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Thread: Halo Traction and Upcoming surgery questions

  1. #1
    Join Date
    May 2006
    Posts
    2

    Halo Traction and Upcoming surgery questions

    Hi- I have read this forum for months now but this is my first time posting. My 11 yr old daughter- Andi, has congenital scoliosis. This has been one roller coaster of a ride. After being on a waiting list for 6 months with Dr Lenke at Shriners in St Louis, her surgery was scheduled for March 6 but they found a cyst on her spinal cord and cancelled the surgery until they could decide whether or not to remove it. After they decided it would be fine to leave the cyst- back on the list we went. We were then told her surgery date would be May 15th. We went last week for the pre-op tests and x-rays and were told that now she will need to be in halo traction for 5 weeks before her surgery and that they have now decided to remove they cyst when they do the fusion surgery. Her upper curve has progressed to 105 degrees and Dr Lenke said that the curve in her neck is very stiff. He wants to use the traction to loosen the curve in her neck before fusing it.

    Needless to say, we were devasted by the news. We will now be getting her halo on May 15th instead of the surgery. The surgery is scheduled for June 19th. Andi seems to be in good spirits and just wants to get it all over with. I know that the traction is the best for her but it is going to be so hard to see her like that for so long.

    Is anyone familiar with the halo traction? We weren't given much information at the visit and were in too much shock to ask many questions.

    Has anyone stayed for a long duration at the Shriners? I am wondering if they will have things to keep her busy or if I should plan on bringing a ton of things for her to do? 7 weeks away from home is a LONG time!

    I am planning on staying in the parent housing at the hospital during the week and my husband and son will get a hotel room when they come for the weekends. Has anyone used the parent housing? They also told me I could stay bedside. I am just trying to get an idea of what to expect once we get there.

    Thanks-
    Deanna

  2. #2
    Join Date
    Jan 2007
    Posts
    65

    Shriners Hospitals

    Deanna,

    Welcome to the forum. I'm sorry to hear about your daughters setbacks. I know how hard it is to always be waiting, but hang in there. You are doing great. Just remember to breathe when you feel completely overwhelmed.

    We have not had to put Spencer in Halo traction, so I can't really say much about that, but we have been long time patients of Shriner's SLC. I'm sure there are differences in the various Shriner's Hospitals, but there are also probably many similarities also. When we have been in the hospital with Spencer we have always stayed bedside, but we have been there long enough and often enough to become familiar with the parent rooms. They are a great resource for families who do not live close and who will be in the hospital for a long period of time. They are like college dorms and offer a good place to get some rest.

    Also, there are things to do at the hospital. They have the standard things like video games, movies, books, board games, etc. There is usually a child-life specialist that can help kids find things to do and coordinate group activities for kids in the patient ward. At shriners SLC, volunteers come in almost every evening and do some kind of art project with the kids. Because of Spencer's disabilities we dont usually do them, but it always looks like the kids have a good time. Shriners SLC also has an in-hospital school for kids who will be in the hospital for long periods of time during the school year. I'm not sure if this is done in other Shriners, but I would not be surprised if it was standard fare at all Shriner's. We also have a gym with basketball, pool, ping pong and play equipment.

    Again, I'm not sure if all of these things will be the same at your Shriner's but I'm willing to bet there will be many similar things. Since you've already been there for appointments I'm sure you know what most of what your hospital has. If not, ask them to take you on a tour.

    You should also look into whether there is a Ronald McDonald House near your hospital. Your husband can probably stay there instead of a hotel when he comes to the hospital. The RMH near our hospitals is a great facility and only charges (asks for a donation) $10 per night.

    The other thing you need to plan on is meals for yourself. Patient meals are free in the cafeteria, but attending parents must pay. Our Shriners has a very good and reasonably priced cafeteria, but when we are there for a long time we usually bring in some groceries and use the kitchenette in the parent's lounge.

