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Thread: Trying to hold it together

  1. #1
    Join Date
    Sep 2008
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    Trying to hold it together

    Well, we had a follow up with the surgeon today. Dd's thoracic curve is now at 60*. I know there is a 5* window, but there's something about actually hearing the numbers go from 54* to 60* that is very sobering. She first had x-rays in October.

    So we are looking at summer surgery. Guess reality hit me today. I'm scared for my child.

    Marian

  2. #2
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    Hugs to you, Marian. Not a good feeling - a punch to the gut. Try to take this one step at a time. Lots of deep breathing. You'll do great. Remind me how your daughter is? How does she feel? Best wishes with your planning and preparation. Not fun, but sometimes necessary. Hang in there. You're doing great.
    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/

  3. #3
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    Sorry to hear that Marian. I can honestly say I know how you feel. I keep telling myself that we can't choose what trials we face in life but we can choose the way we handle them.. I keep telling myself and my daughter this every single day that goes by. Even after the surgery, it seems like there is still a long road ahead. This forum as you know provides excellent support and understanding. I will keep ya'll in our prayers. Please keep us posted.
    Hugs.

    Sharon

  4. #4
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    Marian,

    I too am sorry to hear your news. Carmell and Sharon have given you great advice. Please know that you are not alone. We will all be here for you every step of the way.

    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.

  5. #5
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    Its not nice when you find out the curve has got worse. I remember when I found out my curve had gone from 30 to 65 in half a year.

  6. #6
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    Thanks, Carmell.

    My dd just turned 16 but was diagnosed last fall with scoliosis.
    She had an MRI in the fall to rule out any problems. It was clear. She had xrays 2 weeks ago and we saw the surgeon today. The lateral one was fine.
    Obviously the curve is a 60* one.

    Guess I just zoned out in the dr.'s office. About all I remember is that he said he'd fuse from T-2 to about T-12/14. I had my questions, but just couldn't get them out as I was trying to listen to what he was saying. He doesn't feel like this would ever have an effect on her internal organs, but she would be disfigured (whatever that means).

    She is a trooper--she doesn't say much about this other than a few weeks ago told me she didn't want to be a burden. But she is having some problems--her back gets stiff, she can't stand too long b/c her back starts to bother her. She isn't in pain, but she doesn't want to complain. She wants to be brave (and she is the bravest person I know) but she said she doesn't want to be seen as weak. But she did break down a few weeks ago and cried, not b/c she was scared, but b/c she didn't want to concern me.

    Her attitude changed though, so that makes me wonder if she's telling me everything. Last fall, she didn't really care if she had surgery or not. On the way home she said she felt she should go ahead and get it done. She told the doctor that she said when she walked, she felt like her hips weren't in sync, but the dr. said they were ok, but b/c her back is the way it is, that's what she perceives.

    So I'm thinking that she is starting to feel something's not right.

    She's the one with the antibiotic/medication allergies. She also has asthma.

    I feel terrible b/c I feel like I'm whining--I know your son had many more issues.

    It's just that now it really feels real if that makes sense.

    Thanks for caring!

  7. #7
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    Thanks Sharon, Mary Lou, and Scoliodan. Your thoughts mean more to me than you'll ever know.

    I do thank God for this forum. Guess we have a lot to get ready.

  8. #8
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    My daughters fusion is from T2-T12. She is doing so good physically 9 days post-op. I just thought it might be good for comparrison. I know everyone is different though. You are stronger than you think - and so is your daughter. I didn't know if I would hold up that day but I did and so did she. It is my belief, that God gives you strength when you need it. The road ahead for us still seems sooo long but not nearly as intimidating as before. Hang in there!

    Sharon


    By the way, its not whining, just sharing/venting/whatever - not whining

  9. #9
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    Oh, Marian! I'm sorry. It is so hard to hear that news.
    Of course you are scared for your daughter. AND you are NOT whining. As people said, we are all here for you. (Just as you have been here for us)
    ((HUGS))
    Bethany

  10. #10
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    Quote Originally Posted by smileyskl View Post
    My daughters fusion is from T2-T12. She is doing so good physically 9 days post-op. I just thought it might be good for comparrison. I know everyone is different though. You are stronger than you think - and so is your daughter. I didn't know if I would hold up that day but I did and so did she. It is my belief, that God gives you strength when you need it. The road ahead for us still seems sooo long but not nearly as intimidating as before. Hang in there!

    Sharon


    By the way, its not whining, just sharing/venting/whatever - not whining
    Thanks, Sharon for letting me know how your dd's fusion runs. My dh told me that my dd's case is probably one of the easier ones, if there can be such a thing as an "easy" scoliosis surgery. He doesn't seem to think there are any underlying conditions. I had asked him b/c I had read where a left thoracic curve could indicate such.

    When I asked the surgeon about the possibility of curve below the fusion, he didn't seem to think there was a great chance. Of course, they won't say 100% but he seems to think it's less than 5%.

    I guess it's just that this situation looks so insurmountable. I've read your stories and been inspired but I don't have the strength you all have. My dd and dh are very strong and I guess I feel inadequate b/c I don't have their strength.

