Halo before surgery, anyone?

[marymo]

Hi,

My 7 yr old daughter has had scoliosis since she was about 6 mo old. Although it got severe fairly early (100 degrees by 3 or 4) it had stayed stable for the last 3 yrs or so. That changed dramatically over the past 6 months. Her curve went from 108 to 130 and now there is nothing to do but surgery. We are in the very early stages and don't even know who her surgeon will be. We initally saw Dr. Lenke (STL) but his schedule is booked solid through 2012 and he said she couldn't wait that long so he is referrering us to either Dr. Luhmann or Dr. Bridwell. I'm thinking Dr. Bridwell as my daughter also has congenital muscular dystrophy and I was told Bridwell worked with most of the MD kids. So Lenke said growing rods. Does anyone know the different reasons for using growing rods vs VEPTR? Also, he said she would have to be in a halo for 2 to 3 weeks prior to surgery. My sister was in a halo for 3 months at the age of 19 and it does not bring up pleasant thoughts. I was wondering if any other parents had children that wore the halo and what there experience was. They tried to tell me she might actually like it b/c it would allow her to breath easier. Hmmmmmm.

Any feedback would be appreciated!

[leahdragonfly]

Hi there,

I am so sorry to hear that your daughter will need surgery. My daughter's curve is very minor compared to your daughter's, but I wanted to tell you that she had surgery (VBS) with Dr Luhmann at Shriner's St Louis in May. I absolutely love Dr Luhmann, as does my daughter (who is 8). He is great with the kids. He is clearly very smart and experienced with scoliosis. He is very calm, kind, completely unhurried, and will answer any and all questions you can think of. He also told me he puts up all of a child's x-rays on huge screens and studies them over and over while planning for surgery.

We were very impressed by our experience during my daughter's post-op hospitalization. We saw a number of young children in halo's. It is kind of shocking to see at first, but I had plenty of chances to observe these kids in the nurses station and playroom, and they don't seem bothered at all by the halo. The nurses were very comfortable caring for the halo kids.

Good luck with your decision, I wish you and your daughter the best. Please let us know how things are going.

[LindaRacine]

2012? Really? That's impressive!

[tonibunny]

Hi Mary, I'm sorry you and your daughter are facing this. I had a halo for three weeks prior to my first fusion when I was ten, to pull out a stiff curve (I too had scoliosis since I was 6 months old, but it wasn't as severe as your daughter's). I had my anterior release done beforehand. In my case it was halo-tibial traction (weights attached to pins in ankles and head, nursed on a rotatable bed) though these days halo-gravity traction seems to be more generally used.

The worst thing for me was having to lie flat and not being able to turn my head (even though they flipped me over every 2 hours, the back of my head got very sore simply through lying on it so much). Hopefully your daughter will have the halo-gravity traction so she'll be able to sit upright and take part in interesting activities. The halo itself isn't as bad as it looks; the screws in the skull had to be tightened every day by a doctor with a spanner, and that wasn't painful but it was an odd sensation and I thought about it too much, built it up in my mind and ended up dreading this being done even though it didn't bother me at first.

No-one explained anything to me, so although I was quite a switched-on child, I really didn't know what was being planned or what would happen next. These days I think that things are explained to children much better! I think this is important. You could tell your daughter that she's getting a halo like an angel's, and it will help her to breathe. From what I've heard, most children these days tolerate halo-gravity traction very well

Good luck with it all!

Toni x

[marymo]

Wow, thanks everyone for the supportive words.

Dr. Lenke's nurse suggested I make appointments with both doctors and see which I'm more comfortable with. I was ready to toss Luhmann out of the equation but maybe I should see him.

That's interesting, what you said about the screws, b/c when my sister had one that's what she said was the worst part! She also agreed that it didn't hurt but was a weird sensation. I guess the good thing is my daughter has very limited movement (maybe the only time I'll say that sentence!) so I don't think being limited by the halo will be a big deal to her.

I am lucky to have an orthopedic surgeon for a cousin and he even suggested if she has to wait so long for surgery than why not put her in the halo for even longer and keep her at home.

I'm definitely going to have a lot of questions for these docs and I hope they make time for me!

[CamsMomKelly]

My son just had surgery 2 days ago with Dr. Bridwell he didnt have that halo before surgery but they used it during his surgery. My sons curve was at 53 , Im not sure what it is now.

[grandmom_of_4]

If you go to veptr.com they have a wonderful forum there with so many people that could probably answer your question about the difference between the growing rods and the veptr.
Susan