Benjamin's Brain Surgery

$370 of $10,000 goal

Raised by 6 people in 9 months
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!
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We are stuck!

Based on incomplete MRI readings and a neurologist who knows very little about Chiari, we were told that Ben's symptoms were not Chiari related, and that we could seek a second opinion if we wanted, but she would not refer us to a pediatric neurosurgeon. My husband was there, and he just walked out and said it was just like it was with me and that we would have to keep looking until we found a doctor that would work with us. I appreciate his calm and perseverance throughout my illnesses and now Ben's!

The next day we received the report from the neurosurgeon at Stanford. He says that Ben has Chiari, he definitely needs to be scanned and followed for it. Dr. Grant sees signs of crowding and suspects compromised CSF flow. He wants to see Ben and do requested that we get his eyes checked, and his spine scanned to check for a syrinx (or CSF leak into the spinal column). We got Ben's eyes checked - they are fine - so it's not his eyes causing the double vision or blurred vision. He doesn't even need glasses.

Last week we received the results from his gastric emptying study. He has gastroparesis. This means his stomach doesn't empty completely after he eats a meal. It makes him sick, and results in him having to run to the bathroom several times a day. It is a sign that there may be something wrong with his Vagus nerve (the pressure in his brain can be damaging it).

Ben has some alarming new symptoms too. He gets spontaneous nose bleeds with the migraines, which we suspect are really pressure headaches. This may be a sign of high pressure in his brain, and in some, it becomes a CSF leak. He has more behavioral issues because he is in pain, and he has episodes where he rocks and stims, which he didn't have before this all started. Sometimes I worry that these episodes are seizures because he basically becomes unresponsive, and his gaze becomes fixed and unfocused. He also has had strange and almost violent bouts of the hiccups that make him want to vomit. I had all of these symptoms with increasing severity prior to my surgery, so these things scare me. He has not responded to medications, and so far, dietary changes have not helped his stomach issues.

I am waiting on referrals. Dr. Seiff saw him in January, and has agreed to write us a referral to Dr. Grant. Unfortunately he has been out of town and had the flu, so he is behind and cannot get that done until later. We will have to find a new pediatric neurologist, and we are trying to get into his pediatrician to get her to refer us as well.

Benjamin needs to see a counselor. He is scared of the surgery. He is scared he will die. He is scared I will die. He is struggling to cope with the pain and loss of ability. He is being picked on by the few kids he interacts with. He wants to be good and cries hysterically whenever he messes up. The copays for counseling are too much for us to pay at this time. I am negotiating a sliding pay scale with my counselor, but we cannot afford for me to see her, and I would crack without someone to vent to. Hopefully we will find a way to get Ben into therapy soon. We also have to find a way to travel to Stanford for an initial evaluation and consult. Ben will have to be sedated for the MRI's that are needed, and it will take time to get everything done. I don't know where we will stay, how we will get around, or what to expect. I will call and work all that out as soon as I have a referral! I am trying hard to get our insurance onboard. This process sucks!

I hate all of this. I hate watching my son suffer everyday! I hate having to explain that he is homeschooled because he is too sick to go to school. I hate doctors that don't listen and are in too big of a hurry to look things up. I hate knowing what my son is going through and will go through. I hate waiting for things to get worse, or for him to have some kind of permanent damage. I hate how slow the system is. I hate that I don't know how to give him what he needs!

We are so grateful for all the love and support that everyone is giving us! This is a long process, and we are at a point that is hard to endure. Thank you for the financial help! It made his gastric emptying study, and MRI's possible. We were able to get his eyes checked, and all the copays for his medications that were high for the new year. We still have so far to go, but I know we will find a way. It is so nice to know we are not alone. Please continue to comment, share, and help wherever and however you can.
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Benjamin recently saw his gastroenterologist. They are concerned about the possibility of gastroparesis. It is a sign that there might be damage to his Vagus nerve. We need things to hurry up, but have no idea what we'll do if they do.

Dr. Grant at Stanford has agreed to look at Ben's scans and become involved in his care. He is the top pediatric neurosurgeon in the Chiari field on the West Coast. (We really want him to do the surgery if we can figure out how!) I don't know what that means. It might mean that we are going to Stanford for more scans and an appointment in a few weeks, or it could just mean he looks at the MRI's and tells us no. I don't think Damon or I will take no for an answer, there is just too much at risk . We need someone to actually see Ben and listen to our concerns, not just look at a picture of his brain and make a call. If he sees us and Ben and then we mutually decide surgery isn't the right option for now that's a whole different situation, but I don't think any of us see that as the right option. Even Ben seems resigned to the fact that he'll have to have surgery, and is making plans accordingly.

We also have an angel working for us in California who is trying his hardest to secure funding for travel, lodging, and medical expenses. So far that is a slow process, but it's a huge comfort to know that there are people out there trying to help us.

I am working on getting Ben SSD, and our insurance on board to cover at least some of the medical. We are getting gastric emptying studies and ultrasounds of his abdomen done. I am trying to find a way to afford counseling for him because he is very anxious and upset by this. We are figuring out possible travel options and how to pack an Xbox, because that's all he really worries about out loud. I spend a lot of time on the phone and online. I am researching Angel Flights, and we have a possible connection with a Shriner who could sponsor us. So many possibilities, yet so much to wait on. This is much harder than I can explain.

Thank you to all those that are helping and sharing this. I know the answers are out there. Please keep us in your prayers, and if anything comes to mind, or you happen upon anything that could help us, please let me know!
We still try to have fun.
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$370 of $10,000 goal

Raised by 6 people in 9 months
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