Spine curvature after surgery

[WNCmom]

Lisa--

I know Pam is right, it doesn't do any good to worry about what might happen. But just for the record, I also worry, even though I try not to. Even though most of Sidney's spine is fused, because at 13 he has so many years of growth left it seems anything could happen.

As for walking, we were told it was the only exercise that was okay before 3 months. I'm not sure long distance is as important as making sure it happens every day. Maybe others can comment on this. I've read that when the nerves in the soles of the feet are stimulated, it sends an electrical current up the spine, which is what makes bones grow and heal. Even for someone not recovering from spinal surgery, it keeps the body from getting stiff.

Sidney has been lucky and had no pain, so we have insisted that he walk. It's also a chance to get out and breathe some fresh air. We don't live in a neighborhood (we actually live in the woods) and he generally doesn't like to walk alone, so either my husband or I go with him, and although he has some say-so, we typically pick the distance and place. We've had some great conversations! The surgeon told us hiking would be fine if Sidney was up to it. He is able to do more, and it can't hurt to do more, so we do. Today, though, he was walking with my husband on a trail, and even though my husband had warned him about it, he slipped on a wet log step and fell on his knee. It wasn't a bad fall and he seems to be okay, but my husband said it was scary. We will all be more careful in the future.

Sounds like Tahlia is doing great.

Mary Ellen

[smileyskl]

Yes, Lisa, I am hearing from some of these lovely people, including yourself, and I don't feel so alone. I guess it doen't matter that we are all from different places or countries, or whatever. We are loving caring parents coming together to help each other. I am so glad to have a place like this when so many people don't seem to understand - I have somewhere to get information and support. Thanks.

[txmarinemom]

Y'all ... I have kids too. And I know I'm very lucky it was me that needed surgery instead of them.

I do understand the fear of turning over your child to someone else, and I never meant to infer otherwise.

All I was saying is "what's done is done" ... and every second you waste on worry after the fact serves no purpose. Enjoy today - and every day that follows, until (or IF) you have reason to *not*. Life is too short.

Hugs to all you Moms,
Pam

[Snoopy]

Lisa,

I'm sorry, I didn't mean to scare you with my reply. Sometimes I hesitate before posting about Jamie because her story is so different from others. 1) She has Kyphoscoliosis (both Kyphosis and Scoliosis); 2) She has a very long fusion and 3) She doesn't have any screws in her back. All of this makes her case even more distinct. We all have to remember that we are all sharing in hopes of helping someone, but we all must remember, ever patient is different.

Yes, Jamie is due for a follow-up this summer. Within two months after Jamie's last appointment, her surgeon moved from Pennsylvania to Arizona. So we will be starting over with a new surgeon. I will be taking her to an adult surgeon this time since she will be 18 in August . (You want something to worry about---Jamie will graduate high school in June, start college full time in July and turn 18 in August!!! Now that's scary and something to worry about. )

Mary Lou

[Snoopy]

Mary Ellen

I bet your husband's heart stopped when Sidney fell!

I've always tried to be a mom who doesn't panic. And usually I don't. However, I failed miserably once. We were in the middle of Toys R Us and Jamie decided to try a pogo stick. She was more than one year post-op, so I didn't stop her. Needless to say, she fell. I saw it happening but there was nothing I could do to catch her. She landed on her backside, got up with a look of embarrassment and assured me she was okay. I can only imagine the look on my face. Jamie seemed more concerned about me than herself. She reminded me that she was allowed to do anything and that she wants to try new things and get back to doing everything she did before surgery. She reminded me that her back was strong and not to worry so much.

I then had to explain myself. See, I was worried about her back, but not her spinal fusion. All I could see when she was falling was the fact she was going to hit her back on one of the shelves slide down and then hit the bottom shelf with her back. All I could picture was a major brushburn the whole length of her back! I was also worried about her hitting her head.

I guess what I'm saying is that as moms we will always have something to worry about. It just never ends. It does feel go though to worry about the normal everyday things instead of spine issues.

Mary Lou

[pmsmom]

Dear Smiley,

I do understand what you're going through. My dd isn't scheduled for surgery yet--we go in Feb. to have the dr. recheck her curve.

So you are definitely not alone. I am encouraged by what I've read on this forum and have followed Mary Lou's, Lisa's, Mary Ellen's, Bethany's, and others' stories about their children's surgeries (many of them *very* recent). I am very happy for their successful outcomes and am praying that when the time comes for us, we will have the strength as well to get through our dd's surgery. I found that reading of their experiences has helped alleviate some of the anxiety I feel as there are many similarities and I have an idea of what to expect.

This forum is great for support! Soon we will be on the "other side" and be able to lend our support to others just starting out.

Btw, Bethany, how is Jesse doing after having to go back into the hospital?

Marian

[pmsmom]

Oh my goodness! I just read where Sidney fell and my heart was in my throat.

Moms!

[Kitty]

I worry about Tahlia tripping all the time. I am worried she'll jolt her spine and the screw will come loose. Although, my main concern with Tahlia I think is UTIs. She had quite a few prior to surgery and the doc has said if she gets a UTI and the rods become infected (or seeded I think he said), that would be "disastrous". So i have her on cranberry tablets to ward off any nasty little infections.

