Katya was diagnosed with a Chiari Malformation in Feb 2013. After 2 brain surgeries, she is still fighting complications. Help support her fight!
Katya Ebodaghe, 34 yrs old wife to Cedric and mother of three beautiful children. Maddie 11, and recently diagnosed with cervical spinal stenosis, very rare for a chid her age. She does not need surgery at this time but will be seeing a pediatric rheumatologist to see about underlying disease. Aden 8, was diagnosed with Autism at 27 months and was born with a single kidney. He is doing wonderful, has gone above and beyond all expectations of doctors and therapists. And little Camdyn 5, she's a little firecracker, completely healthy and a bundle of energy.
Katya has struggled with various health issues throughout her life but they became more serious in 2009 when she found a large lump in her throat. She was diagnosed with papillary thyroid cancer and had surgery in Feb 2010. After total thyroidectomy and tumor removal, Katya was discharged from hospital. Less than 24 hours later, Cedric had rushed her back to the hospital and she was struggling to breath in the ICU. She was suffering from a rare complication, hypoparathyroidism. It occurs to only 1% of patients, sometimes temporary and sometimes permanent. One of her four parathyroids was removed during surgery and the remaining three were damaged. The three damaged parathyroids were not producing enough hormone and unable to maintain her blood calcium levels (hypocalcemia). She was in the hospital an additional 9 days until her calcium levels stayed high enough without IV calcium, just calcium supplements so that she could be discharged home. There is currently no hormone replacement for hypoparathyroidism, clinical trials are still under way. Her condition is unfortunately permanent.
Since her thyroid was completely removed it automatically makes her have hypothyroidism and the damaged parathyroids caused acquired hypoparathyroidism with secondary hypocalcemia and vitamin D deficiency. Then in Dec 2011 she had a hysterectomy due to severe adenomyosis thought to be aggravating her hypoparathyroidism. During surgery her bladder was torn and had to be repaired. In the spring of 2012 she started having various symptoms, severe fatigue, joint pain, muscle weakness, headaches, the list goes on. For over a year she was bounced around from doctor to doctor trying to find what was causing them as the list grew and symptoms worsened and even caused falls and trips to the emergency room. Finally they did find the Chiairi Malformation Type 1. One neurologist said symptoms weren't from Chiari, one neurosurgeon said symptoms were from Chiari but surgery wouldn't help. Then a good friend pointed her to Georgetown University Hospital and her neurosurgeon and we had a surgery date. She had decompression surgery on May 24, 2013. The decompression consists of a suboccipital craniotomy (taking a small piece of the back of her skull out), a duraplasty (removing a small piece of her dura and replacing with synthetic dura), and a C1 laminectomy (removing a section of her C1 vertabrae).
Surgery went well, she had some trouble with anesthesia and waking up and with nausea and vomiting but she was in good spirits and was on the road to recovery. One day after being home from the hospital she has vomiting and pain so intense that she's rushed to the local hospital (Georgetown is almost 2 hours away). They don't know what to do with her so I (Katya's mom) told them to call Georgetown. Her neurosurgeon wants her transported back up there. Back to Georgetown she goes for another two days to make sure she is ok before she can come back home for the rest of recovery. At two weeks post op we were extremely hopeful, still trouble with nausea and vomiting but about 50% of Katya's pre-surgery Chiari symptoms were gone! Amazing! She still had pain from surgery and it was hard to remember to take it easy. Then at 5 1/2 weeks she noticed a drip from her incision. At first it was not a lot, at when she had been at her local ER they did a CT scan and said she had some extra fluid and that is expected after brain surgery. Well, it got worse and worse and then the pressure came, like her head would explode. She called her neurosurgeon and sent pictures of her leaking incision. They said come to Georgetown ER immediately.
