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Thread: Looking to talk with parents of a child with scoliosis and req's surgery

  1. #1
    Join Date
    May 2005
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    Sutton, Ontario, Canada
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    Looking to talk with parents of a child with scoliosis and req's surgery

    Hi, I am the mother of a 3-year old girl who has been recommended to have surgery to reduce the progression of lower lumbar scoliosis. My daughter has a hemivertebrae in her lower lumbar spinal area. She currently is at a 30 degree curvature. She is seeing a head orthopedic surgeon at Sick Kids Hospital in Toronto, Ontario. We discovered this through an x-ray taken of her bowels. The specialist has advised us that we should go ahead and do the fusion surgery to help the progression of it.

    Worried sick, i am terrified to go ahead and agree to the surgery, thinking it may be too traumatic for my daughter Kasanndra. Given all the details of what she will go through my husband and i need to come to a decision regarding the surgery. We can wait and see if it gets any worse but we all feel it would, in the long run, be easier for her now. The doctor assures us that she will require surgery at some point in her life. Would it be better now or later?

    I am looking for anyone who has either been through this, known anyone who has had the surgery, or has any type of advice to help our family make a final decision. I am also willing to get in contact with anyone who is in this very same predicament. I would be grateful for any type of input.

    Thanks, Karey (Desperate)

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
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    Karey,

    Try to slow down a bit and take this one step at a time. I know - easier said than done. You need to decide if the *pros* outweigh the *cons* regarding surgery. Will she have a better outcome? Will the recovery be better? What risks are we taking if we wait? etc. Things like that. Hopefully your surgeon will be able to help you decide these things.

    My son Braydon is 9yrs old. He has had multiple back surgeries and is doing very well. Honestly, the surgery is much easier on the child than the parent. Sometimes knowing too much is harder because we have many more things to worry about. Young children tend to bounce back much faster than adults would do. Remember that surgery should NEVER be taken lightly and should always be the right decision at the right time. Only you (the parents) and the doc can know this.

    I know several children who have had hemivertebraectomy surgery at a young age and are not pre-teens and doing great. If she has only a single hemi in the lumbar area, and there are no underlying causes for future problems, then your decision for surgery sooner than later may be the right one. Feel free to email me if you need someone to talk to. My email is boulderfam@hotmail.com

    Hang in there!
    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
    May 2005
    Location
    Sutton, Ontario, Canada
    Posts
    3
    Thank-You so much for your reply. Since I have been on this site i have been feeling much better about the whole thing. So many people have said the same thing, that she would recover so much faster and it would be so much easier on her now. The only thing i am finding now is that since we have confirmed to go ahead with the surgery i have been getting nightmares about the whole thing. So i totally agree with u that it is harder on the parents. i have written down your e-mail, so i will keep in contact and if i need to talk i will write to you. Again thank-you so much for the support it really helps big time. Was it only your son who had problems? Was it all congenital birth defects or result from something else? My only concern was Kassie and the cast. Did your son ever have the body cast and if so, how did he handle being confined?

    Very Appreciative,
    Karey

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
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    Hi Karey,

    It's very normal for you to have nightmares and scary thoughts about sending your seemingly healthy child off for MAJOR surgery. You may feel better if you can email or call your surgeon and ask specific questions. You need to understand as much as you can so you can make her recovery as smooth as possible.

    <<Was it only your son who had problems?>>

    My son, Braydon, was born with multiple birth defects. Yes, he's had most of the medical care in our house. However, my 19yr old daughter has adolescent idiopathic scoliosis (the typical teenage kind) which is completely unrelated to Braydon's scoliosis.

    <<Was it all congenital birth defects or result from something else?>>

    Yes, Braydon's medical issues and repair surgeries have been a result of birth defects.

    <<Did your son ever have the body cast and if so, how did he handle being confined?>>

    Braydon did not have a cast, but had a TLSO brace after his fusion surgery. He wore it from age 12months to 18months. I know many parents who's kids are in various casts (ISOP cast, Risser cast, spica cast, etc.). Again, the kids adjust much quicker than the parents. I've heard that a beanbag chair is great for their independence. They can mold to the chair, and still play handgames, watch videos, color, etc. It's easier than pillows to prop them up with.

    Feel free to email me anytime. I look forward to hearing more from you. Take care and try to relax a few times a day.
    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
    Mar 2004
    Posts
    1,140
    Karey,

    Here's an interesting article you might enjoy reading ( NOT ! ). Who's your doctor ? I also take my daughter to Sick Kids. Our orthopedist is Dr. Hedden.