So far, so good.

Lisa

[smileyskl]

Marion,

I agree, this forum has been a great source of anxiety relief. I know how you feel now too. Its awful to be on the rollercoaster of when to do surgery and if you should do surgery. I was relieved to have a decision made about my daughters surgery only to trade that worry for the worry of the surgery itself I am sooo glad to be able to talk to those who are now on the other side of surgery. It is very comforting. Hope everything goes well at your appointment. Keep us posted.

Sharon

[WNCmom]

Sidney at 7.5 weeks post-op

Hello All--

We've just come from Sidney's followup appointment at 7.5 weeks post-op. All looks good.

Dr. Cahill said that if his fall last week had had any effect they would have seen it on the x-rays. He was not concerned. I asked about crankshaft (S. is Risser 0) and he said it is unlikely, even though the top two vertebrae of the fusion have hooks (he said he likes to use those there to help reduce the small chance of junctional kyphosis).

I also asked about massages. He said that was a question he'd never been asked before, but that at 6 months post-op it would be okay for massages in the fusion area. Elsewhere would be fine before that.

Sidney still has a slight list to the left. He expects that to resolve within 9 months post-op; apparently a doc at Shriners has done a study on it and almost all of them do. Also, one of Sidney's shoulders is still higher than the other; he told us it would be up to S. to look in the mirror and hold himself straight, then remember how that feels and practice good posture. It was good for S. to hear it from Dr. Cahill, since his Dad and I have been reminding him of that so much.

We have the option of having a 3-month post-op x-ray done locally in NC and sent up for review (I think we will do that), and then we will return to Philadelphia at 6 months for a checkup in person.

Now if we can just get out of Philly-- the weather is not supposed to be good this afternoon!

Hang in there, Smileyskl....

Mary Ellen

[laurieg6]

I'm glad to hear that Sydney's doctor said the same thing as ours about the shoulder height discrepancy. When Alexander thinks about evening them out it really helps with this. If only he could just do it without thinking, but it's still an effort - 1 1/2 years post-op. He just has more "normal" 13 year old boy things on his mind and his physical self right now isn't one of them.

That's great news about the fall not impacting his recovery and the overall good report you got from the doctor. We panicked when Alexander fell a few weeks after surgery too, but it also didn't seem to have a negative effect and he had no pain as a result.

Take care,

[babachi]

Hi Ladies
Mary Ellen, I'm glad Sidney's fall was not serious.
Kitty, all of Jesse's team said it is great for him to walk. They never said how much, but I guess as much as he can handle. They said it would be good to loosen up his muscles and alleviate stiffness.
We are at Children's as I'm typing. Jesse started having drainage again from the incision. I hesitate to call it yellow and it's certainly not pus-y. It is a bit puffy around the area and I fear it's another "pocket" of fluid. On the plus side, there is no fever or redness.
I will keep you all updated and I'm glad for everyone who's child is doing well, and thinking about those who are awaiting surgery.
Bethany

[pmsmom]

Hi Ladies
Mary Ellen, I'm glad Sidney's fall was not serious.
Kitty, all of Jesse's team said it is great for him to walk. They never said how much, but I guess as much as he can handle. They said it would be good to loosen up his muscles and alleviate stiffness.
We are at Children's as I'm typing. Jesse started having drainage again from the incision. I hesitate to call it yellow and it's certainly not pus-y. It is a bit puffy around the area and I fear it's another "pocket" of fluid. On the plus side, there is no fever or redness.
I will keep you all updated and I'm glad for everyone who's child is doing well, and thinking about those who are awaiting surgery.
Bethany

You and Jesse are in my thoughts and prayers, Bethany!

Do keep us posted!

Marian

[babachi]

We had an appointment w/ the surgical nurse (who wanted to wait to see him tomorrow because she was booked tight today). Umm, I'm sorry, can you look at his records and see the problems we've been having with drainage? Ended up Jesse's surgeon was the doc on call and the nurse conferred w/him before we got there. He walked into the exam room not knowing it was us. Needless to say I was quite happy he was there. He took over at that point and remarked about my diligence. (so there, Nurse!)
He's not sure why there is this drainage. Possible scenario is the stitch used after the irrigation and debridement is irritating and maybe a staple, even though less cosmetic, may be the way to go. Of course my question was will he just staple that part of the wound or does he need to go in, remove the stitch, etc. Yep, that's more like it. If it gets to that point, he will go in again to take a look around, so a third surgery is not outside the realm of possibility. Treatment for now is to use a compression bandage and remain on stomach for next 24 hours. Change the dressing tomorrow. Jesse has his post op on Thursday, so we will reassess then. I'm under the impression that if there is still drainage, Jesse will be seeing the OR again.
Please cross your fingers for the drainage to stop!
Bethany

[smileyskl]

Bethany,

I will be praying for Jesse also. When it comes to hospitals, you have to be a diligent and sometimes pushy parent. I think they expect that. Hope everthing goes well.

smileyskl