On July 11 she was admitted through the ER to the hospital with a CSF leak and a pseudomeningocele. They wouldn't know the cause until surgery the next day. She had her second brain surgery at 3pm on July 12, 2013. They went in through the same incision, cleaned out all the CSF, saw a small hole in her dura patch, repaired it, and sewed her back up. Once again trouble waking up and trouble with nausea and vomiting but our Katya laughing and high spirits. Then 2 days later while I was with her in her hospital room for the first time ever I thought I would lose my daughter. I thought she would go before me, something you never want as a parent. She spiked a very high fever and was barely conscious. Nurses were running in with ice packs and cooling blankets. She couldn't stop vomiting. I couldn't do anything but hold her hand, put a cold washcloth on her head, cry, and pray. Doctors came and tests were run. They didn't wait, the fever was burning her up. Strong antibiotics were started and we waited. All this time her husband is at home with their children, trying to pretend like everything is ok. Finally the labs come back, she has acute bacterial meningitis. She would need to be in the hospital for several days and then she will need to have home health nurses teach us how to administer the antibiotics to her through her PICC line at home after she's discharged. Cedric and I learned and gave her antibiotics every morning and night exactly 12 hours apart every day through the line in her arm.
August 1, 2013 after a very long summer of hospitals and antibiotics, Katya's PICC line was finally removed after lab results came back clear. You would hope this is the end of her story but unfortunately it is not. Katya noticed some issues with her vision after her first surgery. Her neurosurgeon referred her to a colleague at Georgetown, a neurologist specializing in opthamology. By the time she saw him she had already had the second surgery and the meningitis. During the exam he saw inflammation behind her eyes. He diagnosed her with papilledema with increased intracranial pressure. This is causing her to lose part of her vision and to have crushing headaches from the pressure of the extra fluid. At first it was blamed on the meningitis but just recently the doctors changed it to being due to a condition called pseudotumor cerebri. Her brain is acting as if there is a brain tumor there when in fact there is none. So many terms, conditions, and diseases, it's hard to keep up. She is on medication trying to control the inflammation and the pressure. If it does not work she will have to have a shunt put in her brain. Yet another surgery. Katya is as strong as they come. She has shown her children that strength and bravery. Thank you to all her friends and supporters who have helped along the way! We couldn't have done it without you! All of you are truly a blessing! Thank you.
Katya Ebodaghe, 34 yrs old wife to Cedric and mother of three beautiful children. Maddie 11, and recently diagnosed with cervical spinal stenosis, very rare for a chid her age. She does not need surgery at this time but will be seeing a pediatric rheumatologist to see about underlying disease. Aden 8, was diagnosed with Autism at 27 months and was born with a single kidney. He is doing wonderful, has gone above and beyond all expectations of doctors and therapists. And little Camdyn 5, she's a little firecracker, completely healthy and a bundle of energy.
Katya has struggled with various health issues throughout her life but they became more serious in 2009 when she found a large lump in her throat. She was diagnosed with papillary thyroid cancer and had surgery in Feb 2010. After total thyroidectomy and tumor removal, Katya was discharged from hospital. Less than 24 hours later, Cedric had rushed her back to the hospital and she was struggling to breath in the ICU. She was suffering from a rare complication, hypoparathyroidism. It occurs to only 1% of patients, sometimes temporary and sometimes permanent. One of her four parathyroids was removed during surgery and the remaining three were damaged. The three damaged parathyroids were not producing enough hormone and unable to maintain her blood calcium levels (hypocalcemia). She was in the hospital an additional 9 days until her calcium levels stayed high enough without IV calcium, just calcium supplements so that she could be discharged home. There is currently no hormone replacement for hypoparathyroidism, clinical trials are still under way. Her condition is unfortunately permanent.
