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Thread: New to Forum.

  1. #1
    Join Date
    Jul 2009
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    13

    New to Forum.

    I am new to this site, as well to this diagnosis. First of all I want to thank everyone here for the time they have put in to their posts. Having only had my daughter diagnosed 2 weeks ago I have devoted my days and nights to research. It was when I got here that I finally found info and people who understood what was racing through my mind. The knowledge I have gained so far has been invaluable to me.

    My daughter's story so far. A month ago I got a message from her Dad saying he thought something was wrong with her back. It was only then that I learned he had scoliosis and had worn a brace when he was younger. when my daughter came home I looked at her back and discovered that indeed it did not look right. Shoulder and ribs sticking out, curve to the spine and her waist shifted to the side. I wondered how I could miss it - but with an 11 yo posture and clothes always on it had escaped me.

    So, knowing something was not right - off to the Drs. As soon as she saw my daughters back it was off for an x-ray. I knew watching the x-ray come up that it was not good. Still, we expected a brace, something my child was not looking forward to. The next day her DR called, and told me that it as 58* and she needed to see the specialist, she also hinted at surgery but I still was thinking brace.

    We saw the specialist the following Tuesday where he said the curve was 61* and that it would get worse. Surgery was the only treatment option. I thought I would faint. He did say we could take some time, he encouraged doing research and deciding when it would be right for us. My daughter wanted it done sooner rather than later. I agree.

    This was a week ago. We have a tentative date, a great DR, and a wonderful hospital. Still, I feel as though I am suffocating. My child does not seem to care much yet. She talks a bit to me with general worries; when will I eat and do I have to wear a hospital gown. The big stuff.

    Me? I am terrified, like most others were. This is my baby and they want to cut her open. Add to that I do not have a great relationship with hospitals. Two years ago I took my best friend in for surgery, and due to a rare complication and infection, I did not get to bring him home. This plays heavily in my mind. I cannot do that again. I know the likelihood is beyond tiny, but still it is the recurring nightmare.

    My apologies that this was so long. Figured I would get the bulk of it out in one sitting. I am hoping by being here I can get the feedback to help get both of us through this. To have people to talk to who do understand what our day is like. I am lucky though, I have a friend here who has had scoliosis for over 50 years amongst other things and he is doing great. He is a great shoulder for me. Still, things have changed, and this is my baby. If I could wave the wand and make her better, it would be done.

    I wish I had specific questions, and I am sure I will. for now just want to meet people.

    Thanks,
    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.

  2. #2
    Join Date
    Mar 2009
    Location
    USA
    Posts
    55
    Jules!
    Welcome to the site!!!
    I can't help you very much...so I hope someone else can!! Best of luck with what ever choice you make. :hugs:
    Diagnosed in '06'
    Wore TLSO brace for 18 mo.
    Upper curve 40 degrees; lower 35 degrees
    Surgery in March '08' (T6 - T11)
    Rods for 7 vertabraes; 3 fused
    Still have lumbar curve (T12 - L4) of now, 33 degrees
    I have osteoarthritis, 3 bulging discs, stenosis, fast progressing lordosis, vertebrea twisting (vertebreas almost on side) all in lumbar spine. Will most likely have another surgery to extend rods and fusion. :'(

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Hi Jules

    Welcome. This is a great site with some great people. If you have any questions, just ask away. If they are dumb questions, thats ok, there is quite a bit to absorb.....

    Here are some questions for your spine surgeon.

    https://www.infusebonegraft.com/ques...r_surgeon.html
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Every day I read this forum I also wish I could wave a magic wand. For folks who have children with scoliosis and those in terrible pain.

    You and your daughter will do fine, it will be over before you know it and you can both get on with your lives without this horrible fear and worry you have right now. At least you've got a good doctor and hospital sorted. Don't let any past experiences (which are very rare) scare you any further.

    All the very best, and please keep us posted on how you (both!) go.

    Jen
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  5. #5
    Join Date
    Jul 2009
    Posts
    13

    Thank you

    I so appreciate the welcome and the encouraging comments.

    Each day is anew moment and more deep breaths. I count my blessings as there are indeed worse things we could be facing. And of course new lessons to be learned.

    One of the questions I have is in regards to blood donation. My daughters DR does not have the children donate their own blood as he prefers them to be as strong as possible, and I agree. I instead have chosen to try directed donation. Amazingly I already have at least 6 donors who want to give blood, some who do not know my daughter but their relatives do!! I was shocked to tears. What I am curious about is how easy or difficult any of you found this? I know many I have read did get to donate their own but am assuming someone has done directed donor before. I am just curious if anyone knows what the process is like? My donors for the most part have their donor card which I believe makes things a bit easier.

    I am also curious about the reaction of my daughter. She does not seem concerned about this so far. It is still early I know, but other than those few details of food and such, the enormity or what have does not seem to phase her. Is this normal? I do give her info. I want her to be involved and know what is happening. She needs to have some control here. I just wonder if I am just missing how she is really feeling.

    Thanks for all the input. So very much needed and appreciated.

    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. #6
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Jules,

    Hi. You sound like you are doing a very good job managing this situation.

    In the run-up to my daughter's surgery, she didn't want to talk about it. She asked a few questions but that was it. I think she was researching it herself online.

    Our surgeon also didn't have my daughter donate blood. They used the cell saver but would have used the blood bank if she needed more. The blood bank is very safe.

    I took my cue from my daughter in the weeks before the surgery. We tried to keep busy and that helped.

    You and your daughter will come through this magnificently.

    sharon
    Last edited by Pooka1; 07-10-2009 at 04:54 AM.
    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."

