Help Chris Recover After 5th Brain Surgery
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Chris Ainsworth has dealt with a lot of health complications throughout his 51 years of life, starting from age 5 when he was diagnosed with Type 1 Diabetes. More recently, about 6 ½ years ago, he was in a car accident caused by what is believed to have been a seizure. Chris broke his back in the accident, and had to have surgery to repair it. Then, as a result of scans on his back, doctors found hundreds of kidney stones which had to be removed through multiple surgeries. Following his recovery, he began to have seizures again and he then developed chronic migraines. In February of 2018, at the Mayo Clinic in Phoenix, he was diagnosed with Labrune’s Syndrome, an extremely rare genetic disorder, with no known cure, that causes cysts to form in the brain, which can then cause seizures. Chris had his first of many brain surgeries in June 2018 to drain a cyst behind his left eye. He has had a total of five brain surgeries to drain and remove cysts in various parts of his brain. All of this resulted in his loss of vision back in 2018. Regardless of now being blind and everything else he has been through, he has maintained a positive attitude and a love for life. Chris always has a smile on his face and a hug to share!
The most recent surgery followed an incident on October 12, 2020 where it is believed he had another seizure and fell down the stairs in his apartment. Another cyst was removed in this surgery and his recovery has been slow but steady in the following weeks. He was in the ICU for almost three weeks, and has had other health complications since being admitted, including the need to be intubated and sedated, he is still fighting a blood infection, and is unable to move his left side. This has been extremely stressful and taxing not only on Chris, but also his family, especially his companion Tammy and son Austin. Austin is a freshman at Oklahoma State University studying mechanical engineering and living in Stillwater, OK.
Any assistance you are able to provide would be greatly appreciated to help with his expensive medical treatment and hospital stay, as well as having to break the lease to move to a first floor apartment. Thank you in advance and please keep Chris in your thoughts and prayers. God bless!
August 13, 2018: right side of Chris's head after his third brain surgery
August 13, 2018: Chris, ready for rehab, with his sisters Dana (left) and Lisa (right)
August 25, 2018: Chris (with sister, Dana, and mom, Mary) back in the hospital (from rehab), due to multiple seizures, to adjust medicine and monitor brain activity.
September 3, 2018: Chris learning to navigate with the cane.
March 6, 2020: Chris goofing off with his son Austin (left), nephews David (right) and Wesley (middle), and brother in law Robert (lower left).
October 21, 2020: Chris in the ICU after his seizure and fall down the stairs, on a ventilator and feeding tube, following his fifth brain surgery.
October 30, 2020: Chris just moved out of the ICU and is slowly recovering, but still has a long road ahead.
In Depth Story:
Chris Ainsworth, our brother, has been through a lot in his 51 years. At age 5, he was diagnosed with Type 1 Diabetes. We grew up watching our brother endure insulin shots, multiple times per day, insulin reactions-where his blood sugar got too low, and he would have a seizure-like response, causing multiple visits to the doctor and the ER. He has always persevered through the difficulty of being a diabetic, and things were going pretty well for him until about 6 ½ years ago. Chris was driving in south Denver on I-25, when suddenly, doctors believe, he had a seizure and crashed his car into the concrete median. This was not an insulin reaction as he had as a child, this was something new to Chris. The accident resulted in a broken back, a couple of weeks in the hospital, including a few days in the ICU, and a couple of weeks in a rehabilitation facility. As a result of all the scans they did on his back, they discovered he had hundreds of kidney stones. Subsequently, he had multiple surgeries to get them all out. That was a lot to go through, but our brother is a fighter and a hard worker, and again, he persevered. He got back to work as soon as he could. But then he had another seizure, and every time he had a seizure, the doctor wouldn’t let him drive for 3 months. This was difficult for him since he lived in Parker and worked in downtown Denver. He found a way to get to work a few days a week, and his job allowed him to work from home some. Eventually, things were going well again, until about three years ago. Chris started having migraines on a regular basis, and when he wasn’t having a migraine, he had a constant headache. He continued to work from home, but none of his medication or the other migraine remedies he tried were giving him much relief. It finally got so bad that he decided to go to the Mayo Clinic in Phoenix February 2018. The Mayo Clinic diagnosed Chris with Labrune Syndrome which is described as leukoencephalopathy, cerebral calcifications and cysts (LCC). According to the doctors, this is a very rare syndrome, and he is just the 10th person to be diagnosed. There is currently no cure. Chris has known for a few years that he had 3 calcium deposits in his brain, but until now, he and the doctors didn’t know why and didn’t know how much trouble they could cause. Well, the calcium deposits formed cysts that filled with fluid and were in turn putting pressure on his brain, which ultimately was the cause of his headaches and migraines. The neurosurgeon suggested a brain biopsy to drain the cyst behind his left eye. This should relieve the pressure and give the doctor more information about the cyst. Chris had that surgery on June 21, 2018. Everything went well and Chris felt some relief following the surgery. He spent several days in the ICU and then more in a regular hospital room. The biopsy results were normal, no cancer and no infection. All good news.
