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Thread: Another newbie here

  1. #1
    Join Date
    Jan 2009
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    Indiana
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    Another newbie here

    Hi all, my daughter just turned 13 & she's scheduled for fusion on 2/11/09 at childrens mem. in chicago. Anyone out there with any experiences there? She has been in a tlso brace for 2yrs, but her curves have progressed. I kind of had a feeling we were headed into surgery, but it still hits hard when the dr. says ITS TIME. Just browsing through the threads, I have the same concerns as everyone else. Everybody here is so supportive and helpful with passing on their experiences! I'm curious if most surgeries require a blood transfusion? If so, how many units were given? It doesn't seem like there should be much bleeding, and I'm not sure about the dr.'s recycling? her own blood?? We don't have a match for her to donate ourselves, and my daughter is too light to donate her own, which leads me to something else I haven't really heard anyone mention. With the kids, is there much weight loss? My daughter is "skinnyminney" & I'm worried about her becoming too weak. She weighs 88 now. Also, I saw a thread posted on a Dr. who doesn't cut the muscles. Our Dr. did tell me that he does not cut the muscles. I believe he said they separate them to get access?? I am told she will not be able to lift her hands above her head for a little while, though. Any input would be appreciated!

  2. #2
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
    126
    Hi!

    We are having surgery this month also. I can't help much with your questions about during surgery since we haven't made it there yet. However, we have talked extensively with the doctor about the blood thing and we just decided to use the blood bank if necessary. I was concerned at first but after talking to him about all that is involved for a family member to donate, I just decided to put that in Gods hand. I believe our blood banks are very safe these days and also my daughter will be using donor bone because to harvest hers it leaves another site to heal and more pain and a small extra chance for infection. I wish she could have given her own blood but she is too skinny also. We actually tried to fatten her up the last month or so with milkshakes and ensure and when she went for pre-op she had lost a pound I can just think about food and gain weight. I am worried about the weight thing too but her doctor assures me she will be okay.. They let them eat whatever they want once they start eating. They will use the machine to recycle her blood but he said she would probably still need some at some point but didn't say how much. I guess they don't know. Well, Good Luck with the surgery and keep us posted.

    smileyskl

  3. #3
    Join Date
    Jan 2006
    Location
    PA
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    778
    Hi,

    Like your daughters, my daughter is a skinnyminny as well. Jamie is 4 years post-op and doing great! She did lose a few pounds after her surgery, but had no problem gaining it back. While in the hospital, they aren't given anything to eat until the doctor hears good stomach sounds. Sometimes it is several days before they eat. You'll find that sometimes the oral pain meds upset their stomach. This along with the lack of activity, the kids just aren't hungry so they don't eat a lot and therefore lose some weight. Sometimes the pain meds cause constipation, which doesn't help with the eating situation. Encourage them to drink plenty of water (helps with the constipation). Offer them plenty of healthy foods, often. Milkshakes and smoothies are always a good choice.

    Jamie's doctor wanted her to donate 3 or 4 units of blood, but she was only able to donate 2. Her doctor used both units in the OR and she didn't need anymore after that. I'm not sure, but I would imagine the amount of blood loss would probably depend on the length of fusion and the length of surgery. Jamie's fusion and surgery were both very long.

    My advise to you both would be to try not to sweat the small stuff. I know, nothing involved in facing this surgery is small, but try not to worry if you have to use the bloodbank. Concentrate on keeping yourself and you children healthy. You need to keep yourself physically strong and healthy to take care of your children after surgery.

    Good luck.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #4
    Join Date
    Jan 2009
    Location
    Indiana
    Posts
    43
    Hi. It is encouraging knowing there is someone out there going /gone through the same thing. Smileyskl your situation sounds sooooo familiar. There were some issues of "inconvenience" when it came time for family /friends to donate, so we are going to use the blood bank, if needed. I do feel confident in the safety these days. The dr. is going to use an artificial material to grow bone with my daughter. I am glad they don't graft her bone, due to the xtra pain, infection risk, etc. By the way, her fusion is a long one. They will fuse from T4 to L4. I am sure everything will go well. I am keeping a positive! Good Luck smileyskl on your upcoming surgery also! we can compare notes. Mary Lou, thanks for the advice! I'm glad to hear your daughter is well! I try to keep telling myself to chill and not worry. I'm doing pretty good at this point. Actually, Kaitlyn is taking all of this in extremely well! She surprised me! She is also on the autism spectrum, so anxiety is always high for her. Anything she has to face up to or encounter is always a challenge. But like I said, she is being a trooper! I am proud of her! We are trying very hard to stay healthy: Vitamins, fruit, veggies and my constant nagging to wash hands! Thanks again, I'll keep you posted.
    Tracy