    Excision of hemivertebrae in the management of congenital scoliosis involving the thoracic and thoracolumbar spine

    Journal of Bone and Joint Surgery, May 2001 by Deviren, V, Berven, S, Smith, J A, Emami, A, Et al

    We present a study of ten consecutive patients who underwent excision of thoracic or thoracolumbar hemivertebrae for either angular deformity in the coronal plane, or both coronal and sagittal deformity. Vertebral excision was carried out anteriorly alone in two patients. Seven patients had undergone previous posterior spinal fusion. Their mean age at surgery was 13.4 years (6 to 19). The mean follow-up was 78.5 months (20 to 180). The results were evaluated by radiological review of the preoperative, postoperative and most recent follow-up films.

    The mean preoperative coronal curve was 78.20 (30 to 115) and was corrected to 33.9 (7 to 58) postoperatively, a mean correction of 59%. Preoperative coronal decompensation of 35 mm was improved to 11 mm postoperatively. Seven patients had significant coronal decompensation preoperatively, which was corrected to a physiological range postoperatively. There were no major complications and no neurological damage.

    We have shown that resection of thoracic and thoracolumbar hemivertebrae can be performed safely, without undue risk of neurological compromise, in experienced hands.

    J Bone Joint Surg [Br] 2001;83-B:496-500.

    Received 5 September 2000; Accepted 5 December 2000

    The management of spinal deformity caused by a hemivertebra is controversial. The progression of the deformity is unpredictable and requires continuous evaluation. The location of the hemivertebra is an important factor in predicting the need for surgical treatment. When the lesion is in the lower thoracic or thoracolumbar region surgical treatment may be required to prevent deterioration of the curve. The optimum method, however, for the management of a hemivertebra at these levels has yet to be determined.

    Excision of a hemivertebra is a well-established procedure, although its use has been largely limited to the management of anomalies of the lumbar and lumbosacral spine. In a classic description of the aetiology of scoliosis, MacLennan' described the technique of resection of a vertebral body through a posterior approach, followed by immobilisation in a cast. He reported "surprisingly little" correction, however, because of the rigidity of the retained posterior elements. Von Lackum and Smith carried out a combined anterior vertebrectomy and posterior fusion in the management of a fixed lateral deformity, but concluded that the removal of thoracic vertebral bodies was impractical because of the risk of haemorrhage and shock. Wiles 11 reported progressive kyphosis in two patients after excision of a lumbar hemivertebra. Subsequent discussion revealed that follow-up of the earlier experience of Compete 12 and of Von Lackum and Smith9 also demonstrated progressive kyphotic deformity.

    Leatherman and Dickson5 introduced the concept of a two-stage correction using a closing wedge osteotomy with shortening of the spinal column. Their results gave a mean correction of 43% at follow-up, with a transient neurological deficit in two patients.5,6 Holte et al 3 described hemivertebral excision and wedge resection in 37 patients with congenital scoliosis, but reported eight neurological complications; six followed excision at LS or S1, one after excision at T10 and one after excision at T9. Bradford and Boachie-Adjei 2 reported on single-stage, lumbar and lumbosacral hemivertebral excision in seven patients, aged from one to ten years, with a mean correction of 64% and no neurological compromise.

    In spite of these reports showing effective correction with limited neurological hazard after excision of hemivertebrae, the technique has usually been used for lumbar and lumbosacral deformities only. Excision of a hemivertebra above the lumbosacral junction is controversial as deformity at this level has less impact on spinal balance, and the risk of neurological damage has been thought to be very high, especially above the level of the conus medullaris. Hemivertebral excision has a potential advantage over alternative techniques for the surgical management of congenital scoliosis by addressing the deformity directly and allowing immediate, better controlled and more predictable correction, particularly for coronally decompensated patients.4,6,7,10

    Our aim is to review the outcome of hemivertebral excision in the treatment of congenital hermivertebrea of the thoracic and thoracolumbar spine.