Fast forward 2 weeks. He went in for an MRI and unfortunately, the cyst had filled up with fluid again and Chris had to now have major brain surgery. They opened up the entire left side of his skull in order to fully remove the calcium deposit and the cyst and shave down the interior of his skull to make room in case this happened again. The surgery was a success and Chris spent another week in the ICU and more than a week in the hospital recovering. The doctor then told him that in a couple of weeks, he’d have to perform the same surgery on the right side of his head to remove the calcium deposit and cyst on that side. He made it home for a few days and then had his third brain surgery. This one was just like the last one and everything went well at first. But this was a lot of trauma for Chris’ brain to go through in such a short amount of time. He had many setbacks and had to have PT and OT as well as speech therapy. He also began to lose his eyesight gradually during this time and then lost his vision altogether. But as Chris has always done, he persevered and eventually made it to the rehab facility. He was making great progress and had a really positive attitude, as always, until he had yet another setback. I was visiting him one Sunday afternoon when he suddenly had a seizure. He ended up back in the ICU for an entire week so they could find the right combination of anti-seizure meds to stop his seizures completely. He was really drugged up the entire time he was there. It was hard to see him like that. Over the next couple of weeks, however, he did make it back into a regular hospital room, and eventually back to rehab again. Finally, Chris came home from his almost 3 month hospital stay! We were all over-joyed! But his story doesn’t end there.
December 31, 2018- 4th brain surgery to clean up an infection where the plates were holding his skull together, and to remove them… More headaches and migraines.
February 14, 2019- Chris was home alone and had a seizure. (He hadn’t had one for a while). Luckily, Tammy arrived home in time to call 911, because something didn’t seem right. And it wasn’t. It turns out that Chris had also had a heart attack. They took him back to surgery and did an angiogram. They were able to find the blood clot in his artery and suction it out. Chris spent more time in the ICU, but slowly made steady progress in his healing.
On October 12, 2020, another unfortunate incident happened to Chris. It is believed that he had a seizure while at home alone and fell down the stairs in his apartment. His nurse found him and heard him at the bottom of the stairs. He was rushed to the hospital and spent a few days in the ICU before he had to have another brain surgery to remove the cyst that the doctors believed caused the seizure. Since then, he has been recovering slowly but had to be intubated on a ventilator and sedated while recovering. He spent 19 days in the ICU and thankfully, just moved to a regular room today. He is making slow, steady progress, but has also had to fight a blood infection and other complications. He is having trouble moving the left side of his body, and is not yet able to speak, but is making slow progress in both of those regards. Because of COVID, only one person is allowed to visit him each day, so his companion Tammy has been spending the allowed 14 hours each day with him, and his sisters, son, and mother have also taken turns on some days.
We would like to ask for your continued prayers for our brother, Chris, and for Tammy and their son, Austin. This has been tremendously stressful and traumatic for their family and the financial burden now looms in the wake of all Chris has been through and continues to overcome. Dana Casey, his sister, will run this site and manage any donated funds.
If you’d like to help Chris with the many medical bills that have accumulated since this latest incident, he would be so grateful, as would we!
Thank you for your generosity and God bless you & your family.
Dana Casey & Lisa Ainsworth
The most recent surgery followed an incident on October 12, 2020 where it is believed he had another seizure and fell down the stairs in his apartment. Another cyst was removed in this surgery and his recovery has been slow but steady in the following weeks. He was in the ICU for almost three weeks, and has had other health complications since being admitted, including the need to be intubated and sedated, he is still fighting a blood infection, and is unable to move his left side. This has been extremely stressful and taxing not only on Chris, but also his family, especially his companion Tammy and son Austin. Austin is a freshman at Oklahoma State University studying mechanical engineering and living in Stillwater, OK.
Any assistance you are able to provide would be greatly appreciated to help with his expensive medical treatment and hospital stay, as well as having to break the lease to move to a first floor apartment. Thank you in advance and please keep Chris in your thoughts and prayers. God bless!
