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Thread: surgery in January

  1. #1
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    surgery in January

    I am so glad I have found this web site. My daughter is twelve and she has worn a brace since she was 8 months old. We always knew she would have surgery, but when we went to the doctor this past Wednesday and they told us we kind of went into shock. My daughter is really upset. Having problems sleeping, depressed. So am I. From everything I have read on here, it seems that once you get through the recovery, the surgery is worth it. Both her curves are around 60 degrees. She is having two rods put in. To what degree will she be able to move once she has recovered? She is a swimmer and from what I have read swimming is something she will be able to continue. But do you just get used to not being able to bend? Her torso is quit a bit shorter in comparison to her long legs. How much should she expect to gain in inches? I wanted her to come on and talk to someone but she refuses. Maybe it is just too new to her. Any information would be helpful. Thanks. Jenn

  2. #2
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    Hi Jenn,
    Surgery is a VERY scary thing for both your daughter and you. My mom knows because she never left my side. Remember to tell your daughter it will all be worth it in the long run. By talking to someone who has already had the surgery she will feel a little better. Thats why Im here...if she needs someone to talk to my info is in my profile. About swimming, I first swam about 6 months after my surgery. Im sure she can swim before that but I was being careful. It does feel very different at first because she's not as bendable. Take it easy at first, glide through the water and walk around in it to get used to it. When I swam I would get tired fast and sometimes a little sore. But the more she does it the better she'll get used to it. Just take it slow and dont rush anything. I hope all goes well.
    ~Tonya

  3. #3
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    Hi Jenn -

    My 11 year old daughter had the surgery in July and was back in the water 4 weeks later. But only wearing a flotation belt which held her upright so she could just move her legs back and forth. But even just that little bit sure helped her feel a little "back to normal." At her 10 week post-op visit the doctor gave her the go-ahead to swim - just freestyle and some breaststroke so far. No jumping, diving or flip turns for quite some time yet. She is working out 3 times a week and doing great. It is soooooo good for their backs.

    By the way - I just thought this would be a good place to share this - yesterday my daughter went through a metal detector for the first time at one of the museums in Washington and did not set it off. We had been wondering about that....!!!! (I was already to pull out the little card the doctor gave us which says she has metal implants. shucks.)

    Good luck!

    Judy

  4. #4
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    Thanks Judy.
    How is your daughter doing now? How much was her curve corrected? I had never even thought about metal detectors... that's interesting. Did she get through the recovery period ok?
    Jenn

  5. #5
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    Hi Jenn,

    I wish you and your daughter the very best, especially with the anxiety and the unknowns you have about surgery. The mental stress is often as hard or harder than the physical recovery. Hopefully once you get some answers, you will feel more confident and reassured about the surgery.

    Does your daughter have congenital scoliosis (one or more malformed vertebrae)? or is her scoliosis idiopathic (meaning the bone structure is normal, but curved)?

    Has she had a pulminary function test to see if her lungs have a good volume/capacity? If she has more growth left (which I'm assuming she does because she is only 12) then I would ask questions about how much the surgery will affect the size of her trunk/body since she's already compromised in her trunk. Fusing multiple vertebrae before she reaches skeletal maturity will make her trunk shorter than "normal". Ask if there are any other options besides fusion.

    In another post you mentioned her legs fall asleep. Has she had a spine MRI done lately? Does she have occasional changes in her bladder or bowel habits? Does she have occasional pain (for no apparent reason) in her legs or feet? These would all be questions a neurosurgeon would ask, ruling out a tethered spinal cord. I would strongly suggest she have a full spine MRI prior to anyone touching her surgically.

    I'd be happy to share my son's surgical experience with you. He has two vertical rods placed to keep his spine stabilized and to keep his chest expanded. He has surgery every 6 months to expand the rods to allow his body to grow to the maximum amount. He is now 8yrs old. Surgery should be considered with much reseach and many questions. Hopefully your surgeon is well-versed in treating children with scoliosis issues, including addressing the potential lung function (a new thought process for orthopedists).

    My best!
    Carmell
    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/

  6. #6
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    Hello Carmell,

    Thanks for all your great information. She is scheduled for an MRI on the 17. She does get up frequently to use the bathroom and does how quit a bit of back pain. No she has not had a pulminary function test...that is something I am writing down for our next visit. Her scoliosis is idiopathic. She actually was scheduled to have surgery for the first time when she was one years old and we went for a second opinion and suggested a different brace. It kept us from surgery until this point. The surgeon says that if we don't do the surgery soon, the curve is progressing so strongly, that it would be a big mistake. He doesn't even want us to wait until Spring break. How does your son cope with the pain? Can he "feel" the rods?
    Any information is very helpful.
    Jenn

  7. #7
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    Hi Jenn,

    I'm glad your daughter is having an MRI. I suggest you call a neuroSURGEON and ask if they can read the films, not just read the radiologist's findings. That way you'll know for sure everything is covered neurologically. Let us know how that goes.