    I'm also in the stage of beating myself up for missing this in her and not catching this earlier.

    Thank you for your thoughts and prayers. It also occurred to me this morning that perhaps we should also start praying for these surgeons who do this procedure. Many of us have sought out and found the best to do these surgeries, but a little (or a lot) of Divine Intervention couldn't hurt either.

    Thanks for being there, everyone!

    Marian

  11. #11
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    Quote Originally Posted by babachi View Post
    Oh, Marian! I'm sorry. It is so hard to hear that news.
    Of course you are scared for your daughter. AND you are NOT whining. As people said, we are all here for you. (Just as you have been here for us)
    ((HUGS))
    Bethany
    Thanks, Bethany.

    Everyone here has been great! I'm so glad I found this forum last fall.

    In fact, yesterday in his office, there were more people than were there in October. Of course, in October, we were the last appt. of the day.

    Anyway, I looked at the people and wondered if any of them were on this forum. It was not a very cheerful atmosphere--since my dd's surgeon sees both children and adults, there was a combination of folks in all age ranges.

    I hope some do find this forum--maybe some have already. They will find it to be a great resource, but more importantly, a great place to find caring, supportive people.

    Marian

  12. #12
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    Marian,

    I'm sorry to hear this. You are right to have faith in your surgeon. That is mainly what got me through my daughter's surgery.

    We may be joining the summer surgery club... my other daughter has an appointment in early March. I am guessing this will be the "pull the trigger" appointment. She is over 40* almost certainly and even if there isn't a lot of progression in the last six months, she is guaranteed to have more over her life if we don't nip this in the bud soon.

    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."

  13. #13
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    Quote Originally Posted by pmsmom View Post

    I guess it's just that this situation looks so insurmountable. I've read your stories and been inspired but I don't have the strength you all have. My dd and dh are very strong and I guess I feel inadequate b/c I don't have their strength.

    I'm also in the stage of beating myself up for missing this in her and not catching this earlier.

    Thank you for your thoughts and prayers. It also occurred to me this morning that perhaps we should also start praying for these surgeons who do this procedure. Many of us have sought out and found the best to do these surgeries, but a little (or a lot) of Divine Intervention couldn't hurt either.

    Thanks for being there, everyone!

    Marian
    Marian,

    I typed you a PM and it dissapeared. I will retype it later if you don't get it.

    We never would have found Katelyns except by accident (went for a skin rash, came out with scoliosis and later a tethered cord) and within a year and a half we are here. Don't beat yourself up What's important is now, not the past, not the future, but now. You are helping your daughter and you both will gain the strength you need through this. (I have never been particullarly STRONG emotionally either) I remember all the same feelings myself and sometimes still struggle with them. Hang in there and yes divine intervention is great. It is definately what has brought us this far. Hugs!

    Sharon


    Oh, and THANKS for all of YOUR encouragement to ME in the past. It means a lot to me.

  14. #14
    Join Date
    Oct 2006
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    132
    I know the shock when you aren't quite expecting the results you get.

    Everyone here has already given you fantastic help/advice.

    I don't really have a whole lot to tell you as I'm in the surgery is right around the corner for us.

    I will say it's so easy to miss the scoliosis! I knew ours was a huge chance since my DH has it. We found out at her 6th grade appt. & I did the wait a year, which I should not have done but I couldn't really tell myself at that point in time. Then even with the back brace her lower curve went from 30 something to in the 50 degree range & we weren't even really concerned about that one. So, the smaller curve ended up being the larger of the 2 now.

    Without these forums, I'm not sure I would feel as confident as I do. In addition, on a bizarre chance (maybe Divine intervention?), I happen to find someone on Facebook about a week before her daughter went in for spinal fusion at Shriner's in Chicago.
    Becky
    Mom to DD (15) with S 48*+ curve
    Had her surgery March 9, 2009

  15. #15
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    More hugs to you, Marian.

    Now for the lecture (you know this already, but hopefully a reminder will help?)... There is no need to belittle the experience you and your daughter are going through. No two scoliosis patients are alike. Each is different. What may seem like an "easier" situation more likely refers to a less complicated procedure, or one that is more routine than another. That doesn't make it less important. This is YOUR child. It IS a big deal. Scoliosis surgery in any form is a major procedure - never to be taken lightly. With her allergies to medications and asthma, that puts her in a bit higher risk for surgery. I'd be making sure to have a good sit-down conversation with the anesthesiologist to make sure they understand her medical history completely. You want all this stuff lined up and a plan in place BEFORE surgery happens. She'll have a smoother and less complicated recovery if you do.

    And whining (or whatever you call it) IS allowed here. That's what we're here for. I hope to be able to share our experiences so others can see they are not alone. It IS possible to get through this. The pre-surgery anticipation is awful. If you can get through that, you can get through anything. If you don't think you are as "strong" as your DH or DD, think again. You are. Keep telling yourself that. You have "been there" for her (and him, I'm sure) many more times than you realize.

    Done lecturing... please remember we have a collectively large shoulder to lean on. Evidence in the fact this thread has so many posts already. We do care.
    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/

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