August 13, 2018: right side of Chris's head after his third brain surgeryAugust 13, 2018: Chris, ready for rehab, with his sisters Dana (left) and Lisa (right)August 25, 2018: Chris (with sister, Dana, and mom, Mary) back in the hospital (from rehab), due to multiple seizures, to adjust medicine and monitor brain activity.September 3, 2018: Chris learning to navigate with the cane.March 6, 2020: Chris goofing off with his son Austin (left), nephews David (right) and Wesley (middle), and brother in law Robert (lower left).October 21, 2020: Chris in the ICU after his seizure and fall down the stairs, on a ventilator and feeding tube, following his fifth brain surgery.October 30, 2020: Chris just moved out of the ICU and is slowly recovering, but still has a long road ahead.In Depth Story:
Chris Ainsworth, our brother, has been through a lot in his 51 years. At age 5, he was diagnosed with Type 1 Diabetes. We grew up watching our brother endure insulin shots, multiple times per day, insulin reactions-where his blood sugar got too low, and he would have a seizure-like response, causing multiple visits to the doctor and the ER. He has always persevered through the difficulty of being a diabetic, and things were going pretty well for him until about 6 ½ years ago. Chris was driving in south Denver on I-25, when suddenly, doctors believe, he had a seizure and crashed his car into the concrete median. This was not an insulin reaction as he had as a child, this was something new to Chris. The accident resulted in a broken back, a couple of weeks in the hospital, including a few days in the ICU, and a couple of weeks in a rehabilitation facility. As a result of all the scans they did on his back, they discovered he had hundreds of kidney stones. Subsequently, he had multiple surgeries to get them all out. That was a lot to go through, but our brother is a fighter and a hard worker, and again, he persevered. He got back to work as soon as he could. But then he had another seizure, and every time he had a seizure, the doctor wouldn’t let him drive for 3 months. This was difficult for him since he lived in Parker and worked in downtown Denver. He found a way to get to work a few days a week, and his job allowed him to work from home some. Eventually, things were going well again, until about three years ago. Chris started having migraines on a regular basis, and when he wasn’t having a migraine, he had a constant headache. He continued to work from home, but none of his medication or the other migraine remedies he tried were giving him much relief. It finally got so bad that he decided to go to the Mayo Clinic in Phoenix February 2018. The Mayo Clinic diagnosed Chris with Labrune Syndrome which is described as leukoencephalopathy, cerebral calcifications and cysts (LCC). According to the doctors, this is a very rare syndrome, and he is just the 10th person to be diagnosed. There is currently no cure. Chris has known for a few years that he had 3 calcium deposits in his brain, but until now, he and the doctors didn’t know why and didn’t know how much trouble they could cause. Well, the calcium deposits formed cysts that filled with fluid and were in turn putting pressure on his brain, which ultimately was the cause of his headaches and migraines. The neurosurgeon suggested a brain biopsy to drain the cyst behind his left eye. This should relieve the pressure and give the doctor more information about the cyst. Chris had that surgery on June 21, 2018. Everything went well and Chris felt some relief following the surgery. He spent several days in the ICU and then more in a regular hospital room. The biopsy results were normal, no cancer and no infection. All good news.
Fast forward 2 weeks. He went in for an MRI and unfortunately, the cyst had filled up with fluid again and Chris had to now have major brain surgery. They opened up the entire left side of his skull in order to fully remove the calcium deposit and the cyst and shave down the interior of his skull to make room in case this happened again. The surgery was a success and Chris spent another week in the ICU and more than a week in the hospital recovering. The doctor then told him that in a couple of weeks, he’d have to perform the same surgery on the right side of his head to remove the calcium deposit and cyst on that side. He made it home for a few days and then had his third brain surgery. This one was just like the last one and everything went well at first. But this was a lot of trauma for Chris’ brain to go through in such a short amount of time. He had many setbacks and had to have PT and OT as well as speech therapy. He also began to lose his eyesight gradually during this time and then lost his vision altogether. But as Chris has always done, he persevered and eventually made it to the rehab facility. He was making great progress and had a really positive attitude, as always, until he had yet another setback. I was visiting him one Sunday afternoon when he suddenly had a seizure. He ended up back in the ICU for an entire week so they could find the right combination of anti-seizure meds to stop his seizures completely. He was really drugged up the entire time he was there. It was hard to see him like that. Over the next couple of weeks, however, he did make it back into a regular hospital room, and eventually back to rehab again. Finally, Chris came home from his almost 3 month hospital stay! We were all over-joyed! But his story doesn’t end there.
December 31, 2018- 4th brain surgery to clean up an infection where the plates were holding his skull together, and to remove them… More headaches and migraines.
February 14, 2019- Chris was home alone and had a seizure. (He hadn’t had one for a while). Luckily, Tammy arrived home in time to call 911, because something didn’t seem right. And it wasn’t. It turns out that Chris had also had a heart attack. They took him back to surgery and did an angiogram. They were able to find the blood clot in his artery and suction it out. Chris spent more time in the ICU, but slowly made steady progress in his healing.
On October 12, 2020, another unfortunate incident happened to Chris. It is believed that he had a seizure while at home alone and fell down the stairs in his apartment. His nurse found him and heard him at the bottom of the stairs. He was rushed to the hospital and spent a few days in the ICU before he had to have another brain surgery to remove the cyst that the doctors believed caused the seizure. Since then, he has been recovering slowly but had to be intubated on a ventilator and sedated while recovering. He spent 19 days in the ICU and thankfully, just moved to a regular room today. He is making slow, steady progress, but has also had to fight a blood infection and other complications. He is having trouble moving the left side of his body, and is not yet able to speak, but is making slow progress in both of those regards. Because of COVID, only one person is allowed to visit him each day, so his companion Tammy has been spending the allowed 14 hours each day with him, and his sisters, son, and mother have also taken turns on some days.
We would like to ask for your continued prayers for our brother, Chris, and for Tammy and their son, Austin. This has been tremendously stressful and traumatic for their family and the financial burden now looms in the wake of all Chris has been through and continues to overcome. Dana Casey, his sister, will run this site and manage any donated funds.
If you’d like to help Chris with the many medical bills that have accumulated since this latest incident, he would be so grateful, as would we!
Thank you for your generosity and God bless you & your family.
Dana Casey & Lisa Ainsworth
Organizer
Dana Casey
Organizer
Fort Collins, CO