decision to have second surgery

[hope]

We have just received unfortunate news from our local doc, he said he has been researching the rare tumor in my baby with different doc that had experience. Their conclusion is we can no longer wait, second surgery is a must. Yet second one will need to be aggressive given the first removed very tiny. And outcome might not be good. I know sct in child is so rare, hope some of you can share. spinal deformity is a major issue in children sct surgery.
This is just so devastating. She hasn't even recovered from first, now need to consider going into second.
Yet, in god grace, her recovery has been satisfactory so far, her clinical sign is not in line with the MRI. So doc think we can sort of wait yet it's like having a bomb in her body.

[kansasmom]

Hope,
I do not have any experience to share with you on such a young child with a lipoma. These tumors are so individual, and so very life-changing. Please know that everyone on this forum has been changed in some way by a spinal cord tumor, in themselves or in a loved one. We are here to listen. There are others who's tumors started affecting them very young; I have read a few stories. My son still has a very larger tumor (he is 18 years old now - was diagnosed at 15 years), but he is doing much better than I, and the doctors, originally feared. It is good that your daughter's clinical signs are better than her MRI would lead you to expect. Children are remarkably resilient. Please keep us all updated.
Kansasmom

[hope]

Thanks kansasmom. Im sure you understand how I feel as a parent. I wish I could take this battle for her.

Read your son had two surgery too, how far apart ? I just want to know if second surgery is definitely going to be worst off since you have to cut open whatever you have healed. What did your doc inform you back then? our therapist also suspect whatever she has recovered now might be reversed in second surgery . It's especially hard for our case since she is just a baby, she cant tell you what is wrong and everything is learning stage for her.

If anyone had a second surgery before , be great to share any experience you might have. Does each surgery gets harder and more difficult to recover. And what questions I should ask my doc.

[kansasmom]

You are right Hope. It is so hard to watch our kids go through stuff. Fortunately for the kids they don't know any different.

My son did have two surgeries, but they were in different places (one was lumbar and the other was cranial). He did however require radiation treatment very soon after his lumbar surgery. His remaining tumor (they could not remove it all) was very aggressive and grew quickly after the first surgery - within 3 months it was back to its original size. I was extremely worried about how the radiation would affect his recovery from the first surgery, in a similar way to the worry I'd have had if they recommended a second surgery (a second surgery was considered). We waited three months before doing the radiation - which is what I'd read was the critical healing time for the surgery. The regrown tumor was making him physically worse, and he did get even worse during the radiation treatment. He is now physically better than he was before his first surgery. It took a couple of years.

I think a good surgeon balances whether your child will be better off with or without the surgery. They will recommend surgery when they think it is better for your child than not doing surgery. My only advice is to find a surgeon with the most experience and also one you trust. Ask questions until you feel as comfortable as you can be about the surgery.

Please keep us updated.

[hope]

We decided to monitor for now and not go ahead with the second surgery. She is still improving everyday, but she is a baby it's hard to tell the extend of deficits she has. One thing we noticed and really worry lately is, she always curl her toes really tight. Does anyone here have the same problem ?

We have just done another MRI and waiting for result. It's really difficult days being fear of the MRI coming , and fear of the result. And this process just repeat every few months.