    Patients and Methods

    From our database we identified all patients with the diagnosis of congenital spinal deformity and the records of patients who had had thoracic or thoracolumbar hemivertebral excision were reviewed. There were ten patients with a follow-up of at least two years. In seven, the procedure had been carried out for coronal deformity, and in three for both coronal and sagittal malalignment. The excision had been performed anteriorly in two patients, and through a combined approach in the remainder. Before this operation, seven patients had had posterior spinal fusion (Fig. 1). Operative technique. Either a standard thoracic or retroperitoneal thoracoabdominal approach was used according to the level of the hemivertebra. Once the level had been exposed, the discs above and below were excised as far back as the posterior longitudinal ligament. The hemivertebra was then removed with a rongeur and curette, including the base of the existing single pedicle on the convex side. If the hemivertebra was located at the thoracic level, the head of the rib which articulated with the hemivertebra was removed to facilitate exposure and subsequent closure of the space remaining after hemivertebral excision. The space was loosely packed with autologous bone graft.

    As a rule the remainder of the hemivertebra was excised posteriorly including the rest of the pedicle. Correction and stabilisation were carried out posteriorly using segmental instrumentation. The extent of the fusion was based on the preoperative assessment of the magnitude and location of the deformity, the rigidity of the curve and the presence of decompensation.

    Hemivertebral resection was carried out through an isolated anterior approach in two patients (one at Ll and the other at T12). In these cases, in addition to excision of the vertebral body, the convex pedicle, transverse process and other bone remnants were removed entirely through the anterior approach. The posterior elements were not developed substantially; these patients had had no previous surgery to the spine. They were stabilised by anterior instrumentation and fusion only.

    The effectiveness of the surgery was evaluated by a review of the radiographs taken before and after operation and at the most recent follow-up. Absolute measurements were made of the coronal and sagittal curves, trunk shift, coronal decompensation, thoracic kyphosis, and lumbar lordosis. Coronal and sagittal curves were measured according to Cobb's method.14 Trunk shift was determined by relating the central point of the trunk to the central point of the pelvis. Coronal decompensation was defined as displacement of the T1 vertebra by more than 25 nun from the central line of the sacrum. Sagittal decompensation was defined as displacement of the Ti vertebra by more than 40 mm from the posterior superior sacral margin.

    In addition to the radiological analysis, inpatient and outpatient records were reviewed. Data were recorded regarding the age at the time of surgery, the levels fused, the level of the hemivertebra, the type and level of instrumentation, estimated blood loss, complications and any additional surgery.

    Results

    The mean age of the ten patients at the time of surgery was 13 years (6 to 19). The mean follow-up was for 78 months (24 to 180). Seven patients had had previous surgery; five a posterior spinal fusion without instrumentation, one an anterior and posterior spinal fusion, and one a posterior fusion with Harrington fixation. Four patients had excision of two hemivertebrae each (Table I).

    The mean size of the coronal curve was 78deg (36 to 115) before operation, which improved to 34deg (7 to 74) at follow-up, with a mean correction of 59% (45 to 85). The mean compensatory curve was 28deg preoperatively and 11deg at follow-up, giving a correction of 61%. Balance in the coronal plane improved from a mean offset of 36 mm (0 to 60) before operation to 11 mm (0 to 40) at follow-up. The mean trunk shift was 35 mm before operation and 9 mm at follow-up. Balance in both planes improved for all patients except one, in whom there was imbalance in both planes in the cervicothoracic region after operation (Table II). This patient underwent further surgery four years later for progressive deformity
    The mean thoracic kyphosis was 35deg (-25 to 76) before and 42deg (18 to 64) after operation. The mean lumbar lordosis was 65deg (28 to 98) before operation and 52deg (28 to 70) at follow-up. Three patients with congenital thoracolumbar kyphosis improved after surgery. The measurements of 80deg, 50deg and 32deg before operation, improved to 32deg, 18deg and 120, after. Alignment in the sagittal plane was either maintained or improved in all patients.

    Two patients required additional surgery during followup. One had transpedicular subtraction osteotomy for a fixed cervicothoracic congenital deformity and the other removal of the internal fixation because of pain. There were no postoperative neurological complications and no breakages of implants. All patients achieved solid fusion at the latest follow-up.

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    Last edited by Celia; 05-13-2005 at 12:58 PM.