Since her thyroid was completely removed it automatically makes her have hypothyroidism and the damaged parathyroids caused acquired hypoparathyroidism with secondary hypocalcemia and vitamin D deficiency. Then in Dec 2011 she had a hysterectomy due to severe adenomyosis thought to be aggravating her hypoparathyroidism. During surgery her bladder was torn and had to be repaired. In the spring of 2012 she started having various symptoms, severe fatigue, joint pain, muscle weakness, headaches, the list goes on. For over a year she was bounced around from doctor to doctor trying to find what was causing them as the list grew and symptoms worsened and even caused falls and trips to the emergency room. Finally they did find the Chiairi Malformation Type 1. One neurologist said symptoms weren't from Chiari, one neurosurgeon said symptoms were from Chiari but surgery wouldn't help. Then a good friend pointed her to Georgetown University Hospital and her neurosurgeon and we had a surgery date. She had decompression surgery on May 24, 2013. The decompression consists of a suboccipital craniotomy (taking a small piece of the back of her skull out), a duraplasty (removing a small piece of her dura and replacing with synthetic dura), and a C1 laminectomy (removing a section of her C1 vertabrae).
Surgery went well, she had some trouble with anesthesia and waking up and with nausea and vomiting but she was in good spirits and was on the road to recovery. One day after being home from the hospital she has vomiting and pain so intense that she's rushed to the local hospital (Georgetown is almost 2 hours away). They don't know what to do with her so I (Katya's mom) told them to call Georgetown. Her neurosurgeon wants her transported back up there. Back to Georgetown she goes for another two days to make sure she is ok before she can come back home for the rest of recovery. At two weeks post op we were extremely hopeful, still trouble with nausea and vomiting but about 50% of Katya's pre-surgery Chiari symptoms were gone! Amazing! She still had pain from surgery and it was hard to remember to take it easy. Then at 5 1/2 weeks she noticed a drip from her incision. At first it was not a lot, at when she had been at her local ER they did a CT scan and said she had some extra fluid and that is expected after brain surgery. Well, it got worse and worse and then the pressure came, like her head would explode. She called her neurosurgeon and sent pictures of her leaking incision. They said come to Georgetown ER immediately.
On July 11 she was admitted through the ER to the hospital with a CSF leak and a pseudomeningocele. They wouldn't know the cause until surgery the next day. She had her second brain surgery at 3pm on July 12, 2013. They went in through the same incision, cleaned out all the CSF, saw a small hole in her dura patch, repaired it, and sewed her back up. Once again trouble waking up and trouble with nausea and vomiting but our Katya laughing and high spirits. Then 2 days later while I was with her in her hospital room for the first time ever I thought I would lose my daughter. I thought she would go before me, something you never want as a parent. She spiked a very high fever and was barely conscious. Nurses were running in with ice packs and cooling blankets. She couldn't stop vomiting. I couldn't do anything but hold her hand, put a cold washcloth on her head, cry, and pray. Doctors came and tests were run. They didn't wait, the fever was burning her up. Strong antibiotics were started and we waited. All this time her husband is at home with their children, trying to pretend like everything is ok. Finally the labs come back, she has acute bacterial meningitis. She would need to be in the hospital for several days and then she will need to have home health nurses teach us how to administer the antibiotics to her through her PICC line at home after she's discharged. Cedric and I learned and gave her antibiotics every morning and night exactly 12 hours apart every day through the line in her arm.
August 1, 2013 after a very long summer of hospitals and antibiotics, Katya's PICC line was finally removed after lab results came back clear. You would hope this is the end of her story but unfortunately it is not. Katya noticed some issues with her vision after her first surgery. Her neurosurgeon referred her to a colleague at Georgetown, a neurologist specializing in opthamology. By the time she saw him she had already had the second surgery and the meningitis. During the exam he saw inflammation behind her eyes. He diagnosed her with papilledema with increased intracranial pressure. This is causing her to lose part of her vision and to have crushing headaches from the pressure of the extra fluid. At first it was blamed on the meningitis but just recently the doctors changed it to being due to a condition called pseudotumor cerebri. Her brain is acting as if there is a brain tumor there when in fact there is none. So many terms, conditions, and diseases, it's hard to keep up. She is on medication trying to control the inflammation and the pressure. If it does not work she will have to have a shunt put in her brain. Yet another surgery. Katya is as strong as they come. She has shown her children that strength and bravery. Thank you to all her friends and supporters who have helped along the way! We couldn't have done it without you! All of you are truly a blessing! Thank you.