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Thread: Halo traction

  1. #1
    Join Date
    Jun 2004
    Posts
    55

    Halo traction

    First a quickie introduction... my son is 7 1/2 and was born with congenital diaphragmatic hernia. As a result he has short bowel syndrome (gets nutrition via an IV in addition to a gastric tube) and severe scoliosis diagnosed at age 2. He had grow rods with 4 surgeries for placement and lengthenings, with a 5th for his fusion when he was nearly 100 degrees at age 5 from T1-L2.

    Following the fusion, his pulmonary function diminished to the point that he is now dependent on Bipap at night as well as O2 almost 24/7 (he only has the equivelant of maybe one poorly functioning lung due to the CDH and intubations... 28 surgeries). Because of the fusion that poorly functioning lung (similar to someone with emphysema) wont be growing as a normal lung would, giving him a 5 yr old size lung. Not good.

    Prior to the fusion he was evaluated in TX for the titanium rib, found to be not a candidate. A few months ago he was evaluated in Seattle for the same program, but with my hopes and prayers that Dr S would be able to come up with something that would help the continuation of his pulmonary detioration. As expected he was denied the rib, however Dr S took Sean's case to some national meetings/conferences where Sean and other special cases were discussed at length. They agreed that the rib would not be a good choice for Sean, however they still felt that there was a possibility he could be helped.

    He will be having further testing in August when we go to Seattle for his sleep study, with the idea that all going well he may be a candidate for a 4-6 week stint in Halo traction to try to help improve his pulmonary function. It would mean most if not all of the 4-6 weeks would be spent in the hospital, 10 hrs from home, but if it could improve his pulmnary status back a year or 2 before his curve started re-progressing (10-12 degrees of a kyphotic type curve near the top of his fusion and beyond) then it just might be worth doing. As it stands now, we have been told he will likely get to a point where we need to address the idea of a trach/vent combo to support him, knowing that he wont ever get off. This could potentially postpone that...

    Anyway... I was wondering if anyone has any experience with the Halo traction, thoughts or ideas, as we go forward with the testing prior to making any decision I am hoping to make myself as well informed as possible so I can ask questions that will help us to make the best decision possible for my little guy.

    Thanks for your help, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi my friend, Heidi!

    Thanks for the update... I've been thinking of you guys and wondering how you are doing. Sounds like you have something to think seriously about. Good luck with your research and decision-making...

    I know the Shriners hospital in Salt Lake City has extensive experience with Halo traction. I've met a couple children who have been patients there prior to major stabilization fusion surgery. It is an option that you probably should seriously consider.

    Big hugs to your boys! We'll talk more later...
    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/

  3. #3
    Join Date
    Jun 2004
    Location
    Nanaimo, BC, Canada
    Posts
    6

    halo traction

    Hi Heidy:
    When I was told that they considered a pre-op halo traction for my son, it took me a long time to even think about it. It sounded like something out of a Frankenstein movie.
    Danny was six at the time, and he had gone through so much all ready. However, after talking it over with several specialists I was convinced that in order to obtain the ultimate result from the surgey it was necessary.
    Heidy, as barbaric this procedure seems, our kids handles it a lot better than we do. In fact, Danny was more worried about me than himself. I, know, they see the pain in our eyes, and it is sad that they worry about us when they are going through so much pain and fear.
    I can't give any advise, only share my experience. Our poor kids having to cope with this when life is so hard anyway.
    I am so glad to have found this site as there is not much awareness out there about the severe conditions our kids and us are coping with.
    Hugs, Christina

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Heidi,

    Was your child's lung further compromised by the number of intubations required for each surgery ?

    Unfortunately, I don't have much to add about the halo traction procedure except that I know a few children who have been helped by that procedure. I just wanted to say that when I read your post I felt a deep sadness for both you and your little boy. I'm not a medical person so I don't know the extent of suffering in small children - but progressive scoliosis in young children has to be one of the WORST things a child can be afflicted with. The number of surgeries required for severe or malignant scoliosis is mind boggling.