  5. #5
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
    126
    Tracy,

    My daughter is 11 and her name is Katelyn also. She wore a TLSO brace for about 6 months and it slowed down but by no means stopped her progression. Her curves are at 52 now top and bottom. She has an S curve. We have only known about her scoliosis for a little over a year. Her curve more than doubled in less than a year while wearing the brace 23 hours a day. I would love to hear more about your daughter and compare surgery notes. It looks like our surgery will be in the next two weeks. We may be having surgery at the same time. My daughter is extremely prone to panic attacks but for some reason she has not had one over the surgery yet. I think she is focusing all her energies on though because she can't seem to deal with the little everyday things as well right now. As far as the surgery though, she is a trooper also. I think my stress level is much higher than hers on the surgery issue. Everone on this forum is great and very supportive. So many have already been in our shoes and are very helpful and have lots of good information to share. Good Luck with the surgery and keep us posted.

    smileyskl
    Last edited by smileyskl; 01-25-2009 at 06:55 PM.

  6. #6
    Join Date
    Jan 2009
    Location
    Eagan, Minnesota
    Posts
    16
    I was able to donate my own blood for my surgery. I was not one of the "skinnyminnys" LOL! Which it sounds like was a good thing but I never realized it. Anyway, after my surgery (which was also a long one-top to bottom), my mom let me get a total make-over. I got my hair cut and colored, and get some new clothes! It was a really nice treat and while it didn't make it worth it, I felt much more confident going back to school afterwards. If you decide to do new clothes though-and you will probably have to-wait until after the surgery...I grew 4 inches on the table!

    Also, the kids at school had soooo many questions. I ended up doing a little presentation to the health classes and that stopped a lot of questions and counted as my PhyEd credit for the rest of the year since I couldn't participate.

    Best of luck! I am sure everything will go great!

  7. #7
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
    126
    Hi Heather,

    I was told Katelyn would probably be a couple of inches taller at least after the surgery. Thats a great idea to do a shopping trip after shes up and feeling better. Just curious, how long after your fusion did you feel like being out?? I know everyones recovery is different but I am usually talking to parents and not the person who actually had the surgery. I would like to hear from someone who experienced it - the patients perspective. Also, what was your pre-op curve if you don't mind me asking?

    smileyskl

  8. #8
    Join Date
    Jan 2009
    Location
    Eagan, Minnesota
    Posts
    16
    Feel free to ask away!

    While in the brace my curves were upper 20s to upper 30s. Within 1 year of not wearing the brace my curves were 50s (top), 80s (middle) 60s (bottom). My curves are all now in the teens and have been for the past 14 years. I have not had any complications other than slight rotation on the lower part of my back that is not fused (the tailbone mostly) which has stopped.

    I didn't go to school for 1 month after my surgery and then finished the year off going every other day (My surgery was in April). The school was great and had a tutor come to the house and do everything. I am trying to think how long before I really wanted to do anything and I'm having a hard time with that. I was in the hospital 5 days and started walking right away-like that day! But when I got home I used to go for short walks everyday-they say that is key. Within 2 weeks of being home I was walking 1 mile a day at a slow speed. I was OK riding in cars and going places, it was better than being home. I just got very tired very easily.

    A couple of things we learned that they don't really talk about-at least not when I had mine:

    1.) Showering-I had to sit down for awhile to shower because I would get tired so fast. My mom would tape saran wrap over my back so I wouldn't get it wet. It worked great!!!

    2.) I noticed that my back cracked A LOT when I got home. It totally freaked me and my mom out. We found out it is normal for that to happen.

    3.) Coming off the pain killers was terrible! I would dream I was jumping and jump in bed which ended up really hurting, but I don't think there is anything you can do about that.

    4.) We put an extra box spring under my matress and that really helped with getting in and out of bed.


    5.) My grandma wrote into one of the columns in the newspaper and said I was having the surgery and asked people to send cards to wish me well and a speedy recovery. I still have every single card I got. It was amazing how many people wrote notes and sent cards to wish me well. If you have some kind of write in column I totally recommend doing that. Its the simple words from strangers that are nice to hear-even though you hear them from your parents the whole time.

    And seriously, please feel free to ask any questions you want! I am more than happy to tell you what ever!

