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Thread: Surgery is Monday - very nervous!

  1. #1
    Join Date
    Jan 2007
    Posts
    7

    Surgery is Monday - very nervous!

    Well, my daughter is going in on Monday to have surgery on her back. She was diagnosed with a Idiopathic Scoliosis back in October, and the Dr told us that he was sorry to tell us right off the bat that her curves required surgery. She has a double curve, one at 51 degrees, and the other is 55 degrees (it has since progressed to 60 degrees since October.) Needless to say, we were shocked at the news, because we never saw it coming! Dr Karlin explained (and showed us with the x-rays) that since opposing curves, they somewhat balanced each other out when just looking with the naked eye. It was noticable when she bends down, as her right shoulder "hunches" up quite a bit.

    As the surgery date got closer, I started looking for support to deal with this, and came across this forum. What great advice and support I found in here! Trouble is, I got the impression that my daughter is in for a few months of strictly laying in bed, and being an invalid. Thankfully, Dr. Karlin set me straight last Thursday when we went to Children's Hospital in Boston for all the pre-op stuff. He told me she'd be up and walking a day after surgery, maybe two days later - tops. What a relief! My daughter is a wonderful 12 year old, and very active - and we were so worried about how she was going to deal with her recovery. The fact that she will be able to be up and about, at least in some capacity, is a relief.

    One thing that really worries me, is the fact she loves to dance. She's been going to the same dance studio for 6 years now, and I'm worried about her ability to dance after the surgery. I couldn't get the exact numbers of the vertebrae that are being fused, but he did say that he'll be fusing a some on her upper spine to correct the first curve, and a few on her lower spine as well. Anyone ever have problems with being able to go back to dancing? Obviously we know some of her movements will be restricted - but enough to prohibit her from dancing again? That's her biggest issue - she's actually taking this whole surgery thing better than my wife and I are!

  2. #2
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    For the most part, she should be able to dance, but may have a little trouble with flexibility issues in ballet, and maybe jazz. It really depends how far they fuse. My fusion limited me in moves that require an arched back and anything that required you to bend down toward the toes, like a toe touch (you can see my length of fusion in my sig). In my case, I would never be able to dance like in the nutcracker ballet, but didn't have much trouble in dance class.
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  3. #3
    Join Date
    Jan 2007
    Posts
    65

    Good Luck

    Heather's Dad,

    Good luck with the surgery. We will keep you in our thoughts and prayers. I know how anxious the days ahead can be and like you I turned to this forum and the spinekids forum for help. Everyone here has been a great support and Spencer's surgery went better than I ever could have imagined. Also like you, I remember that when I first started reading posts here I got the same impression that you did - the surgery is big and awful and takes months and years to recover from. Then I realized that I was mostly reading posts from older scoli patients and, as one would expect, older people take longer to heal.

    As I started hearing from parents of kids, and the kids themselves, I realized that kids rebound much quicker. Spencer is about 4 weeks post op now and is doing great. In fact, I would say that he is almost back to his old self again, with only a wince or two when we move him the wrong way.

    There is no doubt about it, it is a big surgery!! But for us at least, the anticipation was way worse than recovery. Hang in there. You'll make it through and before you know it Sarah will be dancing around the house again.

    Keep us posted on how things go!

    Robert
    Last edited by Spencer's Dad; 02-08-2007 at 06:22 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!!

  4. #4
    Join Date
    Dec 2005
    Location
    new jersey
    Posts
    850

    best of luck..

    Heathers dad--My curves as a 14-15 yr old were about 43/45 balanced. So Heather does seem to have a much larger curve. So much good luck w/ the surgery. Kids seem to bounce back from this wonderfully! She'll do fine... I lasted until 46 until I needed surgery. Of course, now a days they can do so much more than back when I was that age! I will keep her & you in my thoughts...all the best..Lynne
    ps...even at my age you can rebound well, I'm 5 months post-op & feel great!!!

    surgery,,this past August2006/Dr. Boachie/Kim@HSS in NYCity
    fused t-11 to L-5 for 95 degree thorocolumbar curve
    http://lynnebackattack.blogspot.com

  5. #5
    Join Date
    Jan 2007
    Posts
    65

    lol

    lol. Lynne you are not of the age I was referring .
    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!!

  6. #6
    Join Date
    Jan 2007
    Posts
    65

    Surgery today?

    Thinking of Heather and her family today during surgery. Keep us posted.
    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
    Jan 2007
    Posts
    7

    Thumbs up Finally - surgery is complete!

    Heather underwent her surgery today, and did VERY well! The doctors and nurses told us that there was very little bleeding, and she never required the 2 units of blood Heather and I had drawn last week. She went into the operating room around 7:30 am (more about that in a minute), and came out around 3:30 in the afternoon. She looked really good - no real puffiness or swelling, and her color was good. I guess a lot of people turn somewhat pale during the surgery, but like I said, she did really well.

    Heather handled everything really well - no real worries up until just before they took her in, then she started to get a little scared, which is to be expected. All in all, I am VERY proud how she handled everything. I, on the other hand, didn't do so well. I was okay for the most part...until it came time to put her under and take her to the operating room. They let one parent go into the room to help her concentrate and relax as she went under. I sat with her, as she held the stuffed gorilla my sister Chery and niece Brittany gave her in one hand, and was holding my hand in her other hand. She got the giggles from the laughing gas, which was really cute, but then her eyes glazed over and the rolled back and she went to sleep. She dropped the gorilla (George), and my hand - and I just lost it. It was embarassing, but I just couldn't help it. I hated seeing my little girl that way - it tore my heart out.

