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  1. #1
    Join Date
    Jan 2007
    Posts
    65

    More surgery for Spencer

    Hi all,

    Been a while since I've been here, but I see the forum is as helpful as ever. What a great place to share our anxieties, fears, frustrations and good news with others that understand them. I wish a forum like this existed for Spencer's disease (PMD Luekodystrophy)...sigh.

    Anyway, thought I would give you an update on Spencer for those who may be interested. Spencer's fusion was a little more than a year ago and so the docs now want to go in an remove the portion of his rod that pulled through the vertebrae and is protruding from his lower back. Hopefully this won't be a big deal since it is just hardware removal, and also hopefully it makes him more comfortable when lying on his back. Still, it is another surgery and I feel very bad for the little guy.

    Otherwise, Spencer remains about the same. He continues to have GI issues and he went through a really bad bout with the flu this year (two trips to the ER) even though he had a flu shot. I will be very glad when the high temp of the day is above 60 degrees.

    Thanks again to all of you who helped us so much a year ago, and keep up the good work.

    Robert
    Last edited by Spencer's Dad; 03-10-2008 at 03:59 PM.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  2. #2
    Join Date
    May 2005
    Posts
    672
    Hi Robert,

    Nice to hear from you, and thanks for the update on Spencer. Sorry to hear he has to go through surgery again, hopefully it won't be very long or invasive. Will keep him in prayers for successful surgery and quick recovery. Glad he is over the flu bug, it was really bad this year, wasn't it!? Any date on his surgery yet? Please keep us posted -

    Take care,
    Renee

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Robert,

    Ditto what Renee said about letting us know the surgery date. That's exactly what I was going to ask you to do.

    I really hope this surgery will help him and ease his discomfort.

    By the way, we've missed you!

    Please keep us posted. I will keep Spencer in my prayers.
    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/

  4. #4
    Join Date
    Jan 2007
    Posts
    65

    Surgery Date

    Aahh, good to hear from you Renee and Maria. Hope things are well with you. The surgery is tomorrow (3-11), though I don't know the time yet. Nor do I know if it's outpatient or if we will stay overnight. Thanks for your thoughtfulness.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  5. #5
    Join Date
    Sep 2005
    Posts
    877
    Robert,

    I am really sorry he has to go through another surgery. Any idea why that happened. It's so difficult to let our guards down. I really feel for you. I'm sure everything will be fine and we all really care. So please keep us posted. Think Spring when all of our kids can stop getting sick so much.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  6. #6
    Join Date
    Jan 2007
    Posts
    65

    slipped stitch

    Melissa,

    Yes we know what happened. It actually happened during Spencer's spinal fusion surgery. His vertebrae are very fragile and when Dr. D'Astous was placing the last stitch the vertebrae was so thin that the stitch pulled through the bone. There was not enough bone to try another stitch and the hole in the rod could not be lined up with another vertebrae so Dr. D'Astous left it the way it was. This is probably the reason he could not get Spencer's curve any better than about 22 degrees. We have known about it all along and figured it would need to come out at some point since it is just under the skin and would very likely cause an unhealing pressure sore if left in. So tomorrow we take care of it.

    We finally got our surgery time (6:00am) and found out we stay in the hospital for at least two nights....long sigh. Well, I guess we are pretty used to that by now. In fact, sometimes I think I actually sleep better in the hospital than at home...LOL. How sad is that?
    Last edited by Spencer's Dad; 03-11-2008 at 02:32 AM.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

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