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  1. #16
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    Quote Originally Posted by Beckymk View Post
    As for her reaction -- I think it can be normal. I'm not sure they ever really get how big of a thing this is. Carolyn never thought it was that big of a deal and even though she's already had the surgery STILL doesn't think it was that big of a deal to go through.
    My two daughters were talking about the surgery. I had brought up the issue of someone here asking what it feels like to have a straight spine.

    Savannah said she was glad to have had surgery starting basically from when she woke up from surgery. Now I think she is talking from the perspective of the present where she was corrected from 58* down to 5*, almost completely derotated, and is pain-free. I also think she was relieved to get through it.

    I also think it is possible she doesn't necessarily remember the pain in the hospital, especially in the first few days. Willow and I both saw her then and we were surprised she said she was glad by the very next day. I can well understand why she is very glad now though.

    Willow thinks she still doesn't want the surgery. Of course her 36* - 40* curve is barely noticeable, has virtually no rotation, and she has zero pain... totally different from Savannah's case.

    Savannah said she knows what having a crooked spine and straight spine feel like and cited that as another reason she was very glad to have the surgery. So it must be very different.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #17
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    PurplePixie

    Hello Jules,
    I am saddened to hear of your daughter's scoli diagnosis, yet I am excited for you and her to have a surgery scheduled.We do not have a date so I can not help you with that but I have some questions for you but first I will give you a little history of my daughter. My daughter is 8 and was diagnosed when she was 6 with a 48 degree curve, give or take a few degrees. She has been wearing a TLSO 20 hours a day, approximately. As you can imagine, this has been very difficult for her and myself. We live in Florida so with the heat here the brace is very uncomfortable. As of June her curve is 58. We have another appt. in September. We are considering growth rods as the doctor has recommended because she is so young she has so much growing to do. I don't know if you have heard about the rods but basically it requires a surgery about every 6 months to extend the rods so that we can get the height from her torso. Now, I would like to know if your daughters curve is "ridged". Has the doctor told you that? The reason I am asking is because they tell me that once Emily is "rigid" then it is definitely time for surgery because that means that they really can't get much correction if she is. I love our doc but I also have a million questions. When Em was diagnosed, I too spent many hours researching and posting here but I never really found a 6 or 7 year old with our prognosis. It seems that alot of the kids here are older than my daughter. So....another question, will your daughter have to wear a brace temporarily after the surgery? These are some questions that I am thinking about once Em has surgery. Also, what state are you in? I am sorry for such a long email but as you know, when it comes to our children, there is never enough time to talk about them
    I look forward to hearing from you and oh yea, when is her surgery? Thank you.....
    Betty Jo

  3. #18
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    Dr Barmada

    Hi Jules,

    I am sure your daughter will be in very good hands with Dr Barmada. My daughter loves him, he always says "hi beautiful!" to her. We sought care from Dr Betz at Shriner's Philly because we are interested in VBS surgery (in an effort to avoid fusion--her curve is way below fusion levels currently), which is not available in the Northwest.

    I have had issues with the x-ray techs at the office shielding my daughter's pelvic area incorrectly, so make sure and keep an eye on that. You want the shield on her back (to shield from the primary beam), they want to put it on the tummy (to shield from scatter), so I now insist on both front and back shielding. Judy the nurse can make this happen for you if you tell her what you want.

    Good luck,
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #19
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    @Scolimomof1

    I am so sorry to hear about your daughter. That has to be so frustrating, especially at such a young age. Because of when we caught my daughters bracing was never an option. I can only imagine how hard that has to be, especially in the heat. Hopefully they can come up with an alternative, even the surgery that could eliminate a need for the brace. Though, I am unfamiliar with ones they have to go in and work on every 6 months. Seems like a lot of surgical procedures for anyone, but the ability to keep growing I think would help make it worth it in the end.

    So far the Dr has not said whether she is rigid or not. We do not actually meet with him again until Sept before the surgery. Unless I call or meet with him before it means a lot of those questions still go unanswered for me. I do seem to think he was saying that she was still flexible though, which I gather is a good thing. Still, knowing that both her father and I are tall I wonder what it means for future growth for her. Right now she is just under 5'2" and we are 5'9" and 6'1".

    I too have seen what you mean about the age differences though. Does seem that most are closer to my daughter's age, but I have read some threads both on here and on Spinekids about children closer to your daughters age. I didn't think they became rigid till at or after the end of their growth potential, but am not entirely certain. Hopefully someone else here will know more or you will be able to get more questions answered from her Dr.

