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Thread: Newbie! Daughter 11 - surgery

  1. #1
    Join Date
    Mar 2008
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    Newbie! Daughter 11 - surgery

    Wow! Finally igot my account activated. I had to make another account to get in! lol! Well I have been reading for a while now and finally I can post!! so here goes my story!
    My 11 year old daughter was very recently diagnosed with scoliosis. She was screened at school, and then we went to the pediatrician who did x-rays, and referred us to a specialist from Tulane. Well we saw the specalist 2 Thursdays ago. Originally the ped. said that the x-rays showed a 37 degree curve. So we went to the appt. expecting ot be braced. Well after the spec. did the cobb angle on it, her spine is actually almost an s shape and it has a 49 degree curve on the top and 37 degree curve on the bottom. Sorry I do nto know all the specific terms. So we were very shocked to say the least.
    He looked at a previous x-ray and said that last year she barely had a 20 degree curve so it has progressed very fast. Upon examining her he saw a spot on her stomach that he questioned and asked if she had any other spots. I said she has a darker one on her back. He looked at it, and got a very different look on his face. He started asking all kinds of questions and looking at her x-rays very closely. He pointed out a gap in the bone at the very base of her spine. he said that along with the marks that she has is leading him to be believe that there is more to this than just scoliosis. So he scheduled an MRI that we did this past Thursday. They had ot put her to sleep for this. We get the reults this thursday. Well in the meantime he said that she definately needs surgery asap!! WOW!!! I just did not know what to think at that time. He said that it is not really just an option at this time b/c of how fast it is progressing. So her surgery is scheduled for MAy 12th. He told us to go home research it all. Write down any questions and bring them when we go back this thursday. At that time we will also discuss all the aspects of the surgery. He said he knows that it was alot to digest, so he did not want ot go into to much detail at the time.
    So within a matter of three weeks (barely) we are diagnosed and scheduled to have surgery!!!
    I am scared to death, and so is she! She has been so depressed since we have found out! She has always been a healthy active child who has been in karate and soccer. something that she will have to give up! Its just all to much for me to process.
    I have learned soooooooo much from reading this board. I look forward ot hearing even more from you guys!!!
    Sorry for all the rambling...I think I got in all the important details....lol!!!!
    So any feedback, suggestions, anything appreciated!!!!!

  2. #2
    Join Date
    Jan 2006
    Posts
    513
    Well, bless your heart, that is a lot to digest!

    Do you know what levels he plans to fuse?

    I have several friends that have had children undergo this surgery in the past couple of years. All are doing great, even the ones that had extensive fusions of the thoracic and lumbar spine. There is life after fusion.

    My e-mail is cherylplinder@hotmail.com. My phone number is 601-681-8047. If you want someone to talk to, call anytime. I can't imagine your shock and dismay! You need support and information.

    My child has not undergone surgery yet, but she has almost zero chance of avoiding it. Her curves were at 51/40 in January. She is in a Cheneau Brace.

    Just a big ole Cyberhug! ((((((((((((((HUGS)))))))))))))))))
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  3. #3
    Join Date
    Apr 2007
    Location
    Sydney - Australia
    Posts
    166
    Hi there Newbie and welcome aboard!!!!

    Yes - I know where you are - TERRIFIED!!!! I've just come from there over the last 18 months and can so relate to your story.

    My daughter is 13 and 7 weeks post-op. Rather than bore all the regulars on here with all the details of Elysia's surgery and details etc - just go onto our Blog - (bottom of my signature here) and you can read all about it. Press on older posts at the bottom of the page to go back to the beginning of the story. I think your daughter will enjoy (and get some comfort) seeing the pictures of Elysia and how happy she is in the photo's just a few days after surgery.

    This is important - NO TWO SURGERIES OR SURGEONS ARE THE SAME!!!! Assume NOTHING!!!!! I got caught out a couple of times by assuming things would be done a certain way and it didn't turn out as I was expecting.

    Feel free to email me with any questions!!!! I won't be on this forum forever (yayyyyy say the regulars who are sick of my ravings) just doing my "TOUR OF DUTY" - LOL - to help others.

    Cheers
    Del
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  4. #4
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Welcome to the forum. My heart goes out to you. What a shock you and your daughter have had. I hope you find the forum helpful and comforting....I will be eternally grateful for the advice and support I have received here.

    Please let us know the MRI results. Did the doctor say what he thought was causing the scoliosis?

