cannot help us, then we are going to have to find another surgeon further away, and they have equally fast scheduling because of the serious nature of this disorder. Each Neurosurgeon we talk to has a different approach, and a different opinion on when surgery is necessary and what surgical approach to take. Ben also needs to see a geneticist, a neuromuscular specialist and others that are not available here, so any visit to a specialist out of state will probably include multiple doctors.

Please share this with your friends and family. You might know someone who could let us borrow a car, share miles for flights, or be the angel that we are praying for. If his symptoms continue to worsen, he could suffer irreversible brain damage, or die. He already has autism, ADHD, and depression and anxiety. I have Chiari and multiple chronic, painful conditions. I need to see out of state doctors too, but am not able justify it right now, despite the fact that my health is also rapidly declining. It would be a miracle if we could raise enough money for me to also receive testing and see specialists while we are there.  Please help. Even if every friend I have just donated $5 we would have enough to cover many of our expenses.  

This whole process is very scary. I have had the surgery Ben needs, and it is painful and hard. I do not want this for him. I cannot take him for surgery by myself. His autism complicates everything. He is high-functioning, but he is scared he will die. He needs to be treated by a great pediatric team that will help ease his anxiety so this does not traumatize him for life. He cannot progress socially or emotionally until we resolve these issues. He can no longer play outside, or go to school, or make friends. He is scared.  He is also very hard to "read". He reports pain backwards. Big illnesses and severe pain get a minimal response, while small cuts and splinters will illicite screams. He doesn't tell us what is wrong, and he is worse with doctors. I can see his pain because I am his mother, but many cannot.

The stress of trying to figure this out is making my husband and me sick, and we don't have a strong support system. If you know someone who can help us advocate for our son with our insurance, or help us get him disability benefits that would be really helpful. We need to see geneticists, therapists and  other doctors, but cannot afford the copays and deductibles.  I need people who can help me with housekeeping, and yardwork. We need a reliable car that can travel to out-of-state appointments, and I cannot drive because I am having seizures, so rides to doctors appointments are alway helpful.

We could also use help accessing alternative healthcare options. I take CBD oil and Benjamin has responded well to essential oils. I would love to work with a functional medicine doctor, a naturopath, or homeopath if possible. We all need counseling.  Benjamin needs occupational therapy, and we even need money/access to foods such as fruits and vegetables. All of us are allergic or intolerant to milk, and Ben and I are gluten intolerant, if not grain intolerant. Ben also cannot handle food dyes. I am unable to cook, and my husband is overworked and overstressed, so meals have been hard. We just don't have the energy to prepare food, and we cannot go out to eat because of the dietary issues. Finally, phone calls, notes in the mail, and general prayers and support are always appreciated. 

Thank you so much!