  6. #6
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    1,140
    (continuation from previous page)

    Discussion

    When congenital deformity of the spine causes an imbalance of growth, progression of the deformity is rapid and relentless.1,15-19 The development of a curve is variable depending on the location of the deformity and the growth potential of the bony elements involved. Thoracic and thoracolumbar deformities often have a poor prognosis and usually require surgical intervention. 2,20 There are four basic procedures available to the surgeon treating congenital scoliosis; posterior fusion, combined anterior and posterior fusion, convex growth arrest (anterior and posterior hemiepiphysiodesis), and excision of the hemivertebra. 2,3,15,19,21-25

    Posterior spinal fusion alone has considerable limitations. The goal of posterior surgery is stabilisation in order to prevent further progression rather than correction of the curve. Winter 26 reported 290 patients with congenital scoliosis who had posterior fusion with or without Harrington instrumentation. Correction was limited to 28% in those fused without instrumentation and to 36% in those in whom Harrington implants were used. Instrumented distraction across the concavity was associated with the risk of paraplegia. Deformation of the fusion mass because of continued anterior growth, was observed in 40 patients (14%). Hall et al22 reported a mean correction of the curve of 12% in posterior fusions without instrumentation, improving to 35% with Harrington instrumentation. Slabaugh et alg compared hemivertebral excision with posterior fusion in situ for lumbosacral hemivertebrae and found better correction of the curve in the group who had excision.

    Combined anterior and posterior fusion offers several advantages over posterior fusion. More substantial correction can be achieved by discectomies, the potential for a crankshaft effect is eliminated, and the occurrence of pseudarthrosis is reduced. Since this technique does not address the wedge deformity directly, the entire measured curve must be encompassed in the fusion, including normal segments.

    Convex epiphysiodesis of the spine was designed to arrest convex growth while allowing concave growth to correct the deformity. The surgery must take place when sufficient spinal growth remains, usually in children less than five years of age.15,21,23,27,28 Concave growth is, however, unpredictable and kyphosis in the region of the anomaly may develop as growth of the posterior elements continues. It is necessary to perform convex hemiepiphysiodesis across the entire measured curve, often including a normal segment above and below, in order to achieve a satisfactory improvement. The results of this procedure have been variable and unpredictable. Roaf29 described unilateral hemiepiphysiodesis in patients with spinal deformity, and proposed that further growth would correct the deformity. He achieved correction of more than 200 in 23% of patients, but less than 10 in 40%. Andrew and Piggott 20 demonstrated mixed early results in a series of 13 patients treated by convex epiphysiodesis. Long-term follow-up of 33 patients from the same centre showed correction of the curve in 23 (70%), with better results in patients treated at a young age.27 Winter and Moe 24 reported early results in ten children treated by convex hemiepiphysiodesis, with only two demonstrating significant correction at follow-up at two years. Long-term follow-up of a similar group of 13 patients showed arrest of the curve in seven patients (54%) and improvement of more than 5 in five (38%).28

    In contrast to the above techniques, excision of the hemivertebra addresses the deformity directly and allows reliable correction immediately. It is well established in the management of lumbosacral curves, which are responsible for pelvic obliquity, apparent leg-length discrepancy, and truncal listing. Correction cannot be achieved reliably by other methods. In the thoracic and thoracolumbar spine, less imbalance is produced but even so, there is often considerable cosmetic deformity and continued spinal growth may cause the curves to progress. Hemivertebral excision allows more complete correction of the curve in these patients, producing improved cosmetic results and restoration of balance. Our mean rate of correction of the major curve in these ten patients was 59%, similar to previously reported results for hemivertebral excision, and much superior to the radiological results reported for hemiepiphysiodesis, anterior and posterior fusion, and posterior fusion alone.

    Some authors have questioned the safety of such a procedure in the thoracic and thoracolumbar spine because of the risk of kyphosis and neurological deficit above the conus. 16 Our results suggest that hemivertebral excision involving the thoracic and thoracolumbar spine is not associated with an increased risk of kyphosis or neurological complications. In ten consecutive cases of hemivertebral excision did not encounter permanent neurological deficit or progressive kyphosis. Based on our experience, the correction and balancing of congenital thoracic or thoracolumbar curves are more effectively achieved by resection of the hemivertebra than by alternative treatments for patients with significant, rigid curves.

  7. #7
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    I don't have alot of input for you, but I noticed that you were worried about the trauma that your daughter would be under. She has a young age factor going for her. I recently had a sleepover and my daughters friend (unknown to me) had spina bifida when she was little. She has a small scar on her back.
    She is rough and tumble and had me so nervous but after talking to her mom she told me it was the best thing she did was not waiting. She was a year when they did the surgery. They fused the whole area. Just letiing you know that it isn't as traumatizing to them as it would be to us to see them that way. I was 16 and can't rememebr the pain when I had surgery. Good Luck.


    Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

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