    I can't say enough about how helpful the staff were today at Children's in Boston!They were out every hour and a half to let us know how Heather was doing, and great at making us feel like we were constantly in the loop in reguards to what was going on.

    My wife and I sat with Heather as she was in recovery, then all of went up when she got into her room. She was very tired and groggy, but doing pretty good. She saw everyone (me, my wife, my mother in law, my mother, her brother Steven, and my sister Chery), and gave everyone a kiss before they left. She looked really good, although it was still hard to leave. My wife is spending the night there, and either my mother -in - law or I will stay tomorrow. After that, we'll see if she still wants us there overnight.

    Thank you all for your kind words and thoughts - it's been very helpful.

  8. #8
    Join Date
    May 2005
    Posts
    672
    Those are some long hours waiting for your child to come out of surgery...glad to hear it was successful and uncomplicated. Hope the recovery goes as smoothly. Best wishes -

    Renee

  9. #9
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    So glad to hear your daughter did so well, you have a right to be proud. We haven't set a date yet but expect to soon, my daughter's curves are similar to what Heather's were. It helps me a great deal to hear other success stories. Thanks for posting and I wish your daughter a speedy recovery.

  10. #10
    Join Date
    Jan 2007
    Posts
    65

    Hooooorah Heather!!!!

    We are so glad Heather's surgery went so well today. You all have been in our thoughts and prayers. It is so hard to see these little ones in such vunerable and helpless states. Dont worry about losing it, we all do it a some point. I know I've had my share. But now it is time to celebrate!!!! So here's to a speedy and uneventful recovery, and from Spencer's family to Heather's family a deeply felt virtual "High Five."
    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!!

  11. #11
    Join Date
    Jan 2007
    Posts
    7

    Talking

    Heather is showing more progress today. Yesterday they stopped the continuous Morphine drip, leaving her with just a dose when she pressed a button, and today she's off of it completely. She's on oral meds, OxyContin twice a day, and Oxycodin every 4 hours, but only if she needs it, and she really hasn't taken it that often.

    She was really happy to have her Foley removed this morning, as well as having the dressing on her back replaced with a smaller bandage. She still has the I.V. leads in her hands, but they aren't attached to anything at moment - they just want them available in case she's needs something right away. My guess is that they'll be taken out soon, as well.

    She did some walking today, which was really great! It's only 10 steps to and from the bathroom - but it IS walking, and although it does cause her some pain, it is getting a bit easier on her. And, she IS a little bit taller now, believe it or not. Maybe only an inch, but she and my wife noticed it this morning. Also, I took a look this evening as she was walking, and it does seem like her right shoulder has indeed dropped down a bit since before the surgery.

    She is eating a little - not a whole bunch, but we are working on getting her to eat more. Part of it is her lack of appetite, and part of of is her somewhat dislike of the hospital food. She has no dietary restrictions, so tomorrow may bring some fresh fruit from the cafeteria, and a little something from Subway or McD's.

    We're hoping to have her come home this weekend - hopefully Saturday. She has to be able to stand by herself and take an X-ray, be eating a little more, and be able to do one other thing before they can decide about letting her come home. We'll keep everyone updated.

  12. #12
    Join Date
    Sep 2006
    Posts
    63

    congrats!

    Dear Heather's Dad-

    It lifted my spirits to hear about Heather's surgery and recovery. She sounds like a real trooper. Good wishes to her and all of you.

    Best,

    Sam

  13. #13
    Join Date
    Jan 2007
    Posts
    65

    Movin' right along

    Sounds like Heather is right on track for a great recovery. Tell her everyone here is pulling for her and give her our best wishes. We are thrilled that things are going so well.
    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!!

  14. #14
    Join Date
    Jan 2007
    Posts
    7

    Red face She's home!

    We brought my daughter home yesterday - and she was thrilled to finally get into her own bed again! She still needs help turning over in bed and such, but all in all, she's happy to be home (as are we!)

    The one thing I was not prepared for, is the emotional aspect of things. I'm not sure if it's medications she's on (Oxycontin, Oxycodine, and Valium for the spasms), or the overall emotional toll of everything that has happened to her in a week, but she's done a lot of crying, and has been having really weird nightmares, although the nightmares are not about her back. She said she feels bad that she has to 'bug' me and my wife all the time for help, she wants her old back back, she said she's a freak with a bunch of hardware and will never be normal, plus she feels guilty because everyone is 'paying attention' to her. Obviously we assure her that she's not a bother, and that she's not a freak - but I don't know what else to do for her except be there for her. I'm sure this will all pass, and I'm sure a lot of this is release of all the emotions she's had over this whole ordeal - but I hate seeing my little girl feeling this way.

    On the other hand, physically she's doing really well. Her back looks good and is healing well. She's walking more, we're just trying to get her to get out of bed a little more and sit up for a while.

    Thanks again for all the support and kind words - this forum has been a great shoulder to lean on during this whole process.

  15. #15
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Unhappy valium/spasms

    Valium lasts a long time in the body-one dose lasts up to 3 days in some people. This means that it continuously builds up in the body tissues as long as it's being taken. It is a depressant and indeed can cause tearfullness.

    If cutting back causes pain not relieved by her narcotics- some people get relief from Neurontin or Lyrica which is excellent for nerve pain not touched by opiods.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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