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    Old 12-05-2009, 07:44 AM   #1
    Sister98
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    Arrow 11 year old with spine stenosis, etc

    Hi folks, thanks for reading this. My younger sister, an 11-year-old, has been complaining of leg pain for almost a year - at first it was pain behind the right knee and we we assumed it was due to pulling a muscle or something due to ballet classes. However she progressed in the past half year or so to having an uneven gait, pain in her right leg after physical activities (also experiences restlessness/tingling in the same leg). She prefers to sit leaning forward. Lately her pain has been more frequent and probably longer lasting each time. We saw an orthopaedic doctor who is referring us to a spine specialist.

    My main question, after seeing the MRI and seeing some references to spine stenosis, spondylolysis, etc, is that on her MRI the L5 or S1 (I forget which) has an irregular shape. While the other vertebraes appear normally shaped (sort of square/rectangular looking with four angles), that vertebrae is roundish on top and the space (shown in black) is larger between those two vertebraes. I was wondering if any of you have seen this and what it possibly means? We are scared of possible surgery on such a young kid. Thanks.

     
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    Old 01-02-2010, 01:02 AM   #2
    Sister98
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    Arrow spondylolisthesis

    To give you an update, the doctor's diagnosis is spondylolisthesis. It looks like we will need to have surgery due to the nerve compression which is causing the leg pain/weakness/restlessness - most likely in a month's time. Our family is scared for surgery but now realize it's the only choice.

    Have any of you had adolescents or children have spondylolisthesis surgery? Any words of advice or just your story on how you dealt after the surgery and the outcomes? We are looking at months and months of recovery I think.

    Thank you in advance.

     
    Old 01-02-2010, 01:00 PM   #3
    lilac100
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    Re: 11 year old with spine stenosis, etc

    I don't have any experience with an 11yr old but I just had the surgery to correct my spondy of L4/L5. It was the best thing I've done as far as getting rid of the pain. The recovery was difficult, perhaps since she is so young it will be easier for her. I was using a walker for 2 weeks and rapidly progressed from there. It also depends on what approach they take to the surgery. There are doctors that will do it minimally invasive that would make the recovery easier for her.

     
    Old 01-02-2010, 06:37 PM   #4
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    Re: 11 year old with spine stenosis, etc

    First, I can put your mind at ease and let you know that spondylolisthesis is not rare and in fact not un-common in young women. I found out at 20 that I had spondylolisthesis L5-S1 but looking back I could pinpoint symptoms when I was in the 10-15 year old range. Including weakness in one leg and periods of severe pain down the leg (which I now know was nerve pain).

    However, it seems a bit more severe in her case. My symptoms at that age were more fleeting and disappeared after 15 until I was about 19-20. Since your sister has enough symptoms from it, then it is a good idea to get surgery as soon as possible. Nerves are temperamental and if they are impinged for too long the damage can be permanent. It sounds like you are moving along at the right pace and taking this on the good way - with no delay.

    I have seen some people post on here who had children with spondylolisthesis but not in a while. Can you find out exactly what the surgery will be and let us know? There are so many different kinds of surgeries and if you get me the exact terms I may be able to give you more of an idea of what they'll do, her recovery, etc.

    I encourage your family to advocate for her after surgery for pain management. Sometimes children are under medicated compared to adults so though she should expect to be uncomfortable, letting her know that yes it will hurt after and they want to help. They won't make you pain free right away but we'll all help you to reduce it as much as possible. But that she'll also have to fight through the pain to get moving (getting up and walking is not pleasant). But the more you get up the better you feel.

    The surgeon's staff and the hospital staff should listen to your concerns. Before the surgery talk to her about a "pain scale". Many facilities have you gauge your pain on a "0-10" scale where 0 is no pain and 10 is the worst ever. Tell her to think about it each time she's asked and to feel free to let her nurses know exactly what type of pain she's having, if it's getting better, exactly where it hurts, etc. Sometimes kids say "ow, it hurts" and don't communicate what is going on very well. So the nurse may think it's her back. But maybe she's got a neck ache from the way she's laying, or her stomach is bothering her from stress, or it's actually the IV that hurts, etc. So by working through it with her she can get more complete relief.

    I hope it also helps to know that with the surgery she may wake up with significant surgical pain but it's likely the weakness and nerve pain may disappear soon after surgery. Make sure that the surgeon is experienced in pediatric spine surgery if at all possible.

    I'll watch for your next post so I can answer more questions for you.

    Karin
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    Old 01-06-2010, 11:33 PM   #5
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    Re: 11 year old with spine stenosis, etc

    lilac100, it's great to hear such an encouraging outcome like yours. Did you have a fusion surgery and have to wear a brace afterwards? About how long was your recovery period? Though it sounds like you were walking right away with help of a walker!

    SpineAZ/Karin, thank you for your advice and care. Right now we don't have the details of the surgery but from the doctor's visit my parents say that it will be fusion in the back (posterior) with screws put in place. She just went to the neuro surgeon and he did not relay much to us except for the fact that he will be doing his part in the surgery. I will let you know as I find out more. Also, we were referred to the childrens hospital where our presiding doctor is a specialist in pediatric spine surgery so I hope we are in good hands.

