Post by cody on Feb 24, 2015 8:35:10 GMT -5
I know our horse community prayers can be powerful and my daughter is in need of them. I will share more when I know what we are up against but we meet with the specialist this afternoon. Please pray we can do the simplest, least invasive fix and with great results! It's also her 22nd birthday ... What a crappy birthday for her 
at 22 you shouldn't be meeting with specialists to see how your life will change..... Please pray for her!
UPDATE
Not great news like they made a mistake and she's perfectly healthy ... but good news considering her situation. She has a mass/lesion on her brain. They believe it's been there since birth and her brain just grew around it. The MRI scan suggests that the lesion has had a small bleed which is likely the reason her seizures started. Because she has a lesion on her brain which causes seizures, they have to give her the label of partial epileptic. The partial label comes in because she doesn't lose consciousness with her seizures and is aware during them. She will be on anti seizure medicine for life because of this. At this point, surgery won't be considered unless the seizures aren't able to be controlled with medicine. The medicine is newer to the market but usually well tolerated and has minimal side effects. Mikayla has a EEG scheduled and another follow up with her neurologist in a couple of weeks. We found her to be well informed, thorough, very nice, and more than willing to answer our 101 questions. She is also helping us into Mayo Clinic through the back door for a meeting with a leading neuro surgeon next month to make sure all of our bases are covered.
Mikayla has a few restrictions on her life now but for the most part, can live it just like she has been as long as this anti seizure medicine works. She sure is mad at the world today, asking "why me?" It's gonna be a big change and she's only 22. I told her it's okay to be mad at the world but not to forget to count her blessings when she is done.
Thanks you for the well wishes!
Update 3
Well it wasn't the news we wanted to hear but Mikayla's neuro team at Mayo Clinic thinks we should move ahead with the plan to have surgery next week. The meds are not working to keep the seizures at bay, in fact she had one today on the way home. She is already on a high dose of seizure meds that's been raised twice and is having side effects that are hard to handle. The neurosurgeon, Dr. Lanzino, explained doing surgery sooner than later is better because the presence of fresh blood makes the surgery easier and with less risks. They will do another MRI right before the surgery to get updated information. The only way the surgery will not happen next Thursday is if the MRI shows too much blood has been adsorbed, making the risk higher for complications. The neurologist and neurosurgeon would try to medically handle her seizures until she had another small bleed in the future.
Mikayla will be in the hospital 3-5 days after surgery and off from work 2-4 weeks depending on how she feels afterwards. Her neuro team are hopeful there will be no complications and she will heal faster because she is young and otherwise healthy. The incision will be small (no hair shaved, yay) and they will be able to go in through a fold in the brain. Mikayla would stay on high doses of her anti seizure meds for awhile following the surgery, reducing them a step in a few months. She might even be able to get off her anti seizure medicine in a couple of years. We feel confident in our neurology team at Mayo ... Her neurosurgeon has 25 years experience and cavernous malformations are his speciality. He is known all over the world for his work in his field.....we can't ask to be in better hands. How fortunate we are to live so close to the # 1 clinic in neurology in the country.......BUT.....it's still scary. Mikayla is doing okay right now....she just wants this over with and her old life back.
Thank you for all the well wishes and prayers....keep them up please!!
Clover
at 22 you shouldn't be meeting with specialists to see how your life will change..... Please pray for her!UPDATE
Not great news like they made a mistake and she's perfectly healthy ... but good news considering her situation. She has a mass/lesion on her brain. They believe it's been there since birth and her brain just grew around it. The MRI scan suggests that the lesion has had a small bleed which is likely the reason her seizures started. Because she has a lesion on her brain which causes seizures, they have to give her the label of partial epileptic. The partial label comes in because she doesn't lose consciousness with her seizures and is aware during them. She will be on anti seizure medicine for life because of this. At this point, surgery won't be considered unless the seizures aren't able to be controlled with medicine. The medicine is newer to the market but usually well tolerated and has minimal side effects. Mikayla has a EEG scheduled and another follow up with her neurologist in a couple of weeks. We found her to be well informed, thorough, very nice, and more than willing to answer our 101 questions. She is also helping us into Mayo Clinic through the back door for a meeting with a leading neuro surgeon next month to make sure all of our bases are covered.
Mikayla has a few restrictions on her life now but for the most part, can live it just like she has been as long as this anti seizure medicine works. She sure is mad at the world today, asking "why me?" It's gonna be a big change and she's only 22. I told her it's okay to be mad at the world but not to forget to count her blessings when she is done.
Thanks you for the well wishes!
Update 3
Well it wasn't the news we wanted to hear but Mikayla's neuro team at Mayo Clinic thinks we should move ahead with the plan to have surgery next week. The meds are not working to keep the seizures at bay, in fact she had one today on the way home. She is already on a high dose of seizure meds that's been raised twice and is having side effects that are hard to handle. The neurosurgeon, Dr. Lanzino, explained doing surgery sooner than later is better because the presence of fresh blood makes the surgery easier and with less risks. They will do another MRI right before the surgery to get updated information. The only way the surgery will not happen next Thursday is if the MRI shows too much blood has been adsorbed, making the risk higher for complications. The neurologist and neurosurgeon would try to medically handle her seizures until she had another small bleed in the future.
Mikayla will be in the hospital 3-5 days after surgery and off from work 2-4 weeks depending on how she feels afterwards. Her neuro team are hopeful there will be no complications and she will heal faster because she is young and otherwise healthy. The incision will be small (no hair shaved, yay) and they will be able to go in through a fold in the brain. Mikayla would stay on high doses of her anti seizure meds for awhile following the surgery, reducing them a step in a few months. She might even be able to get off her anti seizure medicine in a couple of years. We feel confident in our neurology team at Mayo ... Her neurosurgeon has 25 years experience and cavernous malformations are his speciality. He is known all over the world for his work in his field.....we can't ask to be in better hands. How fortunate we are to live so close to the # 1 clinic in neurology in the country.......BUT.....it's still scary. Mikayla is doing okay right now....she just wants this over with and her old life back.
Thank you for all the well wishes and prayers....keep them up please!!
Clover