    Braydon isn't in pain (one of my BIGGEST fears from even before he was born). If you saw him today, you would have NO CLUE what his little body looks like on the inside, or what he's been through (and continues to go through). He says he can't feel the rods, but I can SEE the rods under his skin. He is very lean, so there isn't much fat-pad between the rods and his skin.

    Braydon's rods are not positioned along the spine. He has one rod (a chestwall rod) that is under his shoulderblade that is keeping the right side of his chest expanded, giving his lung optimal space to grow and function. The other rod is supporting his spine. It is attached to an upper rib, behind his collarbone and at the bottom to his L1 vertebrae.

    Braydon rides his bike, plays soccer, hangs on the monkey bars in the playground, loves to dig in the dirt, and do things other kids his age do. The ONLY physical restrictions he has is no trampoline (but then again, I don't know any orthopedist who LIKES trampolines) and no full-contact sports like football. He can ski, do horseback riding, and pretty much anything he wants to do.

    Braydon was born with congenital scoliosis. At birth, his congenital curve measured 50 degrees (a thoracic curve, the most common). By 9 months old, his thoracic curve progressed to 75 degrees. At that time, the latest technology had not been perfected for kids like this. At 11 months old, he had fusion only surgery from T5-L1. His congenital curve has been stable at about 65 degrees since. At age 3-1/2, we discovered he had a tethered spinal cord. After that release surgery, he did well for about 6 months. Then he developed a lower compensatory curve which was actually his body trying to compensate and balance itself of the severe congenital curve. I have pics of his xrays before and after his surgery on my webpage if you are interested.

    http://pages.ivillage.com/carmellb/myfamily

    My suggestion to you (even tho I know you've been dealing with this for most of your daughter's life) is to make sure you understand the implications and the benefits and risks associated with any surgery. Make sure this is the right decision for her, at the right time. Braydon's fusion wouldn't have been my first choice, but at the time, we had no other choice. His rod implant surgery was done at the right time for him to gain optimal use of his lungs and prevent future oxygen dependency (which we know would have happened without some type of surgical intervention). Braydon's lung function has improved over the past two years from less than 50% capacity to 71% capacity as of Sept. 2003. Pretty significant. It's amazing how your body grows and thrives when it oxygenates well. He went from 32 pounds at age 6 (prior to his implantation surgery) to 43 pounds in September at age 8. His height has gone from 36 inches to 45 inches in those two years. We are very pleased with the outcome so far. We also had to have the mentality that if this procedure (the Titanium Rib Project/VEPTR device) didn't work, then there was always the traditional fusion surgery to fall back on, if needed. You can't undo a fusion.

    Sorry for rambling. I sincerely wish you the best. I look forward to hearing how your daughter is doing and what the next step will be after the MRI.
    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
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    ohio
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    wow

    this is paige and i went to your website and i had no idea of what your family has gone through. tell brandon he looks great and u truely cant tell has any problems. will my scars look like his?oh man sorry im alittle shook up from the pics and love that baby by the bathtub!!
    Last edited by jenn; 11-04-2003 at 08:48 PM.
    Jenn

  9. #9
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    Hi Paige,

    You can ask the surgeon if he/she will close the incision UNDER the skin. This will help the scars fade and look almost invisible. The incisions that have stitches (sutures) or staples on the outside that have to be removed by the doctor leave larger and more visible scars.

    I also know it's a little easier on Braydon and his emotional well being that he's never known anything different. He doesn't know what it's like to have a straight back, or legs that match, or a foot that works like the other one, etc. This is the only body he's had, so it's not different for him. He just takes life in stride. Sure, surgery and going to the hospital are frightening and scary, but he understands that he wouldn't be this healthy without the surgeons and the great care he has gotten. For you, being older, I'm sure it is very hard to understand WHY this needs to happen, and how everything will turn out.

    There are always risks, but if your surgeon has lots of experience with scoliosis, you should be just fine. Keep asking questions. Talk to your mom. Talk to anyone you feel comfortable with. The more I talk about Braydon (on boards like this) the more confident I am that he's getting the right care.