    As to whether she has to wear a brace after the surgery, that so far has not come up so I do not think so. I know that Khya would prefer not to have one. That was actually her biggest fear. She hates the thought of a brace, as I am sure most kids do.

    Oh, and her surgery has now been officially scheduled!! The insurance authorization went through and the Dr office let me know Wed that her surgery is on for Sept 23rd. We are both very relieved to finally have it set in writing.


    @Leahdragonfly

    Thank you for the info!! It is wonderful to finally find someone who has experience with her Dr. He does seem quite nice, though we have only met him once. He did come highly recommended and Judy has been wonderful on the phone. I always feel bad keeping her on while I ask questions but she is great about trying to answer them or point me in the right direction. I shall indeed talk to her before Khya has more x-rays as I have noticed before that they only seem to worry about the front area and not the back. Important info to know and not something I was thinking about.

    My apologies to all for being so long winded.


    Mother of Khya, diagnosed 2 weeks ago with a thoracic curve of 61*. Hoping to have surgery this Sept at Emanuel Children's Hospital.

  5. #20
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    Surgery Date Set!!

    Sigh. Deep breath.

    We have finally have our surgery date set. Sept 23rd we go in. Her pre-op is scheduled a bit early apparently, on the 10th of Sept, as her Dr is on vacation the following week. Guess better he gone then than right after her surgery. I made it very clear that he had to be available after her surgery. When my friend has his the Dr then went out of town and things did not go well for us.

    Now I just feel like I am in a holding pattern. 2 months till surgery, it is constantly on my mind, but nothing really we can do. We do have trips coming up that I hope help occupy our time. She is taking a trip with grandma to the Redwoods while I make my annual pilgrimage to the desert. Hoping the trip will help relax both of us before surgery and recovery.

    Little stressed though about scheduling. I get back from my trip the day before pre-op so not a lot of time to prepare. Then we get just under 2 weeks to get things in order. Am still trying to figure out how to get a hold of the school to let them know about her surgery and find out what steps I will need to take to accommodate her for her return, as well as hopefully a tutor. I know I have seen a few threads on here about this, but dies anyone reading now have any tips for dealing with the school? Because her surgery is so soon after start of term it does not give a lot of time for talking to those I need to make arrangements with.

    Am I just stressing myself out over nothing? Some moments it feels like it. Other moments I ask myself why I would put my child through this kind of torture. Believe, I know that in the long run this will be better for her and her body. It is just hard when I know that right now she is not in pain, she is just oddly curved. She just figures - get it over with.

    Sigh...back to breathing. Thank you for listening to me babble. Somedays you just need that.

    Jules


    Mother of Khya, diagnosed 2 weeks ago with a thoracic curve of 61*. Hoping to have surgery this Sept at Emanuel Children's Hospital.

  6. #21
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    schooling

    hi jules
    i was a special ed teacher for years..then a social worker..any child in this situation is entitled to home schooling when necessary..when the child cant come to school...& special services when they can return to school...these protections are part of the federal handicapped protection..& administered in EVERY state...your child will be considered temporarily handicapped until she is better...you can obtain info from special ed services in your school system...it is required by law...just the fact that your child will be out of school awhile will qualify...it is not supposed to be tutoring, but a full fledged teacher who comes to your home...would recommend contacting the school system as soon as possible to let them know what is coming up...& children are required to have individualized educational plans that outline what services they will receive & the time frame as well...

    write any time
    best of luck
    jess

  7. #22
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    Quote Originally Posted by purplepixie View Post
    Now I just feel like I am in a holding pattern. 2 months till surgery, it is constantly on my mind, but nothing really we can do. We do have trips coming up that I hope help occupy our time. She is taking a trip with grandma to the Redwoods while I make my annual pilgrimage to the desert. Hoping the trip will help relax both of us before surgery and recovery.
    We had about a two month ramp up also. We just tried to keep the normal schedule and(or) stay busy, especially in the last few days.

    Little stressed though about scheduling. I get back from my trip the day before pre-op so not a lot of time to prepare.
    What do you have to do to prepare for this? We had a pre-op two days before and there was no prep I recall. Just showed up.

    If you mean questions, I would email those as they occur to your surgeon. Don't wait until that one pre-op day. Our surgeon's asst. gets back to us with his answers usually by the next day.

