Hi again,
It's been a couple of months since I've posted anything. I guess I thought that after the second surgery, when all the instrumentation was removed from my daughter (Kate) that I wouldn't need the support I have always gotten here.
I was wrong.
The lesson I am learning is that scoliosis never "gets fixed" like a cavity or broken bone. It is a life-long condition that changes over time. Sometimes for the good, sometimes not.
As some of you might remember, Kate had revision surgery July 15th. They removed 2 rods and all the screws and "stabilizers" (?). I asked her surgeon if he would save them for us and he did. I have to admit, my stomach turned when I saw them for the 1st time. I tried to attach photos of everything, but all the files were too big to attach. If anyone would like to see them, I can email them privately, I guess. I don't know what "brand" they were (Harrington, etc.) but I do know they look awfully painful.
They were removed because Kate has had ongoing pain sonce before her 1st surgery in November 2003. We (Kate, Kate's surgeon and myself) have kept a watchful eye on her condition, but it seemed like the pain just kept increasing. Her surgeon decided to remove the hardware and at the same time "bulk up" one of the fusions that looked suspicious. He was hoping that would eliminate her pain.
As everyone here said, the actual surgery was much easier than the 1st one. If you can really say anything like this is easy. Kate was released from the hospital quicker and it seemed like her recovery went quicker. But the pain never quite went away. At first we attributed it to post surgical pain, but more and more it seems like we are back to step one. She is still in pain, her life is altered because of it and no one knows what is going on.
We have an appointment with a pain management specialist on 9/29 (can you believe it takes more than 4 weeks to get into a pain management clinic?) Then she has an appointment in December to see another surgeon. Her current surgeon thinks it still might be post operative pain and that we should give it 6 months after the surgery to subside.
In the meantime, she is in daily pain - the kind that wakes her up at night and makes her cry out of pain and frustration. She has taken hydrocodone 7.5(Lortab) since before the 1st surgery (that is more than 2 years), and it makes the pain bearable but makes her so sick to her stomach now that alot of times she just decides it's not worth it. It breaks my heart and I feel so useless. She started college a month ago, so she isn't even here for me to help her even a little.
I guess I am just venting and hoping for ideas from anyone about what to do next.
Sorry this is so long and rambling.
Kathy (Kate's Mom)
It's been a couple of months since I've posted anything. I guess I thought that after the second surgery, when all the instrumentation was removed from my daughter (Kate) that I wouldn't need the support I have always gotten here.
I was wrong.
The lesson I am learning is that scoliosis never "gets fixed" like a cavity or broken bone. It is a life-long condition that changes over time. Sometimes for the good, sometimes not.
As some of you might remember, Kate had revision surgery July 15th. They removed 2 rods and all the screws and "stabilizers" (?). I asked her surgeon if he would save them for us and he did. I have to admit, my stomach turned when I saw them for the 1st time. I tried to attach photos of everything, but all the files were too big to attach. If anyone would like to see them, I can email them privately, I guess. I don't know what "brand" they were (Harrington, etc.) but I do know they look awfully painful.
They were removed because Kate has had ongoing pain sonce before her 1st surgery in November 2003. We (Kate, Kate's surgeon and myself) have kept a watchful eye on her condition, but it seemed like the pain just kept increasing. Her surgeon decided to remove the hardware and at the same time "bulk up" one of the fusions that looked suspicious. He was hoping that would eliminate her pain.
As everyone here said, the actual surgery was much easier than the 1st one. If you can really say anything like this is easy. Kate was released from the hospital quicker and it seemed like her recovery went quicker. But the pain never quite went away. At first we attributed it to post surgical pain, but more and more it seems like we are back to step one. She is still in pain, her life is altered because of it and no one knows what is going on.
We have an appointment with a pain management specialist on 9/29 (can you believe it takes more than 4 weeks to get into a pain management clinic?) Then she has an appointment in December to see another surgeon. Her current surgeon thinks it still might be post operative pain and that we should give it 6 months after the surgery to subside.
In the meantime, she is in daily pain - the kind that wakes her up at night and makes her cry out of pain and frustration. She has taken hydrocodone 7.5(Lortab) since before the 1st surgery (that is more than 2 years), and it makes the pain bearable but makes her so sick to her stomach now that alot of times she just decides it's not worth it. It breaks my heart and I feel so useless. She started college a month ago, so she isn't even here for me to help her even a little.
I guess I am just venting and hoping for ideas from anyone about what to do next.
Sorry this is so long and rambling.
Kathy (Kate's Mom)
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