Results 1 to 11 of 11

Thread: New

  1. #1
    Join Date
    Sep 2004
    Location
    Calgary, Alberta, Canada
    Posts
    11

    New

    Hi All,

    I haven't had a chance to go through the archives yet. I just realized how serious my Son's scoliosis is this morning when my Doctor's office faxed me the radiology report.

    He's three years old and I have been concerned about his right shoulder since birth. His doctor shrugged it off until his three-year check-up.

    The radiology report notes "Multiple segmentation and fusion anomalies seen in the cervical and upper thoracic spine. There is resultant scoliosis measuring about 44 degrees convex right at the cervicothoracic junction down to T7."

    Apart from the vertebral fusion, accompanying rib anomalies and scoliosis he noted "The lungs are clear. Heart and mediastinum are normal. Soft tissues are otherwise normal."

    I'm wondering how many congenital cases here are caused by vertebral fusion, and what sort of treatment the Ortho Doc has recommended?

    Thanks,

    Erica
    (aka worried Mom in Calgary)

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Erica,

    Welcome to the list. My son was born with severe congenital scoliosis caused by "multiple hemivertebrae with contralateral failure of segmentation". That basically means there are about 8 vertebrae that did not form correctly in utero. One side of the vertebrae is underdeveloped, while the other side is overgrown or "butterflied". The unsegmented parts are where the individual vertebrae did not separate - they are fused together.

    I hope your son is seeing a PEDIATRIC orthopedist who is experienced in treating congenital scoliosis patients. There are a couple of orthos in your area (or close, I think) who I've heard parents say good things about. They are Dr. Tredwell at Vancouver BC Children's hospital, and Dr. Heddon in Toronto.

    Has your son had a full spine MRI? I would think the docs would want to make sure there are not spinal cord or soft tissue problems that may contribute or complicate his bone malformations.

    Has he had a renal (kidney) checkup? Sometimes (1 in 4) children with congenital scoliosis have problems with the structure of their kidneys, because the kidneys and spine develop around the same time in fetal growth.

    Please know you are not alone. I hope you can find the answers you need to give him the best medical care possible. I look forward to hearing from you soon.
    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
    Sep 2004
    Location
    Calgary, Alberta, Canada
    Posts
    11
    Hi Carmell,

    My Son's Doctor has sent his stuff to a pediatric othopedist at the Alberta Children's Hospital By the name of Dr. Harder. So far he's just had the x-rays. His vetebrae t1 through t5, t6 and t7 and verebrae inferior to c3 show mulitple fusion anomalies. He's not had an MRI or other diagnostic work done. Would kidney problems be apparent without testing? Would problems be visible on fetal ultrasound? (Incidentally, at 18 weeks pregnant I was told during a routine ultrasound that my Son might have something wrong with his spine. At a subsequent ultrasound at the Maternal & Fetal Medicine Clinic I was told that he was fine). He was not developmentally delayed at all, is potty trained etc. Also, with fusion anomalies, is it possible to segment the vertebrae? I look forward to your reply.

    Warmest Regards,

    Erica
    (Whose Stepmom's name is Carmel )

  4. #4
    Join Date
    May 2004
    Location
    Calgary, Alberta, Canada
    Posts
    29
    Hi Erica,
    My name is Cathy, and I have a 3 year old son, who has scoliosis(not congenital though). We live in Calgary, and have been seeing Dr. Harder since my son was 8 months old. If you would like to talk to me about the doctor, or anything else, please e-mail me! cathybartsch@shaw.ca
    Hope to hear from you soon!!

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Erica,

    Interesting info about your prenatal ultrasounds... at my routine 19 week OB ultrasound, they saw that the baby's spine was not straight, there was a hole in the baby's heart, some dilation of the left kidney, a right clubfoot and a single vessel umbilical cord. That's a lot for so early in the pregnancy. Most babies with congenita malformations go undiagnosed in utero.