    As a mother of a three and a half year old that was diagnosed with severe scoliosis two years ago, I have to laugh at how naive I was prior to the birth of my children. I thought at the time that the book "What to Expect When You're Expecting" or "What to Expect During the Toddler Years"was ALL I needed to know - boy, was I wrong !







    Celia

  5. #5
    Join Date
    Jun 2004
    Posts
    55

    Thanks for the support!

    Carmell,

    I knew you would find me here. Its going to be quite a summer with the testing, researching, and decision making.

    Celia,

    The biggest compromise to Sean's lungs was the diaphragmatic hernia (basically a hole in his diaphragm allowed most of his abdominal organs to grow in his chest, preventing his left lung from growing. And of course because he was on an oscillating vent for 2 weeks at birth it saved his life, but did cause some lung damage). He has had several emergency surgeries due to midgut volvuvlus, gall bladder, etc, and of course his back surgeries (5 total) that required him to remain intubated for a few days after each, but truly the oscillating vent was the worst.

    I think you would have to know Sean to know that he really isnt suffering in the way many people think he does. He is so happy most of the time, truly. He is full of smiles and laughter, teasing his big brother mercilessly much of the time but OH do they adore each other. Even when he is sick or in the hospital, his personality shines. He may be blunt as all get out and tell a doctor/nurse to GO AWAY or I DONT LIKE YOU, but they all adore him and his fighting spirit. He is my hero... I know I would never deal with this stuff the way he has and come out of it smiling.

    Our goal at this point for him is to be sure he has the best quality of life we can give him. And thats really why we are considering this. If we truly can get his pulmonary function back to where it was a year or even 2 years ago, it would be so much nicer for him to not have to have the O2 tubing following him around 24/7, and to just need it at night. Frankly, even if we could halt the deterioration or slow it down I would be happy. The idea of a trach/vent is daunting, and since the pulmo told us she wants him involved in the decision whether to do it or not, to put that off for a while sure would be nice.

    Christina,

    I would love to hear more about your Danny, and your experience with the halo. What I keep running into is that its not so bad to have it on, but the removal of it is awful. I assume that with kids anyway they sedate them for the removal? I checked out some photos, and I am not sure how this would all work. Because Sean has a central line on his chest, I am concerned about the vest part covering the line preventing me from doing the dressing changes on it (2-3 times a week). Also, because he is also g-tube fed, I wonder how low down the vest comes and if that too would be covered or made less easily accesible. He is already on neurontin and methadone for pain control, small doses thankfully, but nonetheless I imagine that this would cause some pain and we would have to increase his pain meds accordingly. Lots of things to think about, so would love to hear your story.

    Anyway... thanks again ladies for your input!

    Hugs, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  6. #6
    Join Date
    Jun 2004
    Location
    Nanaimo, BC, Canada
    Posts
    6

    re halo

    Hi heidy;
    Sorry I was so long in my response. I have to say to you that I feel so sad for your little guy, and for your family to have to go through this.
    I asked Danny again, how it was to be in traction. He told me that the worst was when they tightened the screws in his head. This was several years ago. However, I don't think the method they used has changed.
    Danny also had a great, sunny personality, he was such a trooper. His sister was always so protective over him. She is 41/2 years older than he is. But when she turned 16 she told me that she had had alot of resentment towards her brother for all the attention he received when she was growig up, and felt a lot of guilt over those feelings. So if you have not already done so, I suggest you address this with Sean's brother.
    I have posted our story under surgical (revision) in this forum, titled "my son". Hugs. Christina

  7. #7
    Join Date
    Jun 2004
    Location
    Ireland
    Posts
    35
    Hi all,
    I'm probably a bit late in this discussion but I had Halo traction for my 110 degree curve over 20 years ago.It's very effective in most cases.Apart from a mild headache for 48 hours after placement of the Halo Clamp I had no problem with pain.it's one of these things which sounds and looks a lot worse than it actually is but it's worth trying to get some correction.The torque wrench for tightening the screws is a bit strange but not painful.
    Sins

  8. #8
    Join Date
    Jun 2004
    Posts
    55

    It looks like it is a go......

