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Thread: Hey WNCmom!

  1. #1
    Join Date
    Jan 2008
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    Hey WNCmom!

    Dear Mary Ellen,

    I saw you logged in.

    How is it going?

    Best regards,

    sharon
    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. #2
    Join Date
    Sep 2007
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    Deeper fusion

    Sharon--

    I had just written a post and chickened out deleted it and logged off, and then I saw your post to me, so I have to respond.

    We are in Philly and just finished our preop with Dr. Cahill at Shriners. Sidney is cleared for surgery, with the exception of the results of an MRI that was done today, which we still do not have. I am very sad to say that the x-rays showed dramatic progression of his T and L curves since he was evaluated in June (T57). Now they are about T75 and L50. There is some concern that the lumbar is actually more structural than originally thought. They had planned to go from T1 or T2 to L1 or 2; now they plan to go to L3 or 4--most likely 4. They were taken by surprise; there was no indication the curve(s) would progress this quickly. We actually had an x-ray done in Atlanta in August; it showed no progression.

    I am in shock and feeling very bad. Sidney will lose more flexibility than we expected and his hoped-for correction will be much less than we expected; his back will never be even close to straight (I know that cosmetics is not an issue, really, but I was hoping for something in the 20s, anyway). I am trying 1) to be grateful that it's possible for the curve to be stopped, 2) not to feel guilty, 3) to believe there is a reason for why this happened. Also, I know I need to focus on supporting Sidney through surgery and not on the negatives.

    Dr. Cahill said that it is possible that if the surgery had been done earlier, the lumbar might have continued to progress, necessitating a second surgery. I don't know if he is right; I don't think he was just trying to make me feel better. We will never know.

    We still are waiting for the results of the MRI to be sure there is nothing there that shows an underlying cause (two previous MRIs showed no change in a small syrinx; the last was done over a year ago). Also, Sidney has no kyphosis; for the first time I heard Dr. Cahill say it would be a challenge for him to build that back into his spine.

    I'm sorry I'm not in a place to read other posts and see how others are doing; I just need time to adjust to this change for the worse.

    Sharon, I did read the first bit of Savannah's check-up report. Glad to hear she's doing well. Any encouraging words from parents whose children have been fused that low or adults who have been fused that low would be welcome.

    Thanks for being there. Sidney will be admitted tomorrow.

    Mary Ellen

  3. #3
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    Mar 2007
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    213
    Hello, Mary Ellen.

    I'm so sorry to hear the news wasn't what you'd hoped. I'm not a parent of a child with scoli, but I had my 2 fusions when I was younger (12 & 14 yrs). I was one of the ones who had to have a 2nd surgery to correct a lumbar curve that progressed very rapidly after my thoracic surgery, even though they thought it was just a minor compensatory curve. I know fusion is a big surgery, but I would have preferred to get it over in the one surgery.

    And I can only speak for myself, but I didn't find the extension fusion limited my movement much (the full thing runs from T3 right down to the lowest vertebra & anchors into my pelvis). Flexibility is affected, for sure - but that's definitely not to say that my everyday *movement* is much affected. Obviously there would be problems for say, a gymnast, but I doubt that most other sports would be much affected (once restrictions are lifted, of course).

    I may be facing a not-so-great correction with my next surgery, either - but there will be at least some improvement, and the curve/rotation will not progress any further....and for me, that's an important thing, too...though, of course, it's very easy to feel down about the prospect of less-than-perfect correction. I hope that for both of us, things come out better than we could ever dare to hope

    Now I'm just really rambling (sorry!), but I wanted to add one other thing, from the perspective of being the kid/teen going through a big surgery like this. Your son doesn't want or need for you to feel guilty about this, and there's no reason for you to (though I do understand that it's the first natural reaction!). The thing that's important is that his family - his Mum - will be there to help him through the surgery, cheering him on. And when it comes to it, I just know that that's what you and your family will be doing. Please don't forget to take care of yourself, physically and emotionally. My Mum (& to a lesser extent, my Dad & brothers) have always been with me through many surgeries...and to know that they're feeling guilty, it only makes me feel terrible that I'm putting them through this. I don't say that to make you feel worse (& I sure hope I didn't!!), but I hope that a different perspective will help you to move on from feeling so down, to concentrating on getting through this. And I have no doubt that you ALL will make it through this.

