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Thread: New scoliosis diagnosis and surgery to come

  1. #1
    Join Date
    Jun 2008

    Unhappy New scoliosis diagnosis and surgery to come

    My son is 5 years old and we just found out he has scoliosis. He also has NF2 (neurofibromatosis 2) which is linked to scoliosis. He has a 35 - 40 degree curve. We saw Dr. Emans at Children's Hospital Boston and he said that Connor is going to need surgery. They are going to put growth rods in. This is a 4 hours surgery and a 4-5 day hospital stay. Then every 6 months he will have to go back for another surgery to adjust the rods.

    Has anyone been thru this with themselves or their kids???? I am very concerned. I am a nurse and sometimes it is not good to be in the field and know so much.
    Becky and mother of 5 year old Connor who was diagnosed with a 38 degree curve. Connor also has Neurofibromatosis 2

  2. #2
    Join Date
    Mar 2005
    east coast
    How did he get dx'ed with NF2 so early? Most ppl don't find out until they are close to their twenties. Just curious.. I have NF1 and all the ppl I've 'met' online w/ NF2 didn't find out until they had hearing loss well past their childhood.

    I heard good things about CHB (in terms of NF and in general). Good Luck to you!
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35

  3. #3
    Join Date
    Sep 2006
    Jamestown, NY

    Wink Matthew

    My son is also 5 y/o and also was diagnosed at 9 mo. of age. He has Ehlers-Danlos Syndrome. With casting and bracing, his curve has progressed to an 85' curve. He started with a 37' curve when he was first diagnosed. Matt is having surgery on July 3rd. My heart goes out to you and wish you the best of luck.

    Sue & Matt

  4. #4
    Join Date
    Nov 2007
    I don't know much about your son's diagnosis, however my son has been to Dr. EMans a couple of times and I think very highly of him. I have also heard that he is extremely knowledgable with regards to the type of rod surgery your son may be undergoing.
    I emailed Carmell from the forums here & I am sure she will be able to provide you some very helpful/ firsthand info.
    Take care,
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 Ė 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

  5. #5
    Join Date
    Aug 2004
    Hi Becky,

    I, too, hope that Carmell weighs in on this. I do know that Dr. Emans is considered one of the best in the country. That being said, there is a lot to think about here. Thankfully, there are quite a few options out there today for these kids (VEPTR, VBS, etc.) - and while not every option is a good fit for every child, they've come a long way in the treatment of scoliosis in a younger child. Perhaps you should even get more than one opinion (not to take ANYTHING away from Dr. Emans - sometimes it's just a matter of putting the parent's mind at ease).

    Best of luck to you,
    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)

  6. #6
    Join Date
    Oct 2003
    Hi Becky and Connor - Welcome.

    I know hearing that your very young child needs major surgery is very frightening. Nothing about this is easy. However, you know that without some kind of surgical intervention, Connor's quality of life will be affected. I know another boy who is now 14yrs old who was diagnosed with NF (not sure if its 1 or 2) a few years ago. He had VEPTR rods placed at age 10yrs old to support his curved spine. The VEPTR rods have helped him be stable and grow at a more even rate. I would ask Dr. Emans which type of rod he is specifically recommending. Then, I would ask him his reasoning for not choosing another. I also agree that a second opinion is a good idea. It helps give you peace of mind, if nothing else. Dr. Emans is a wonderfully kind man. He cares about his patients and their families. You are in great hands with him. He will not be offended or have an ego problem if you go elsewhere for another opinion, just for peace of mind.

    My Braydon had VEPTR rods placed when he was 6yrs old. I would be happy to share our VEPTR experience with you. Best wishes and feel free to email me if you'd like.
    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.

  7. #7
    Join Date
    Sep 2007
    Hi Becky,

    Sorry to hear about your son. I understand how you feel. My son was diagnosed with scoliosis at age 10. He has been followed and is now 13. His scoliosis has had a big jump this year and we are being told surgery is needed. Dr. Emans is my sonís currently doctor and we think very highly of him. His name is on Boston Magazine Top Docs

    Best of luck to your son. Feel free to send me a private message if you'd like. We live around Boston area. You'll find most people on this forum to be wonderful and supportive.

    Take care,


  8. #8
    Join Date
    Jun 2008

    It all right.

    Dont worry. I know it can be hard to let go of your child and to put it through that, but I know by experience that it is hard, but making the decision to do it in the long run helps not only you but your child. Think about all of the positive info. you know and push away the bad. Talking to the surgeon is a great way to alleviate fears and other questions or concerns you have.

    I will pray for you, Nicole

  9. #9
    Join Date
    Aug 2010

    Scoliosis and NF1

    Hi Becky,

    We live in California. My son Oliver who is 6 years old and has Neurofibromatosis Type 1 (NF1) was just recently diagnosed with scoliosis (T6-T10=31 degrees). He had a spine/head MRI in August 2010 to look for tumors and that's how the scoliosis was discovered. My husband and I are devastated and afraid. Even though he is a physician and I am a pediatric nurse, we feel overwhelmed. Oliver is our angel and I am sad that he has to go through this. His doctor is Dr. Todd Lincoln with Kaiser Oakland. He doesn't think a brace will help but we still asked for one so that we feel we are doing everything. Oliver will be wearing a Boston brace. He will have an x-ray in 4 months to see how the curve is progressing. Dr. Lincoln said that because of NF1 Oliver may not be a good candidate for VBS. NF1 bones are weaker and does not heal as well. If surgery is needed at this young age, he recommends growing rods.

    We are fortunate we live near Shriner's in Sacramento. We are waiting to see a doctor there to get a second opinion. I just don't like the high probability of complications from growing rods and the fact that he has to go back every 6 months for more surgery. I am hoping that Oliver can have VBS because it seems a better alternative.

    I cry every day. I'm at the computer researching every night. My advice:

    1. Research as much as you can.
    2. Get a second or third opinion.
    3. Take care of yourself because your child needs you.

    Please let me know what you find out and I will do likewise. If anyone can share their wisdom I will be grateful. My family is in crisis mode and any help will be appreciated.


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