    Our daughter hasn't had surgery yet although it looks like we are heading there really soon. She has a spina bifida occulta - the outer part of one of her vertebrae is not completely closed.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  5. #5
    Join Date
    Oct 2005
    Posts
    178
    Hey Ruth, Has your daughter been through her growth spurt? The reason I ask is that you mentioned the SBO. From what I've read about it, most kids with SBO are asymptomatic. In fact, many of those who do have it don't find out until they begin to have symptoms, or if there has been some other reason to x-ray the spine such as scoliosis or an injury. It's taking me a bit to get there, but are you familiar with tethered cord syndrome? This is seen most commonly in SBO and is where symptoms begin to show. Ironically, this is when most who have it, find out that they have SBO. The tethered cord is usually something that shows up during the rapid growth spurt of adolescence. If you want to know more, "Google it". Good luck.

  6. #6
    Join Date
    Apr 2007
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    Sydney - Australia
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    Well I did PM Ruth about SBO - but since you have also mentioned it Slice,
    I will just put this out there that it showed up on Elysia's x-ray as well. We were told that it was nothing to worry about and that a large percentage of the population had it and were never even aware unless they had a Spine X-ray.

    I've never mentioned this before in any of my posts because I was told it was nothing!!!! Who knows! But she definately did not have a tethered cord problem.

    Sorry - have to edit this - yes - just googled again, 23% of population have this but small percentage of the population 2% do have other problems from this. So maybe Slice is onto something. Apolgoies!

    cherio
    Del
    Last edited by Aussiemum; 04-01-2008 at 01:47 AM.
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  7. #7
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Slice:

    Would tethered cord show up on MRI?

    Esme has had an MRI (without dye). No tethered cord was noted BUT they didn't mention the spina bifida occulta either - it was the doctor we went to for a second opinion (Dr. Jarvis) at CHEO last August who noticed it and told us.

    I have been thinking lately that Esme is experiencing some unidentified neurological problems. Presently her hands get sore really quickly when she writes, mouses, draws, bakes, etc. We thought this was due to her speed Rubik's cubing too much about a month ago but I would have thought she'd be over that by now and she isn't. Also all the hard braces made her arms go numb and tingly. For sure something to discuss with Dr. Jarvis at the end of the month........

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  8. #8
    Join Date
    Oct 2005
    Posts
    178
    I don't know enough about it to tell you but I wouldn't think so. You see, that any effects of a spinal cord defect or injury are going to be below that point. From what I've read about SB, and SBO, the defect can be anywhere along the spine, but the vast majority of them are in the lumbar region or lower. If you had said that the numbness and weakness, were in her legs, I'd say it was a fairly good possibility. (Remember that I am no medical expert, I'm only passing on information that I've seen elsewhere.) One of the other things that can show up with SBO is trouble with bladder and/or bowel control. The problems that are happening in her arms and hands are something that you might want to have investigated with a neurologist.

  9. #9
    Join Date
    Oct 2007
    Location
    Indiana
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    1,978
    Dear Kjungrl2-- First, welcome to the forum. Then, big hugs for all you're going through! That's an awful lot for anyone to have to handle! Keep us posted with what happens at your appointment on Thursday-- and anything in between, too, of course. I imagine your emotions are playing lots of games with you right now. I think I can safely say all of us have been scared to death about our surgeries... but hopefully you can get some strength from the fact that we have gone through it and it's ok now. The time leading up to the surgery can really be harder to deal with than the actual surgery and recovery, if that makes any sense. There are a lot of parents on the forum that will understand you and provide support, because they've been down similar roads. Try to just take some deep breaths and know you can get through this, because you can. It's just a really difficult time!!! Hang in there!
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  10. #10
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,297
    Well that is quite the whirlwind!

    We had our diagnosis in late August and my one daughter had her fusion and the other daughter got her brace seven months later. So that was fast but not as fast as your experience. The one who was fused had a very fast curve progression like you daughter did.

    I know surgery hits you like a brick. But I focused on how safe/successful the operation is and how it is generally considered a "cure" at least in the short and medium term. So it's a hard road but well worth going down.

    I also focus on just being relieved and grateful there is surgery like this. Lots of folks worked very hard for years to get to this point and it is to their great credit. I marvel at it sometimes.

    Best of luck.

    sharon

  11. #11
    Join Date
    Oct 2003
    Location
    Utah
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    1,010
    Welcome KJUNGRL2. You will see many families in various stages of treatment for scoliosis. Lots of different experiences. Lots of options now for kids. Your daughter is very young still. Please consider getting another option (likely out of state) before allowing fusion surgery. Fusion is such a final option. She still has some growth left in her spine, so hopefully you can figure out the best of the many options there are for her.

