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Thread: More surgery for Spencer

  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
    1,758
    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 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  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!!

  7. #7
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Big hugs to you and Spencer. Hopefully surgery is well underway now, or even done? Many prayers that this will resolve the problem and Spencer will heal well. Did Dr. D say if the fusion has healed well? Good and solid? If so, the rod removal should heal well and he will go on his merry way.

    In January, I checked out your website to see if there had been any updates on Spencer. He has been on my mind for a couple of months. I was wondering how things were going. Glad to hear he made it through the flu - but how frightening for all of you. The rest of this week doesn't look like good weather. Hopefully soon spring will be here. Take care and I'll watch for an update after surgery.
    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
    Jan 2007
    Posts
    65

    Good news

    Hey all,

    Surgery went well! The rod came out easily and the docs said we could go home today. Yea!! (Apparently they think we know how to handle post op issues well enough on our own that we don't have to stay in the hospital). Spencer is doing well and has only complained a little from pain.

    Thanks once again, everyone, for being there at a stressful time for us. Its just nice to know that someone who knows a little bit about how hard this can be is there to sooth my anxieties.

    Carmell, so good to hear from you again. As always, if you ever get a chance to stop by on one of your many visits south, please don't hesitate.

    Robert
    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!!

  9. #9
    Join Date
    May 2005
    Posts
    672
    Hi Robert,

    Thanks for the update, glad to hear everything went well. Even better that you get to go home today! I'm sure Spencer will rest more easily at home in familiar surroundings...hopefully you will too, lol! hope all continues to go well with his recovery.

    Take care,
    Renee

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,758
    Wow, that was the kind of news I was waiting to hear!!!! I'm SOOO glad it went so smoothly.

    Try not to be a stranger

    Hugs to Spencer,
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

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