  7. #7
    Join Date
    Jul 2009
    Posts
    13
    Sharon -

    Thank you for that. Right now my biggest goal is to be here if and when she does have questions. I don't want to force her into talking about it if she is not ready. Figure we have the summer so have her off doing all swimming, running, and camping she wants before surgery time.

    I hope your daughter is or has made a speedy recovery.

    Thank you...

    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.

  8. #8
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    My daughter was fused on 26 March 2008 and is fully recovered.

    Her curve was 58* on the table and had been moving at 5* a month for at least 5 months. We couldn't wait. She was corrected down to 5* which has been stable as of the 8 month mark several months ago which was her last check; the next one is in November. They were also able to remove most of the rotation.

    Your daughter is in the same range so I'm thinking you are going to get an excellent result also in terms of stability and cosmesis.

    Good luck.
    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."

  9. #9
    Join Date
    Jul 2009
    Posts
    13
    Sharon -

    That is wonderful news! Glad to hear she faired so well. Out of curiosity, did they do anything to fix her rib-hump, if she even had one? I keep reading about how some have ribs cut down or something in order to help fix the rib mis-alignment but still do not quite get it. Seems others say that the fusion itself fixed that. Since Khya has the hump I am tring to sort out if I should ask or the surgeon or not.

    Sorry if have too many questions. Guess it is nice to finally have someone that answers back.

    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.

  10. #10
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    As far as I know, the rib hump is from the rotation.

    Because they were able to almost completely derotate her, she has no rib hump that I can see, even in tight shirts.

    I'm happy to answer questions but I hope others answer also so you hear a range of testimonials.
    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."

  11. #11
    Join Date
    Nov 2008
    Posts
    71
    welcome, Jules
    This forum has helped me tremendously.

    Quote Originally Posted by Pooka1 View Post
    As far as I know, the rib hump is from the rotation.

    Because they were able to almost completely derotate her, she has no rib hump that I can see, even in tight shirts.
    .
    My son Jesse's rib hump was also "fixed" during surgery. The surgeon (with Jesse as a model) explained very well how they planned to do it. I have not noticed it.
    We received a booklet about the surgery, pre-op, hospital stay. Jesse (16) had his own list of questions for the surgeon, many of which were on my own list. Other than that, he did not want to talk about it, nor was he interested in checking out this site. Thankfully, he did have a friend who a year before had the same surgery, surgeon, etc that he was able to talk to.

    Good luck and ask away any time you need to.
    Bethany

  12. #12
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi Jules

    My daughter seemed to have no interest at all prior to surgery. I told her what I felt she needed to know. I wouldn't be too concerned about that, I think every kid deals with it in their own way. Spinekids has a forum for kids who are having spinal surgery if she's interested (mine wasn't).

    Her rib/lumbar humps are completely gone. She still has some rotation in her shoulder but not bad at all. Her posture is perfect and she is 2.25" taller now after surgery.

    Take care

  13. #13
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Jules,

    I'm so sorry to hear of your daughter's recent diagnosis and need for surgery. I know how shocking this is, even without having to deal with immediate surgery.

    I had a spinal fusion when I was 17 and I know I didn't want to talk about it, or think about it. I had never had much contact with hospitals or sick people, so I simply didn't have enough life e_perience to have as many concerns/worries as adults do. I could definitely tell that the adults in my life were completely freaked out about it, so that made me want to know that much less! She will ask what she needs to know, otherwise, try to let her have some control by letting her decide what she wants to ask. You will both do fine I'm sure.

    I noticed your signature line listing Emanuel--by chance are you seeing Dr Barmada or Dr Achtermann? We have seen Dr Barmada several times.

    Take care, you can ask anything here,
    Last edited by leahdragonfly; 07-10-2009 at 11:33 PM.
    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

  14. #14
    Join Date
    Jul 2009
    Posts
    13
    Wonderful info - thank you. Have to agree, giving her what I think are the important bits and letting her ask from there. Hoping that when we meet the Dr again she might have more questions to ask him.

    @Leahdragonfly - Yes, her Dr is Dr Barmada. The pediatrician recommended both Dr Barmada and Dr Achteman but the Bone Clinic felt Dr Barmada would be best suited. If I might ask - what was your experience like with them? So far he seems wonderful to me, but then I so stressed out that I not sure how much I notice.

    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.

  15. #15
    Join Date
    Oct 2006
    Posts
    132
    Quote Originally Posted by purplepixie View Post
    I am also curious about the reaction of my daughter. She does not seem concerned about this so far. It is still early I know, but other than those few details of food and such, the enormity or what have does not seem to phase her. Is this normal? I do give her info. I want her to be involved and know what is happening. She needs to have some control here. I just wonder if I am just missing how she is really feeling.

    Thanks for all the input. So very much needed and appreciated.

    Jules
    I can't help you much with the blood donation as Carolyn did not weigh enough and basically we realized no one in our family has her exact blood type. Weird. They don't want mothers donating for some rare blood reaction that can occur, I don't think I could have anyway as I'm RH + and she is RH -. I know in our case, they basically recycle her own blood during surgery (there is a name for it but I don't remember what cell saver? maybe) but she did need 1 unit of donated blood. We ended up just using the blood bank.

    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. She is doing a pageant and working with a coach. It drives the coach nuts when she is trying to get her to answer the questions such as "what is unusual about you?" and Carolyn answers NOTHING. She doesn't think having the surgery is something unusual. Carolyn is collecting DVD's for teens at the Shriner's hospitals & that is why her coach is wanting her to pull her surgery into it so she can talk about her Shows for Shriners she is doing. Carolyn doesn't mind talking about it but she has NEVER talked about it as if it was a big deal. She has always talked about it as if it's going to go get a hair cut or something.
    Becky
    Mom to DD (15) with S 48*+ curve
    Had her surgery March 9, 2009

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