    I hope this information is helpful. Good luck with all the upcoming procedures. It sounds like life is going to be very stressful for a while. Just remember that it will be over someday, and life will be much better after its done than if you had done nothing at all. Be strong and just work through each day as it comes. Pretty soon you will have more days behind you than ahead of you, and before you know it you will be done. Keep us posted on how things go.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  3. #3
    Join Date
    Nov 2005
    Posts
    402
    Hi there,

    I had halo traction for 3 weeks in between the two stages of my first fusion surgeries when I was 10 - that was over 20 years ago now. The worst part about it was having to lie flat all that time on a rotatable bed (it's v. difficult to use bedpans in this position!), but I believe that these days kids usually sit up in a wheelchair during the day.

    Also, please make sure that she'll be sedated when they fix the halo/take it off. I had mine put on during surgery, but I was wide awake when they took it off. It's not painful, but it did freak me out a lot and I didn't handle the experience very well.

    I'm sure your daughter will be OK - the main thing will be to make sure she doesn't get bored and frustrated, but from what Spencer's Dad days, it sounds like the people at Shriner's aren't likely to let that happen

    Good luck to all of you,

    Toni xx

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Deanna,

    Ditto what Spencer's dad said. Every hospital is different, but hopefully some of the same "perks" will be at your Shriners. My Braydon is also 11yrs old. He has not had halo treatment, but we have visited several patients at Shriners while in the halo. They all have done amazingly well. One girl (age 8) just got out of her 4th halo (yes, 4 times in halo traction). She LOVES being in the halo because gravity is no longer an issue for her. She is free to run and be upright without having gravity holding her down. Weird kid, I know, but still, a very positive experience with halo.

    Like Spencer's dad said, Shriners should have school activities while Andi is in-patient, along with many other Child Life activities. I think you'll do just fine.

    My best wishes to Andi. This isn't going to be easy to get through, but once she's done, she'll be much better off. Please keep us posted when you can. We'll be thinking of you both, and your family.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
    Join Date
    Dec 2005
    Posts
    40
    Hello
    My son who is now 13 yrs old had Halo traction at 5 yrs old. He did the traction in the Hospital for 4 wks then had surgery then went home with the Halo on (no traction this time)for another couple months. He did really well and seemed to adjust fine to it. It sounds like your daughter is doing ok with the news and that is good because being that she is older sometimes they might take longer to adjust or get upset more easily.

    I know when you first hear the word Halo and halo traction it can be shocking especially if already had other surgery planned and were preparing for that. But after it is done and you all are adjusted to it, it is not that bad. Oh someone else posted that they had halo traction many yrs ago and had to be lying down, well dont worry about that, things have changed. Cole was able to sit up in wheelchair or bed for the traction. They would put more weight on daily. We were even able to wheel him around the Hospital tho this was a two man job since we had to push wheelchair, pull IV, and pull weights too but it was feasible/is doable.

    I can email you pics if you like of Cole in his Halo traction and then just Halo. Not sure if can post pic here.actually i might be able to attach one on a post I guess. One thing to be aware is that you wont be able to wash her hair as well as normally. Again, it is doable but takes some work. I having a boy didnt have so much hair to deal with but having a girl, esp if long hair you may have more issues. I would suggest you cut her hair if she would allow unless maybe it alreadyis short. I learned how to wash the hair from an aide while in the Hosp. Let me know if want me to give you info on that or ask me any other Halo questions you may have. Wishing you and your daughter the best.
    Stacey in CA
    Last edited by mom2cole; 05-10-2007 at 07:35 PM.

  6. #6
    Join Date
    Apr 2007
    Posts
    11

    Halo Traction

    When I had my surgery in 1979 for congenital scoliosis my roommate was in a halo traction bed. I recall meeting her very clearly. Our surgeries were performed within a day of each other I believe. We never kept in touch but I remember her so clearly. I don't recall her being in major discomfort and if my memories serve me correctly she had a good attitude. I wish I could be of more help!

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