  9. #9
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
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    Thanks Heather, that is sweet of you to share. So, I looked at your profile and saw that your surgery was in seventh grade. Were you 13 then?? Do you have any pain today from the other rotation?? What was your correction afterward?? Thanks so much for answering my crazy questions but knowing things to expect somehow helps. Thanks

    smiley

  10. #10
    Join Date
    Jan 2009
    Location
    Indiana
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    Heather! Holy cow! 4 inches! Like smileyskl, Kaitlyn's dr. said about 2 in. Kaitlyn would probably love that. For me, however, I think I'm going to have to start wearing heels now. She will probably be taller than me after surgery. (maybe we'll take a before & after picture of us) Kaitlyns curves started out at T 24 & L42, at age 10. She outgrew her 1st tlso brace in a year and got her 2nd one. She's had some growth spurts, but nothing too crazy until the last 6mos. Her curves are now T58 & L70+. I was wondering if your balance was off before surgery, and if you notice if its better? Kaitlyn does not have good balance & she has her head cocked to one side most of the time. Thanks for the input, your little tid bits are very helpful.

  11. #11
    Join Date
    Jan 2009
    Location
    Eagan, Minnesota
    Posts
    16
    I do have some pain now but nothing that isn't bearable. I am not big into taking medication and get by fine without anything. On bad days I take Tylenol or something. Its no biggie though. I do think I have some arthritis in my back though...when the weather changes (and it does A LOT in Minnesota) I really notice a difference.

    Sometimes I feel like my lower back is catching on one side. I have found that just laying on my back and pulling my knees up and rolling from side to side really get rid of that and seem to put everything back in place.

    The only thing I really noticed were that it felt like 1 leg was shorter than the other and that was mostly after surgery. The doctor checked and they were the same it just felt different since I was carrying my body differently.

    I don't really notice feeling off balance but I was just diagnosed with MS so that is probably the cause of my clumsiness!

    Oh, I have a brother and a sister and we all took a pic together before my surgery and after my surgery. It was really fun to see the difference. My Mom also took A LOT of pics when I was in the hospital. I was mad at first that she was taking a pic of me standing for the first time with the rods but looking back at them I am glad she did. It is nice to see how far I have come!

    I was thinking one other thing you might want to look into is some kind of stretch mark lotion or something. I got stretch marks from growing so fast on the table... They have great stuff out there. One of them is called Bio Oil-you can get it at places like Walgreens.

    When are the surgeries scheduled for?

  12. #12
    Join Date
    Jan 2009
    Location
    Indiana
    Posts
    43
    Hi Heather, thanks for the info! Yeah, its pretty cold here too in Indiana, I keep thinking spring! Kaitlyn hates the pictures too, but I try to tell her she'll appreciate it later. I'll let her know you were glad your mom took them. Her surgery is scheduled for 2/11/09 at childrens mem. in Chicago. Btw, I'm sorry to here of your dx of ms. Does anyone in your family have a history of it? My mother-in law has it & she has done remarkably well. She was diagnosed about 23yrs ago. She is 73yrs old now. There is so much they can do now. She gets those beta seron injections- so keep a chin up. Gotta go, Tracy

  13. #13
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
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    I posted another comment last night and I don't know where it went or what happened to it If it shows up then just know I am not purposely repeating myself.

    Tracy,
    my Katelyn is off balance some too. She does hold her head to the side sometimes but when she notices that she is doing it, she will straighten it so I know she CAN hold it straight. I just think it is more comfortable and feels more natural that way since her spine is crooked that way. I figure we will have to make it a point to practice holding it straight afterwards.
    In case your interested, I let Katelyn watch a vidieo journeal on YouTube under - Torries Scoliosis Surgery. It is not gross or anything. It is just a picture journal set to music and words but it is really neat to see the experience. It helped us a lot and we even e-mailed Torie. She seems like a really sweet girl. Her surgery was about 7 months ago. Watching another girl experience the surgery helped put some of Katelyns worries to rest.

    Heather,
    Thanks for all of your input and I also know someone with MS and they are being effectively treated also. The medical technology today is so amazing. Keep your spirits up and remember when you help others (like you are doing now) you are helping yourself. We appreciate it and keep us posted please. I will pray for you!

    Sharon

  14. #14
    Join Date
    Jan 2009
    Posts
    19

    Chicago area experience

    Hi - Since you're in the Chicago area, I thought I'd share this article as published in a newspaper near you:

    European Method Helps Darien Girl Avoid Surgery
    http://www.pioneerlocal.com/burrridg...709-s1.article

    Best wishes to your daughter and your family

  15. #15
    Join Date
    May 2007
    Posts
    40
    My daughter did lose about 10 lbs. as a result of surgery - she was 95 to start and went down to 85. It took about 2-3 months for her to re-gain the weight - she's always eated like a bird. I wish I ate that way! LOL.

    She did end up with 4 units of blood transfused from the blood bank. She was too light to donate her own and like others have said, it would have been a major inconvenience to donate our own for her. I have faith that the blood banks are now very well screened so no concerns there.

    Her surgeon shaved off bone from her vertabrae to use for the fusion so they didn't have to use any ribs or hip bones or any donated or synthetic material to aid in the fusion.

    Karen
    ******************

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