    My Braydon has had two tethered cord (TC) release surgeries. His TC issues are very mild, neurosurgically speaking. His was due to a fatty filum. Many regular radiologists miss this finding. If anyone has a child who has unexplained neurologic symptoms (ie, occasional or constant changes in bladder/bowel habits, occasional or constant low back pain, occasional leg/foot pain/weakness/tingling, a dimple/hairy patch/lump, etc over the sacrum, etc.) the MR images need to be read by a neuro-radiologist and/or a pediatric neurosurgeon. You can see that symptoms can vary greatly in each patient. Braydon's fatty filum was missed the first time. Three years later he had another MRI scan because of progressive symptoms. This time a neuro-radiologist read the images and compared to the first scan. No change from the first scan, but indeed he had a fatty filum that was causing the spinal cord to tether. We had an appt. with a ped. neurosurgeon soon after who confirmed this, and TC release surgery was scheduled 4 weeks later. I know of several/many children who have MRIs that are misread initially. If you (the parent) have any reservations/concerns about your child, please contact a ped. neurosurgeon to review the actual scan (not just the radiologist's report). Peace of mind means a whole lot in this case.

    KJUNGRL2 - let us know the results of the MRI. Hopefully there is nothing else going on besides the scoliosis. Yes, her scoliosis has had a rapid progression, but this is not yet an emergency. Please consider having another opinion, or at least asking the local PEDIATRIC orthopedic surgeons about options besides fusion. There are several options out there, including adjustable rods that grow as she grows (VEPTR, growing rods, etc.) and even stapling the convex side of the curve to stop the progression of the curving. Good luck and know we are sending our very best your way.
    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/

  12. #12
    Join Date
    Mar 2008
    Posts
    50
    Wow guys! Thanks so much for the kind words of support. This is so difficult to go through! I am having a really hard time dealing with all this! It makes it even harder that she is taking it so hard and so depressed. I try to be so strong for her, but then Ifall apart. I can't hold it together. Sheesh!
    I am so scared about Thursday. I think I am going to call the dr.'s office and see if Skye has to be at the appointmrnt. She does not want to know all the details of the surgery. I would rather her only know what she needs to know. She is already having a hard enough time.

  13. #13
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Maybe Skye would find some comfort talking on-line with children her own age at www.spinekids.com. My daughter goes on there and it has helped her a lot.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  14. #14
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by Carmell
    Yes, her scoliosis has had a rapid progression, but this is not yet an emergency. Please consider having another opinion, or at least asking the local PEDIATRIC orthopedic surgeons about options besides fusion. There are several options out there, including adjustable rods that grow as she grows (VEPTR, growing rods, etc.) and even stapling the convex side of the curve to stop the progression of the curving.
    I agree with what Carmell said - even with a curve in the high 40's, I would get more than one opinion before going ahead with fusion at any age, but particularly since she is only 11. I'm NOT saying that fusion won't turn out to be the best option in the end, maybe it will, maybe it won't - but there are other options as Carmell mentioned and it can't hurt to get a second or third opinion.

    Depending on where you live, I'm sure you can get some excellent recommendations for pediatric orthopedic surgeons on this forum.

    Best of luck to you!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  15. #15
    Join Date
    Oct 2007
    Location
    Maryland
    Posts
    49
    Quote Originally Posted by rtremb
    Maybe Skye would find some comfort talking on-line with children her own age at www.spinekids.com. My daughter goes on there and it has helped her a lot.

    Ruth
    Ruth is right. My daughter started with Spinekids about 3 weeks ago. It was good for her to realize there are many children with a similar condition. The kids have been so welcoming to her. She can ask questions from the others and she thinks it's cool to write kids in the other countries. It offers a unique support system for the children, like this site has been for us.

    Brenda

    P.S. It seems really safe too. No personal info.
    Daughter 17.5 (diagnosed @ 12 yrs) in Sept 2007 AIS
    Oct 2007: T-20, L-20 [160 cm]
    Mar 2008: T-24, L-24 [163 cm], started Cheneau brace
    May 2008: T-16, L-7 (in-brace) [164.2 cm]
    Oct 2008: T-23, L-15 (out-of-brace) [167 cm]
    Feb 2009: T-20, L-18 (in-brace) 2nd brace
    Jun 2009: T-20, L-16 (in-brace) [172.2 cm]
    Dec 2009: T-33, L-16 (out-of-brace) [173.8 cm]
    Apr 2010: T-25, L-12 (in-brace) [175.3 cm] 3rd brace
    Mar 2011: T31, L20 (out) [176.2]
    Jul 2012: T31, L20 (out) [177.2]

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