- Joined
- Feb 12, 2011
- Messages
- 4,773
I haven't posted an update because we had been waiting on results of an MRI... today was the day. As luck would have it I'm traveling and so today has sucked and it's been a long day from about 2:30 p.m. on...when I received the phone call.
DD was diagnosed today, following last week's MRI, with a Tethered Spinal Cord and this was the cause of the Scoliosis and the pain she has been experiencing that Doctor #1 kept making excuses for and passing off as muscle weakness. Doctor #2 within 10 minutes of seeing her was writing an order for an MRI which Doctor #1 after two years and six months and with surgery planned on his schedule had still not ordered. Not sure why, but I plan to understand that in the coming days.
This means there will be no Scoliosis surgery as planned for 8/30 as we are now on an agressive hunt for a Neurosugeron who specializes in this type of surgery. There is no one local... so I'm turning to my PS friends. If you have suggestions toss them out, I'm headed to the first specialist that can get her on the schedule in the continental US. We are currently persuing Seattle, Akron, Cleveland, Orlando and Charlotte. This all happened late this afternoon so we will be on a full court press this week to get on someone's schedule.
My blessing..I have a daughter who is mentally strong as steel and braver than anyone I've ever met.. and I have great insurance and don't need a referral I can pick anyone I want to do the surgery. I just want to be moved to the front of the line. She's been in pain long enough.
Please everyone, don't settle in today's world for one opinion. Know the facts, ask tons of questions, take notes and seek to understand the things you don't! These doctors while they are healers they are also human and capable of making mistakes.
We are a praying family and we will be praying hard for the right doctor to be found and for this surgery to end her pain and start her journey toward a pain free life.
DD was diagnosed today, following last week's MRI, with a Tethered Spinal Cord and this was the cause of the Scoliosis and the pain she has been experiencing that Doctor #1 kept making excuses for and passing off as muscle weakness. Doctor #2 within 10 minutes of seeing her was writing an order for an MRI which Doctor #1 after two years and six months and with surgery planned on his schedule had still not ordered. Not sure why, but I plan to understand that in the coming days.
This means there will be no Scoliosis surgery as planned for 8/30 as we are now on an agressive hunt for a Neurosugeron who specializes in this type of surgery. There is no one local... so I'm turning to my PS friends. If you have suggestions toss them out, I'm headed to the first specialist that can get her on the schedule in the continental US. We are currently persuing Seattle, Akron, Cleveland, Orlando and Charlotte. This all happened late this afternoon so we will be on a full court press this week to get on someone's schedule.
My blessing..I have a daughter who is mentally strong as steel and braver than anyone I've ever met.. and I have great insurance and don't need a referral I can pick anyone I want to do the surgery. I just want to be moved to the front of the line. She's been in pain long enough.
Please everyone, don't settle in today's world for one opinion. Know the facts, ask tons of questions, take notes and seek to understand the things you don't! These doctors while they are healers they are also human and capable of making mistakes.
We are a praying family and we will be praying hard for the right doctor to be found and for this surgery to end her pain and start her journey toward a pain free life.