    Then we get just under 2 weeks to get things in order. Am still trying to figure out how to get a hold of the school to let them know about her surgery and find out what steps I will need to take to accommodate her for her return, as well as hopefully a tutor. I know I have seen a few threads on here about this, but dies anyone reading now have any tips for dealing with the school? Because her surgery is so soon after start of term it does not give a lot of time for talking to those I need to make arrangements with.
    I strongly suggest you contact the school now. Don't wait until the year starts. They are there now, aren't they? I know I called in summer when I thought my one kid was going to need surgery during the school year to change her elective from dance to French. They were there and did it on the phone on my one and only call. The admin people are there doing scheduling, no?

    In re the tutor, I never pursued that because the surgeon's literature said that only kicks in where we live at 4 weeks and most kids are back to school by then. Others have experience with that though.

    Am I just stressing myself out over nothing?
    Absolutely not. Your reactions are very normal.

    Some moments it feels like it. Other moments I ask myself why I would put my child through this kind of torture. Believe, I know that in the long run this will be better for her and her body. It is just hard when I know that right now she is not in pain, she is just oddly curved. She just figures - get it over with.
    If I were you, I would focus on the progression statistics and long term adverse consequences of for a 61* T curve. I don't see a choice just like in the case of my one kid whose curve moved ~5* a month for at least 5 months, was rotating before my eyes, and had growing pain. That's not considered having a choice in my opinion so that made it easier on all of us. She'd be dead by now most likely if she didn't have the surgery. Note to Weiss.

    Sigh...back to breathing. Thank you for listening to me babble. Somedays you just need that.
    Jules, please don't apologize for that. Folks are glad to listen and help.
    Last edited by Pooka1; 07-19-2009 at 02:39 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #23
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    Pooka, I completly understand Savannah. Even though the pain can be intense I was also glad the minute I woke up from anesthetic that I had the surgery. The reason I was so happy after surgery was because even though I was in pain I was able to breathe and that made the pain well worth it. The Dr said my spine was so far in my right lung that it was only expanding 20% when I woke up from surgery it was such an amazing feeling to be able to breathe. I was in pain for as long as I can remember but never said anything because I thought everyone went through pain and just dealt with it so until I was diagnosed during a check at school I kept my pain to myself.

    I was 11 when I had surgery and never thought of it as a big deal it was just something that I had to go do. After the first few months I adjusted to normal life (being able to breathe!) and basically forgot about what I had been through. Over the last 13 years I have had very little pain or physical limitations (except one single yoga pose) so I never really thought of the surgery as a major thing just something that happened thats over now. It wasnt until the last 2 or so years that I really became interested in the details and had the desire to help young people going through what I went through. I was never shy or embarrased about telling people I had surgery and explaining it to them and always felt like they were overreacting when they sounded shocked at what I had been through.

    I truly think for most young people that have this surgery it is more stressful and difficult to deal with for the parents than for the child actually having surgery. At least it was in my situation. Parents are around to protect their children and it can be difficult when they have to hand over control to a Dr and sit by and wait.

  9. #24
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    Pouncy,

    Thanks so much for that post. That makes great sense. I really appreciate folks who have gone through this and can fill parents in like you have. Brad (Qikdraw) is another valuable person for me as he is an adult now and can say what he felt as a child.

    Again, thank you.

    sharon
    Last edited by Pooka1; 07-19-2009 at 02:52 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #25
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    Jules, I had surgery the week before school started and was able to return to school on the 3rd monday after the start of school. My parents contacted the school to let them know what was going on but I don't remember if my assignments were sent to me or if I played catch up when I returned to school. I will ask my parents and see if they remember the process.

  11. #26
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    Quote Originally Posted by Pooka1 View Post
    Pouncy,

    Thanks so mnuch for that post. That makes great sense. I really appreciate folks who have gone through this and can fill parents in like you have. Brad (Qikdraw) is another valuable person for me as he is an adult now and can say what he felt as a child.

    Again, thank you.

    sharon
    No problem at all Pooka! Recently I was out with my mom and saw an older person with obvious severe scoliosis that was wearing a brace and I thanked my mom for getting me the surgery. She looked absolutly shocked and said she never thought I would thank her for it she thought I would always be upset that I was put through that process. It may have been a difficult few months of adjustment after the surgery but I have 0 regrets and am thankful for the Drs that did my surgery and my parents for being supportive of me after the surgery even though they knew I milked it occasionally (I was only 12 and liked attention!).

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