Anterior Posterior spinal surgery 20 month old

[greggo72]

Hi my daughter Ariana is having anterior post spinal surgery on March 28th at NYU medical center with Dr. Errico (chief) and Dr. Van Bosse (pediatric). She is 20 months old and has congenital kyphosis with hemivertebrae and bar T13/T12-L2 (she has 2 extra vertebrae) She has one failed post spinal fusion that was performed when she was 13 months old... Her instrumentation has failed and has since broken (a wire). Can any one tell me what to expect? I know that she will be in the ICU, possibly on a respirator and will have chest tubes but I want to hear about recovery time and pain management. Thanks alot Cindy and Gregg

[SarahH]

I am sorry but I dont know the answers to your questions, but I want to offer you and your family many prayers. You will all be in my thoughts!

[greggo72]

It is a little frustrating because we don't have a lot of information on the procedure, except what the doctors tell us, and it seems to us that this procedure is done in adults alot not small children. When my daughter had her first procedure a post. spinal fusion we expected the worst and it was actually okay. Ariana seemed to have a high threshold of pain and wasn't too uncomfortable, in fact when our doctor came to see us on day 2 he said he went to the picu and was suprised that we weren't there!! So i wonder how other children reacted in a similar situation but i guess maybe it is too rare of a procedure in such a young child. My doctor has only done 12 in his career.. Cindy

[Carmell]

Hi Cindy and Gregg,

I wrote an entire novel to you the other day, but my computer *burped* and I didn't have time to re-write. Sorry this is late in getting back to you.

My son, Braydon, had anterior/posterior fusion only surgery (no instrumentation) done when he was 11 months old. He is fused from T5-L1. His fusion was a success, which means that part of his spine is very rigid and doesn't grow vertically (it does grow circumferentially, in thickness).

The anterior part of the surgery is more extensive than posterior surgery because they have to manipulate and move the internal organs in order to get to the front part of the spine. Hopefully, since Ariana's surgery will be lower in the spine, there won't be too much disruption of the internal organs. She may not even need a chest tube if they stay away from the diaphram and lungs. When Braydon had his fusion, they had to deflate one lung, which meant he had a chest tube for several days to make sure he didn't develop a pneumo-thorax (collapsed lung). This may be something to ask the surgeon about (the possibility of a chest tube).

Braydon's biggest recovery issue was (and still is) muscle spasms that are very painful. Make sure you talk to the pain services team at the hospital BEFORE the surgery so you know what to expect after the surgery. Keep a notepad with you and write down what meds they give her, and what time. This way she won't go too long without medication. This is especially important in the first few days following surgery. This pain management plan is probably one of the most important ways to prepare.

I'm assuming they will use some small instrumentation to hold the repair in place. It sounds like only a small amount of the spine will be fused and instrumented (probably 3 vertebrae - T12 to L2). You may want to ask if they will decide what kind of instrumentation they will need to use when they are actually doing the surgery. They may not know for sure yet.

Do you know if they plan to cast or brace her for a while during her recovery? I know several children who had a similar surgery and wore either a cast or brace for a few weeks or months to help hold the spine in place while the fusion became solid. With her previous failed fusion, you may want to consider asking about this. Especially since some of the lumbar spine will be involved in the fusion. The majority of your body's movement comes in the lumbar spine, so its kinda hard to convince a toddler they need to be inactive for a time while their spine heals.

When you first see her in the PICU, she will have MANY tubes and things going in and out of her... this is normal. She may even have an NG tube coming out of her nose - this helps keep her stomach empty to keep her from being so nauseated. With her previous surgery, was she prone to being nauseas? If so, tell them before the surgery. They can give her meds to keep the nausea to a minimum. When Braydon was 6 and had his rod implant surgery, he was on a ventilator for 48 hours after surgery. Ariana's body will need time to heal before having to breathe completely on her own... so a respirator will be a good thing, in the very beginning. Try not to worry too much... I have some pics of Braydon's post-op recovery, if you are interested... if not, no problem.

http://pages.ivillage.com/carmellb/surgery/

Let me know if you have any other questions... or feel free to email me at boulderfam@hotmail.com

[greggo72]

Thank god we can talk to someone who had the surgery!! Ari is going to have a small area fused...T12-L2... They will be using a thoracic surgeon, we were told that her diaphram and organs are going to be moved and that the main concern after surgery will be infection(ari had an infection with her first surgery..she heals very slow and it took a long time for her back to finally close) and her bowels(?) seizing(?). We don't know how long the surgery will be but we were told that she was scheduled for march 7th but they are going to have to reschedule because the doctor has surgery that morning and her surgery will need to be an all day thing. Dr. Errico did tell us that she will proberly have more than one chest tube but i thought that was to drain not to keep her lungs inflated but to be honest... I couldn't think of anything to ask him. After i left i has a million questions... Was your child in a lot of pain? How long before he was able to eat.. How long was he in the hospital? Ari surgery will be the removal of the abnormal area he will reshape it add donor bone then he will be using cervical screws to hold everything together... How long would you say it took your child to be back to his pre-op state? I will proberly think of a million things to ask you later... Cindy

[scoliosis-mom]

gregg and cindy,

My heart goes out to you guys! But, you are in good hands My daughter, who was 16 at the time, had anterior/posterior spinal fusion on 2/24/2003 with one of Dr. Errico's partner's, Dr. Dryer, along with a thoracic surgeon.

She's much older than your daughter, but I'm sure there are some similarities.

She went into surgery at 7 am and Dr. Dryer came out at 7 pm, although I believe the surgery was actually about 10 to 10 1/2 hours long based on the surgery report. I was a little disappointed that no one gave me an update during that very long day. I would ask about that. They should give you a progress report. It's tough being the first family there and the last family waiting at the end of the day.

She had one chest tube from the anterior part of the operation where they deflated her right lung to access the spine from the front.

She was not on a respirator immediately after surgery, but because the anesthesia was so long, she needed a respirator about 2 hours after surgery in post-op. We finally saw her about 9 pm in post-op and she was moved to the PICU at 10 pm.

She only needed the respirator for one day, although it's a little difficult for the kids when they are awake.

She was in significant pain, but your daughter is much younger and will probably react differently. There was a noticeable swelling of her abdomen over the first few days (like a beer belly) due to lack of mobilization of fluids. This gradually subsided over a week.

She was in PICU about 5 days and in the children's ward another 5 days. She didn't really sit up until the 4th day, but a younger child will probably get moving sooner.

We were very impressed by the NYU PICU staff. The head cardiologist (a woman whose name escapes me) was phenomenal. The nursing care was excellent.

They did remove the catheter a little too early and my daughter was unable urinate. The catheter had to be put back in, but luckily no infections and we moved on.

We'll be at NYU on 3/28 for her 2 year checkup. I wish you the best of luck -
you've got a good surgeon.

Susan

[dawndd]

other congenital defects

My son is 13 and was just diagnosed with kyphosis due to 4 fused vertebrae in the thoratic region. I don't know the numbers yet since we will see a specialist for the first time next week. I know that I need to ask about the possibility of other congenital defects. What type of testing did Ariana have to have to rule out these problems. Are they invasive or only imagining? Were they done by the orthopedic doctor or did you have to go to other doctors?