    I'd be happy to share anything about our experience with you. There are sometimes questions you don't even know you should be asking. Things like, "will you have a catheter for a time during your recovery?" "will you be in the PICU or a regular room?" "what pain medications do they recommend?" stuff like that. You need to remember things like don't take and aspirin or ibuprofen (Motrin) products for 2 weeks before the surgery. This can make you bleed more than usual. Ask things about donating your own blood, in case they need it. Or have a family or friend donate.

    Lots of things to think about... Hopefully I haven't made you more nervous than you already are. You are doing GREAT! Keep up the great work! I'd even email you my phone number if you want to talk on the phone. I've done that several times too.

    My best to you!
    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/

  10. #10
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    Sep 2003
    Location
    Maryland
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    Hi Jenn -

    Yes, my daughter made it through the recovery period really well. We have all been pleased with how well she did with it. She does still have a residual curve, above and below her fused segment, which is still cause for concern, especially the lower curve. She is currently back in her brace 12-14 hours/day, wearing a lift in one shoe, and having physical therapy twice a week, all in the hope of nudgeing the lower vertebrae into alignment with the fused part. Frankly, I don't see much improvement. Last time she was xrayed it didn't show improvement either. She goes back to her surgeon two weeks from today. She is only 11 and still growing. We hope another surgery is not in her future, but doctor hasn't ruled it out. Her fused curve went from 60 degrees to 22 degrees. Lower, unfused section, straightened from 47 to 35 with the surgery.

    My daughter's name is Jennie. Since she is about your daughter's age, and also because they have swimming in common, I thought maybe they would like to exchange emails. Jennie doesn't like to talk about her scoliosis very much, and has never shown any interest in these message boards. I noticed your daughter has posted a couple of messages, and so figured she would like to talk more. Maybe she could send an email to my daughter, and then hopefully my daughter will respond, since it would be someone her own age, in her same "boat," asking her directly for support. She can email us at "coolspring@aol.com" and ask her to address it to Jennie. I think Jennie would respond to her.

    I wish you luck. It seemed overwhelming to me at first, but it all turned out ok - except that I am suprised we are still dealing with the issue of residual curvature, but I guess this is life, after all. Silly me - I thought surgery would be the end of it!

    Judy

  11. #11
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    Oct 2003
    Location
    ohio
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    Talking

    hi judy!!!
    i would be happy to talk to your duater to try to get her to come to this site. but i was wondering why my mom was on this site so much so i got on and i love it. i dont have aol but i have yahoo! my email is goodgirl1012004 id love to talk to someone that is my age. hope to see a email from u!!!
    xoxo,
    paige
    Jenn

  12. #12
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    Oct 2003
    Location
    ohio
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    Judy,
    That is so funny that your daughter doesn't want to come on to this forum because I tried to get Paige to look at it for the longest time. Way before I started posting messages. I think she just tried to denie the issue that she had scoliosis. She doesn't want to seem "different" from every other kid. I finally started posting after we found out about the surgery. One day I was looking at a response and I called her over. She didn't know what I was looking at and when she saw it was from another girl that had been through surgery, well now she won't stay off the computer. Paige loves swimming. She has been on a swim team for years. I am so glad this is what her love is, now that I know she can continue it after recovery. Never was the issue brought up to me that there might be another surgery after this one. I wish all the luck to your daughter. I am hoping since Paige is for the most part, had all your growth spurts, she will not have a change in her curve down the road. But I have no idea. One of the things I am worried about is the risks involved with doing surgery so close to the spine. Has anyone ever talked about that issue?
    Jenn

  13. #13
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    Sep 2003
    Location
    Maryland
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    Hi Jenn -

    In answer to your concern about spinal surgery and the fear of damaging the spinal cord... I had those same concerns too, but by the morning of my daughter's surgery those fears had been put to rest. Just like there was one doctor who only monitored anesthesia, there was also one doctor who only monitored her spinal cord, by computer. I had heard about the "wake up test" (where they bring the patient out of the anesthesia long enough to see if she can move her toes) and wondered if they would do that - but with the advanced means of monitoring her spinal cord during surgery, there was no longer any need for that. This was the case where we were - Georgetown University in Washington. I'm sure Paige's surgeon will put your mind to rest on this issue also.

    By the way, the doctors at Georgetown allowed me in the operating room to hold Jennie's hand while they put her to sleep. They were really very considerate of my anxiety. I was very grateful to them for that.

    Judy

  14. #14
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    That makes me feel better. I am also glad you told me they let you in while she fell asleep. I will ask if I can do the same. When Paige was around 4 she had to have a muscle biopsy done which she was put to sleep for. As they took her back she was crying and felt SO horrible. I am sure I will be a mess the day of this surgery also. Thanks for the info.
    Jenn

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