    It's great news that Sidney's syrinx has stayed small; and also that it sounds like you trust your surgeon. That's a great start.

    Best of luck to Sidney and your family. And remember we're all here to support you - no need to chicken out on posts again ;-)

    Take care.

  4. #4
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    Dear Mary Ellen,

    I'm sorry to hear about the recent news you received.

    Please don't feel guilty. There is not one single parent on this board who hasn't made every effort to help their child at very turn. You have clearly done a great job. You were blindsided and so were the surgeons. There can be no blame in your situation.

    I don't know what your doctor told you but maybe you shouldn't give up hope on how Sidney's back will look. Willow has at least a 40* curve at this point and it is barely noticeable (except when she bends over). Also, Savannah was quite obviously cranked around and not expected to have the amount of rotation correction she achieved. So there is hope I think.

    In re a reason why this is happening to your beautiful son, I don't think in those terms. But as I said in the other thread, the scoliosis alerted me to the possibility that my girls might develop Marfan's at some/any point. That alone and all by itself is a huge benefit from this scoliosis business in my opinion, irrespective of whatever correction my girls will get. It is not out to lunch to suggest the scoliosis may have saved their lives.

    In re long-term on a long fusion, I hope other parents weigh in. But I want to say three things...

    1. folks with shorter fusions not extending far into the lumbar are back in the general population but that does not mean they will have no back problems. A lot of folks have back problems. Maybe most. I'm ostensibly in the general population and I have two lumbar vertebrae that are fused (withOUT benefit of morphine... 0 - 10 - 0 on the pain scale for a few months until the disc dissolved.) I would spontaneously yell out in meetings when the nerve was being crushed. I have no known back pathology otherwise and yet my lower back is getting worse in terms of ability to stand for any length of time without pain/stiffness.

    2. It seems to me folks with most of the lumbar fused successfully might experience LESS total back pain than the general population over their life because they can't develop disc disease and crushed discs and naturally fused vertebrae and such. That's how I would look at it.

    3. Folks with long fusions will likely never need another operation to extend the fusion. If I knew there was a very high chance that Savannah would need to have her fusion extended in 10 or 20 years let's say when she is an adult and working a career, and was given the choice of having it fused in the original operation I would ask her but tell her the latter is not out to lunch as an option in my opinion. The idea of a second operation in that short time period is mind-boggling. If Dr. Cahill is correct, Sidney will only have the one operation ever.

    Mary Ellen, I have great confidence in you. This will be okay. You are in expert hands which hold the state of the art. And that art is amazing.

    I'll be thinking about you.

    Best regards,
    sharon
    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."

  5. #5
    Join Date
    Sep 2007
    Posts
    338
    Sharon & Dis:

    Your kind and wise words are incredibly meaningful, especially because you both have experience with this subject. A few details: Cahill is predicting a correction of ~45 degrees. I remember when Sidney's curve was at 45. He actually has always worn his curves so well that only recently have people noticed he even had one. I am worried about the lack of kyphosis, however, and am praying Cahill will be able to build it in.

    You are helping me put things into perspective. I do feel guilty, and I know I have to put that aside, because as a friend pointed out to me, I have much more important things to do right now.

    Sidney's attitude is actually great. He sees no sense in looking back; he is already giving my husband and me advice on what to do during the surgery: "It's okay to sleep. Reading is good. And DON'T watch the clock." Wise advice. I hope I can be there for him as he is for me right now!

    Thanks for the votes of confidence.

    Mary Ellen

  6. #6
    Join Date
    Oct 2007
    Location
    Indiana
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    Mary Ellen-- just want to send my best... I'll be praying for Sidney-- and for you. It sounds like he has a wonderful outlook on this, and some wise advice for his parents. Big hugs, Susie
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  7. #7
    Join Date
    Aug 2004
    Location
    ny
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    1,809
    Hi Mary Ellen,

    I just wanted to say I was thinking of you. I'm sorry you have the added stress of these new developments. Hopefully your son's spine will be flexible enough that they can still get a pretty good correction. You know he's in very capable hands. My thoughts will be with you in the coming days and weeks and I'll be waiting to hear some good news from you.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #8
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    Nov 2007
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    Houston, TX
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    WNCMom,

    I'm also amazed by your strength in the face of tough decisions. Like disc, I'll say I'm not the parent - and I hate that you're feeling any guilt (and hope you never do) over your choices. You did the best you could - and continue to do so.