    Regarding her disk space irregularity, from a CT report, it says that "there is markedly irregularity of the superior endplate of S1 chracterized by erosions of the anterior surface. The inferior endplate of L5 is also irregular with a somewhat of a concave and angulated appearance." I am wondering if this will affect her fusion outcomes? They think that this could be the result of an infection but it does not seem to be a priority.

    Thank you again.

    Last edited by Sister98; 01-06-2010 at 11:37 PM.

     
    Old 01-07-2010, 02:00 AM   #6
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    Re: 11 year old with spine stenosis, etc

    I was up and walking the next day. They make sure you do to avoid blood clots in the legs. I had a spinal fusion from the back with 2 rods, 4 screws, an interbody cage, and a cross bar to stabilize the 2 rods. I wore a back brace for 6 weeks, although it was just for comfort. The doctor started letting me bend, lift, and twist at 6 weeks, and I went back to work at 3 months. Some take longer to recover and some are quicker. If my job hadn't been so physical they would have let me go back at 6 weeks. I started physical therapy at 6 weeks and stayed in it for six weeks. Also another thing they did just for my job, a lot of people don't do physical therapy after surgery. I hope your sister feels better soon.

     
    Old 01-16-2010, 11:15 PM   #7
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    Post Re: 11 year old with spine stenosis, etc

    Update:

    My sister had her surgery this past week and it's been about 3 days! Going home on the 4th day. She had a TLIF spine fusion which is on the minimally invasive side, and laminectomy & decompression for her nerves - and according to her the leg weakness/pain is not there anymore. I pray it will stay that way. It's painful to watch but they say she is doing well. She is on pain medication including Tylenol and Oxycodone.

    For those of you who's been through this - how long would she need pain meds? How long after the surgery did you get off the medication, and how did you feel? Basically - when will the pain stop. Thanks!

    Edited to add: they also walked her around the very next day after surgery, and the physical therapist came for 2 days and told us to follow her example thereafter. I thought she would be wearing a brace or protective gear around her middle but there is just a bandage.

    Last edited by Sister98; 01-16-2010 at 11:22 PM.

     
    Old 01-17-2010, 10:36 AM   #8
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    Re: 11 year old with spine stenosis, etc

    In the immediate recovery period she should be given the pain meds as scheduled (if they say every 4 hrs then dispense to her every 4 hr). The reason that is of she keeps a steady level of meds in her blood she won't have "spikes" in pain. Many of us find that if we bypass the 4 or 6 hr mark we all of the sudden have severe pain that takes a few doses to get under control so by taking them regularly she maintains pain control.

    Keep asking her "on a scale of 1-10 how is the pain?" as I imagined they asked her in the hospital. If she starts to lower the number you can consider reducing the amount of meds. Ask the pharmacist when you fill her home prescription if the pills can be split to reduce the dosage. Some pills are made with a special coating and should never be split (the coated pills are coated for gradual release of the meds).

    Make sure PT tells her about no bending, lifting, twisting and for how long (we call this "No BLT"). Make sure she and the family know exactly what she should and should not do. For me the no bending is fine but I frequently pick up my cats and I'll have to tell myself not to. That may be harder for a kid.

    Bracing is not always needed. Depends on how many levels they fused and her surgeon's preference. Actually kids fuse faster as their bones are still growing. We adults have to worry since after around the mid 20's we no longer make new bone as quickly or as efficiently.

    I would just have someone make sure that if she has any problems she's not afraid to tell someone. If she goes back to school she may not make it full days right away and that's okay. No need to be overly brave.

    Be prepared in that sometimes in the first few weeks of recovery pain can spike and some nerve pain can return as the nerves heal, often that's how you know nerves are healing is by pain but any significant increases should be monitored and call the doctor as needed. He may say to give her an extra dose of meds, but you want him to know of any changes. Does she have a follow up with the doctor soon?

    I must say I am SO happy to hear she's doing well. She's young to have this done but it sounds like even she'd say at this early post-op time that it was worth it...is that right? Is she okay emotionally with all this? Tell her your adult friends who have had this done are very proud of her and her progress.
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    Old 01-21-2010, 07:34 PM   #9
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    Re: 11 year old with spine stenosis, etc

    SpineAZ, thanks for your concern. She is doing well...not much pain given the pain medicine and no school for at least 1-2 months. However there were some numbness on her other leg after the surgery. The leg that had the weakness/nerve compression is fine! This is a new puzzle for us since we'd expect the old one to still act up. I remember reading in various postings that people feel a certain degree of nerve irritation after the surgery since it's still trying to heal, but this doesn't seem normal. The doctor told us to take some Motrin or Tylenol (we picked Motrin) since it might be due to a swelling of the incision - but I hope it won't last.

    Does walking more around the house help? Did you guys feel some nerve irritation in your legs even after surgery and did that go away?

    Last edited by Sister98; 01-21-2010 at 07:34 PM.

     
    Old 01-21-2010, 08:28 PM   #10
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    Re: 11 year old with spine stenosis, etc

    There can often be nerve irritation in surrounding areas and thus your doctor maybe right. The two areas, where she had a problem and the "good side" are close anatomically so it makes sense. Plus she may be laying, sitting, or walking a bit awkwardly due to pain and discomfort and putting a little extra stress on the other leg, etc. If it gets really bad call the doctor but other than that expect some flares of nerve pain. If walking around alleviated it that is okay (as long as she does only as the doctor advises)
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