    Spoke with the doctor in Seattle yesterday afternoon, and due to the increase in pain and the change in the deformity the last few months, we need to do this. And with winter flu/rsv season coming up we are in a bind time-wise. So... I am supposed to get a call from the scheduler in the next few days and hopefully headed to Seattle within the next week or two! YIKES! He said that Sean would have to be inpatient for most of the time with maybe the occasional pass to go out on a walk or maybe to a movie depending on how he is doing.

    The plan is to place the halo, leave it in place with modifications as needed with frequent CT scans, and then after the 4-6 weeks is up to go in and remove the halo along with all his current hardware, replacing the hardware with new and fusing him possibly as high as C7. There is an area below the top of his current fusion that appears to have some pseudo arthrosis, and clearly that is the area causing him more and more pain based on Sean's description. We have had to add tylenol/codeine at least once a day now in addition to his other meds (which have also been increased).

    The good news is that the doctor called this a low risk procedure, we needed to hear that! What will be hard is being so far away from home for so long, though at least my aunt and cousins live in the Seattle area, this will be a 10 hr drive from home and friends. And we will have to leave my MIL at home alone (she lives with us and has her own medical issues with cancer/gtube, etc), with my hubby flying back and forth every couple of weeks to check on her, mow the lawns, that sort of thing. I dont know how much internet access I will have at the hospital, when Sean is in-patient I rarely go farther than the cafeteria and since he hasnt been in-patient there before I dont know what kind of access I will have to a phone line.

    Take care all, and thanks so much for sharing!

    Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  9. #9
    Join Date
    Jun 2004
    Posts
    55

    Halo Traction in progress!

    Well, we are here in Seattle, several weeks into the traction. The doctor decided to alter a bit how he was going to procede by removing all his old hardware at the same time as he placed the halo, and at the end of this month he will have his fusion surgery to re-fuse the upper portion of his t-spine (hoping not to go into C though he may have to use the bottome one or 2). So far the correction has gone from over 80 degrees kyphosis to about 62... hoping for a little bit more but I will take 20 degrees total as being much better than where we started 5 weeks ago (today).

    Sean is doing awesome with it all, I am so proud of him. I have a few fears of how he will cope with the 2nd surgery, as there is a greater than 50% chance he will not only have to keep the halo, but instead of traction will have it attached to a vest/brace with rods so he wont be able to move his head at all. He will have to wear that for 3 months, but we CAN go home with it and let our home orthopedist monitor him. Likely a big need for PT/OT I would imagine, so we are looking into whether he would be a candidate for the rehab hospital in our town after the halo/brace is removed, we shall see.

    I have to say, I am so thankful that Dr Song felt that he could help Sean and that he was able to get everything in place so quickly. Its been difficult being so far from home (my MIL lives with us and got a Compression fracture a couple of weeks ago and didnt tell us!) and with all the bills, worries about her, the house upkeep, etc, its been stressful. But.. seeing the difference in Sean already its been worth it. His sats are better when in traction, he is learning different and new ways to cope with his frustrations (silly string is a much nicer way to tell the docs/nurses that you are angry than hitting and kicking!) and I have become much more comfortable with the idea of being away from our home hospital. Still some difficulties with dealing with residents and doctors who are not familiar wiht Sean, and trying to do too much or make changes when they are not needed, but we are working through that. AND.... Sean is the first patient ever in this kind of spinal traction to get to move OUT of the hospital and into a hotel for a few weeks!

    Anyway... just wanted to update in case anyone has wondered what has happened. Life in Seattle is very different from our hometown!

    Hugs, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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