    I'm sorry Sidney *may* not achieve the correction for which you hoped, but like Maria said, you never know. You and Sidney are in the best of hands ... and Dr. Cahill will do his best for your kiddo in the short and long term. You might be surprised ... and I'll keep crossing my fingers you will be!

    There are many thinking of y'all as you walk this trail. You may feel alone, but as long as you need us, you'll never be.

    Best regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  9. #9
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by WNCmom View Post
    ... I am worried about the lack of kyphosis, however, and am praying Cahill will be able to build it in. ...
    Mary Ellen,

    I wanted to show you my *absolute* lack of kyphosis - and what Hanson was able to sculpt. See the attached pics ... it IS possible!

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  10. #10
    Join Date
    Sep 2007
    Posts
    338
    Thanks Pam, & Maria. You too, Susie. I hope you are right, and I thank you all for your thoughts and prayers.

    I need to ask Dr. Cahill today, but I think his concern is that with straightening such a large curve, he may have trouble building in kyphosis. He did say the rotation hadn't increased all thatmuch.I don't think remember anyone saying it was outrageous to begin with--but definitely there, in any case.

    My challenge is staying positive. Sidney has to get through the surgery okay, then we'll worry about the "details" of kyphosis and fusion level. I'm saying this to myself as much as to you!!! You all are helping.

    M.E.

  11. #11
    Join Date
    Sep 2008
    Posts
    336
    Dear Mary Ellen,

    You all are in my thoughts and prayers.

    Please do not beat yourself up--I agree with what several others have posted--I think most parents do because we love our children so much and would do anything not to have them go through any pain. We would gladly take that pain upon ourselves rather than see our children have it.

    I would say to be thankful that you are going ahead with the surgery. Sidney is in good hands.

    Take care of yourself as well!

    Please check in when you can!

    Marian

  12. #12
    Join Date
    Jan 2007
    Location
    Ontario, Canada
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    Hi Mary Ellen,

    Just wanted to say that Patrick had a lack of kyphosis to the point of having lordosis in his thoracic spine. You can search lordoscoliosis to find my post with x-ray pictures. It was not expected to be corrected with surgery and wasn't. At one and a half years post-op he seems to have no problems with it. Patrick's curve was over 80 with large rotation at time of his surgery and perhaps this might have a bearing on ability for the surgeon to create a kyphosis. Or it's a boy thing?
    We'll be thinking of you.
    Ramona
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  13. #13
    Join Date
    Sep 2007
    Posts
    338
    Ramona--

    I was hoping you would post. I thought I remembered your son having a large curve. Thanks for checking in. Sidney has reduced lung function, so I think that's why Cahill is hoping to be able to build in some kyphosis. I looked up your son's correction, and it was encouraging to see it was 20 degrees. I'm hopeful, but don't want to set myself up for disappointment.

    I hope flowerpower will check in; I noticed her son's fusion was down to L4. Maybe she can give me some reassurance.....

    We will just have to see how it goes and hope for the best. That's all there is to do. I'm just hoping to stay calm. We still do not have the results of the MRI. Off to the hospital in about an hour.

    Thanks for everything...you all are the greatest.

    Mary Ellen

  14. #14
    Join Date
    Aug 2007
    Posts
    388
    MaryEllen, I've been thinking of you and Sidney this week and can only imagine how it felt to get that news. I'm sorry to hear it, but am glad to hear from the posts of others who have experience with similar circumstances that things turned out OK. The next few days will probably be long ones for you, but soon the surgery will behind you (yes the road to recovery will still be there, but the worse will be over) Hang in there! I'm praying for great results!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  15. #15
    Join Date
    Feb 2007
    Posts
    254
    Mary Ellen,

    I will be praying for you and Sidney. We will be thinking of you during the surgery and hoping for a great correction. My Dr. was very conservative with what he thought he could get for a correction and He got me down to less than 10 degrees. Best of luck, I will be praying for the best.
    Patty 51 years old
    Surgery May 23, 2007(43 Birthday)
    Posterior T3- L4
    Pre surgery curves
    T-53degrees
    L-38degrees
    and a severe side shift to the right.
    Post surgery curves
    Less than 10 degrees
    Surgery April, 2006
    C4 - C6

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