Cody’s Rare Brain Battle Isn’t Over Yet
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Cody’s Rare Brain Battle Isn’t Over
[Pic of AVM mass connected to Cody's vision]
Last fall, our grandson Cody was diagnosed with an arteriovenous malformation (AVM ) in his brain. An AVM is an abnormal tangled mass of blood vessels connected to other arteries and veins in the brain that can disrupt normal blood flow and oxygen from circulating.
Brain AVM's are rare, occurring in less than 1% of the population. Most of the time it goes undiagnosed until it ruptures causing a severe hemorrhagic stroke that can lead to paralysis, loss of speech and sight, brain damage, or death. Those that are found before they rupture can require multiple risky complex procedures and years to complete.
AVMs are different from tumors as they are considered "eloquent" brain matter. That means Cody’s AVM mass is part of the vital blood path that flows throughout his brain. Most likely, Cody was born with the AVM, and it grew over the years.
Last December, the AVM reared its ugly head with a series of unusual headaches and vision changes. Cody’s girlfriend recognized something was seriously wrong and brought him into the ER. They quickly moved on getting a CT scan, which led to an MRI and MRA—discovering that not only did Cody have an AVM, but it was large!
NO PERFECT FIXES
Considering the size of the AVM, the best medical options left Cody with no perfect choices:
Option 1: Leave it alone. (Basically, a ticking time bomb.) Cody is young and the risk of hemorrhage increases over time.
Option 2: Multiple surgical procedures that incrementally choke off blood supply to the AVM mass. The surgeon will use an onyx material to cut off the blood flow. If successful, there’s a lower chance of a brain bleed that could cause a stroke.
Most likely half of Cody’s eyesight will be lost. Follow-up radiation after the surgical procedures may be needed if the AVM can’t be completely treated. Radiation can cause complications like cyst formation in his brain or damage to healthy tissue.
Option 3: Invasive surgery to completely remove the mass has the highest chance for bleeding in the brain and 100% loss of half eyesight in both eyes. It could cause memory loss as well.
CODY’S CHOICE AND LOSS OF SIGHT
Cody chose option two. The first phase of surgery was a little over two weeks ago. Cody has lost half his vision in the right eye resulting in a loss of his peripheral vision on that side. Originally, Cody’s surgeon hoped that this treatment route would help lower the risk of losing sight.
But more testing showed that, “There are still some vessels associated with his primary visual cortex that we thought could be just normal vessels, but are confirmed, now that we can see more clearly, to be associated with the AVM. When we embolize those, I expect you’ll lose half your vision in both eyes.”
GETTING BACK TO A ‘NEW’ NORMAL WILL TAKE TIME
Cody has a second surgery most likely in September. Cody is looking at a future with the loss of sight in both eyes. There’s always hope, but that is the best medical opinion and the severity of that sight loss is unknown until after the surgery.
Cody needs help.
He can’t work—maybe not for months while adjusting to his disability. Unfortunately, he doesn’t know what he doesn’t know. Insurance may not cover everything. Bills are beginning to create pressure. Asking for help is not easy. He said, “I feel kind of ashamed to ask.”
This Nannie (what I’m called by the grands) is not ashamed to ask for him! We have a close-knit family and we’re doing our part to help. But this time we need to reach beyond family to help Cody get through this life-altering event.
Cody is no quitter and he’s staying positive despite his sight loss. He has faith and believes God guided his path back to Wausau, placed him in the exact apartment to meet a beautiful medical student with neurology experience,—then found the best ‘trouble shooting’ Neurosurgeon in the country to do what other surgeons didn’t want to do given the large size of Cody’s AVM.
Knowing Cody, he’ll be working again, maybe driving again, and living independently again—he just needs to get over the mountain he’s climbing right now!
What can we say? Thank you seems SO insignificant—but THANK YOU for both your prayers and the “get back on your feet” gift to Cody!
[Pic of AVM mass connected to Cody's vision] Last fall, our grandson Cody was diagnosed with an arteriovenous malformation (AVM ) in his brain. An AVM is an abnormal tangled mass of blood vessels connected to other arteries and veins in the brain that can disrupt normal blood flow and oxygen from circulating.
Brain AVM's are rare, occurring in less than 1% of the population. Most of the time it goes undiagnosed until it ruptures causing a severe hemorrhagic stroke that can lead to paralysis, loss of speech and sight, brain damage, or death. Those that are found before they rupture can require multiple risky complex procedures and years to complete.
AVMs are different from tumors as they are considered "eloquent" brain matter. That means Cody’s AVM mass is part of the vital blood path that flows throughout his brain. Most likely, Cody was born with the AVM, and it grew over the years.
Last December, the AVM reared its ugly head with a series of unusual headaches and vision changes. Cody’s girlfriend recognized something was seriously wrong and brought him into the ER. They quickly moved on getting a CT scan, which led to an MRI and MRA—discovering that not only did Cody have an AVM, but it was large!
NO PERFECT FIXES
Considering the size of the AVM, the best medical options left Cody with no perfect choices:
Option 1: Leave it alone. (Basically, a ticking time bomb.) Cody is young and the risk of hemorrhage increases over time.
Option 2: Multiple surgical procedures that incrementally choke off blood supply to the AVM mass. The surgeon will use an onyx material to cut off the blood flow. If successful, there’s a lower chance of a brain bleed that could cause a stroke.
Most likely half of Cody’s eyesight will be lost. Follow-up radiation after the surgical procedures may be needed if the AVM can’t be completely treated. Radiation can cause complications like cyst formation in his brain or damage to healthy tissue.
Option 3: Invasive surgery to completely remove the mass has the highest chance for bleeding in the brain and 100% loss of half eyesight in both eyes. It could cause memory loss as well.
CODY’S CHOICE AND LOSS OF SIGHT
Cody chose option two. The first phase of surgery was a little over two weeks ago. Cody has lost half his vision in the right eye resulting in a loss of his peripheral vision on that side. Originally, Cody’s surgeon hoped that this treatment route would help lower the risk of losing sight.
But more testing showed that, “There are still some vessels associated with his primary visual cortex that we thought could be just normal vessels, but are confirmed, now that we can see more clearly, to be associated with the AVM. When we embolize those, I expect you’ll lose half your vision in both eyes.”
GETTING BACK TO A ‘NEW’ NORMAL WILL TAKE TIME
Cody has a second surgery most likely in September. Cody is looking at a future with the loss of sight in both eyes. There’s always hope, but that is the best medical opinion and the severity of that sight loss is unknown until after the surgery.
Cody needs help.
He can’t work—maybe not for months while adjusting to his disability. Unfortunately, he doesn’t know what he doesn’t know. Insurance may not cover everything. Bills are beginning to create pressure. Asking for help is not easy. He said, “I feel kind of ashamed to ask.”
This Nannie (what I’m called by the grands) is not ashamed to ask for him! We have a close-knit family and we’re doing our part to help. But this time we need to reach beyond family to help Cody get through this life-altering event.
Cody is no quitter and he’s staying positive despite his sight loss. He has faith and believes God guided his path back to Wausau, placed him in the exact apartment to meet a beautiful medical student with neurology experience,—then found the best ‘trouble shooting’ Neurosurgeon in the country to do what other surgeons didn’t want to do given the large size of Cody’s AVM.
Knowing Cody, he’ll be working again, maybe driving again, and living independently again—he just needs to get over the mountain he’s climbing right now!
What can we say? Thank you seems SO insignificant—but THANK YOU for both your prayers and the “get back on your feet” gift to Cody!
Organizer and beneficiary
Pamela Rucinski
Organizer
Mosinee, WI
Cody Hartwig
Beneficiary