    Kidney problems are often discovered only after serious infections or other problems occur. It's important to have at least a renal ultrasound done (not invasive and fairly routine) to check the size and position of the kidneys. If all looks good, then no need for further testing, unless there are reasons to test.

    Unless the child has other medical problems or reasons to be developmentally delayed, our kids are not. Braydon is very active, physically and mentally. He is not academically delayed, and I'm sure with a little effort, he could excell in his school work. He loves to ride his bike, climb on the playground equipment, collect bugs and do everything other 9yr old boys love to do.

    I know Cathy will be a good person to get local information. She is a great friend! I wish you and your little one the very best.
    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/

  6. #6
    Join Date
    Sep 2004
    Location
    Calgary, Alberta, Canada
    Posts
    11
    Hi Carmell,

    After reading a little bit this morning, I've decided I will indeed call the Doctor this morning and ask for an U/S requisition. I mentioned the possibility of kidney problems last week to him and it seemed like a non-issue. However, if something *could* be wrong I need to know now. I also read that 40% of cases have nomalies of spinal cord development. How do they check that, MRI? And, do you think I have any reason to consider this a possibility in Jaxson's case?

    TIA,

    Erica

  7. #7
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Erica,

    With bone malformations, that puts Jaxson at a higher risk of having a spinal cord problem. Sometimes if there is a spinal cord problem, you won't have outward signs or symptoms. However, most the time there are subtle symptoms which may include occasional leg/foot pain, occasional fatigue, occasional lower back pain, occasional changes in bladder and/or bowel habits, etc.

    Yes, an MRI is the only way to confirm a spinal cord issue. Braydon had an MRI at 10 months old prior to having fusion surgery. We were told the MRI was normal. However, at age 3-1/2, he began having symptoms like I described above. Another MRI revealed that he did indeed have a tethered spinal cord (the spinal cord itself was normal, but it was tethered at the base). Technically he should have had the tethered cord release surgery as an infant, but we didn't know. Thankfully we had a good neurosurgeon who knew what to look for. He had surgery to release the tethered cord just before his 4th birthday. He did great. No obvious permanent nerve damage.

    Good luck with the renal scan and deciding on an MRI. Keep us posted.
    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/

  8. #8
    Join Date
    Sep 2004
    Location
    Calgary, Alberta, Canada
    Posts
    11
    Good Morning Carmell et al,

    I've booked an appointment (for tomorrow morning) to see Jaxson's family doctor and discuss these statistics with him. I didn't ask him last week if he had good reason to believe I shouldn't be concerned about other abnormalities and afterall, he did admit to us he had never seen this before. My husband tried gently to dissuade me but if I don't pursue things like this I'll make myself sick I know. I haven't heard from the Specialist yet, I feel like I should have. So here I sit at work just wondering and worrying about what the h*ll will happen next, UGH!

    Erica

  9. #9
    Join Date
    Sep 2004
    Location
    Calgary, Alberta, Canada
    Posts
    11
    Ok, we're good to go. The renal ultrasound was requested by the specialist and is booked for October 27th, the specialist will see us November 24th (in the meantime my GP will let us know the u/s results). I *think* the 8+ week wait is a relief. I hope after reviewing the case it doesn't look too bad. I'm sure if it was urgent, the appointment would be sooner. Thanks Carmell for your good advice! I'll be in touch to let you know what's happening.

    Have a fabulous weekend!

    Erica

  10. #10
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Just a quick note to say HI and I'm so glad the docs are helping you out with the extra testing. Peace of mind means a WHOLE lot. Keep me posted on the appointments. We'll keep our fingers crossed that all is well!
    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/

  11. #11
    Join Date
    Sep 2004
    Location
    Calgary, Alberta, Canada
    Posts
    11
    We had the renal ultrasound this morning. The tech gave us 'non-verbal' confirmation that everything looked good. Now we wait another month to see Dr. Harder...

    My GP will have the results of the u/s in a few days so he'll call me to let me know for sure.

    TTFN

    Erica

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •