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Thread: Back From Shriners-MORE BAD NEWS :(

  1. #1
    Join Date
    Sep 2009
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    Redding California
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    46

    Back From Shriners-MORE BAD NEWS :(

    [I]Ok,so today was Dairriens Post op appoinment at Shriners..They told me that Dairriens Kyphosis was a 92 degree curve...
    She said it is pretty bad and began to tell us that he would have spinal fusion with hardware..didn't really give alot of detail..she was kinda brief..We then saw the Pediatrician...Before this Dairrien had a EKG...
    And I seen some Blips and Decels,and had a feeling something was up..
    So when she came in she goes on to ask if he ever had any heart problems..I told her that he had some chest pain before but we chalked it up to gas...NOW..Dairrien also has Klippel Feil Syndrome...NO ONE EVER made it a big deal,never talked to me about it, I ONLY found out about the diagnosis just a few months ago,and he has been diagnosed with this for YEARS ...SO,she begins to tell me Kids Like dairrien who have this ,one of the effects is HEART MALFORMATION !!! WHATTTTTTT?????
    NO ONE ever told me this...NO one ever said he needed to be tested..SO today they say,He needs to see a cardioligist before they continue with surgery....I am soooooooo MAD!!!!!! All this time,my son could have had serious heart problems and they are just now telling me this??
    My heart is aching...Now I have to watch him like a Hawk..Knowing all of this,is driving me mental...Im just so mad that no one cared to share this information with me..Until Now !!!!

    **Heavy Sigh**I]

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    I'm so sorry you've found out this devastating news. I have no idea why you haven't been informed about this condition sooner. I wish there was something I could say to ease the ache. You must be exhausted. I hope a good night's sleep helps you carry this extra load a little better. You certainly have more than your fair share right now.

    Best wishes to you and Dairrien.
    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

  3. #3
    Join Date
    Sep 2008
    Posts
    336
    I know this is very hard to digest right now--first you're told he'll need corrective surgery, now this syndrome.

    However, take a deep breath, and try to look at it this way--at least they found this now.

    I'm not familiar with this syndrome, but it is best that they found this and can have a cardiologist address this now.

    I don't know if a pediatrician or general doctor would've even suspected this and ordered tests if your son had been perfectly healthy or just even if you had told him about the chest pain.

    Remember--one step at a time. You can and you will get through this. Address one thing at a time. You are the mom and you will get through this for your son--of that I am sure. You will find the strength you need.

    And remember--we are here for you. Keep us posted, please, on his progress.

    Marian

  4. #4
    Join Date
    Jan 2006
    Location
    PA
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    778
    I'm sorry you had such a scary, stressful day. Hang in there.

    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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    Sep 2009
    Location
    Redding California
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    46
    We have a appointment to get a echocardiagram in the morning..Then all we have to do is get him into the endocronologist ( I know I am not spelling that right) for his Empty Sella Syndrome..If he is cleared on both then they will scedule his surgery,they said they have a few openings in December so this is what we are aiming for.. They said his curve is at 92 degrees,and they did a xray to see how flexable his spine was,and she said she almost 100% sure,that she can get his straight So that is good news..Ok questions.....Did anyone have to wear a brace after surgery? She didnt mention it,but I read in a few articles that it is possible..OK next questions..The doctor said that during surgery,there is massive loss of blood and a blood transfusion was neccesary,is this the norm? and did you donate before hand? This surgeon said she likes to operate on kids who have NOT donated because their chances are better to not bleed out..which is fine,I know there is strict screening now..Ok,I think thats about it for now..lol..Thanks everyone !!.

  6. #6
    Join Date
    Jan 2008
    Location
    NC
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    9,308
    Quote Originally Posted by DairriensMom View Post
    We have a appointment to get a echocardiagram in the morning..Then all we have to do is get him into the endocronologist ( I know I am not spelling that right) for his Empty Sella Syndrome..If he is cleared on both then they will scedule his surgery,they said they have a few openings in December so this is what we are aiming for.. They said his curve is at 92 degrees,and they did a xray to see how flexable his spine was,and she said she almost 100% sure,that she can get his straight So that is good news..
    Yes that is good news. If flexible, a great correct is possible as far as I can tell.

    Ok questions.....Did anyone have to wear a brace after surgery? She didn't mention it,but I read in a few articles that it is possible..
    I recall a few testimonials about kids wearing a brace for a short while after surgery. But it isn't the norm any more with the newer instrumentation being very good at holding the spine in the new configuration.

    OK next questions..The doctor said that during surgery,there is massive loss of blood and a blood transfusion was neccesary,is this the norm?
    If you read the testimonials, that doesn't appear to be the norm. But your surgeon knows best. Your son has a very high degree curve so the only person who has a clue about fixing that is teh surgeon. If he says there will likely be a large blood loss then that's what his experience is.

    and did you donate before hand? This surgeon said she likes to operate on kids who have NOT donated because their chances are better to not bleed out..which is fine,I know there is strict screening now..Ok,I think thats about it for now..lol..Thanks everyone !!.
    Some kids donated blood. Our surgeon doesn't do that. Clearly, there is no one right way as is the case for a large number of things associated with this. For both my kids, the cell saver (collects blood, cleans it I assume, and returns it) was enough.

    But again, whatever your surgeon says is right and nothing you read here will be so if not in line with that.

    Also, it's good to get a few opinons from other surgeons, especially those who have done a number of cases like your son's.

    Good luck.
    Last edited by Pooka1; 10-17-2009 at 09:21 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
    Oct 2009
    Location
    Oregon, US
    Posts
    9

    Awww... Im sorry...

    Im so sorry and i tottaly understand! I hope you find the strength to deal with this, i dont know if i ever could be you sound strong, you can over come it, take it one step at a time, with deep breaths.

    I recently learned i'll have to have surgery soon, not immeadiatly but soon. I have a 50 degree curve, and learned about it only a few weeks ago. My school system hasnt been check students for scoliosis which i and my mom think is very irresponsible. My mom feels guilty that she didnt catch the problem sooner, i hope you dont feel guilty.

    also: remember that every body here and your friends and family support you and help you, dont keep all your feelings and problems bottleed up, its not healthy, tell someone if your really mad and upset,

    good luck! i hope your problems work out,

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Best wishes to you and your son. I can imagine the anger and frustration you feel for not knowing what the docs already knew, and didn't tell you. You can't undo what happened. That doesn't help you feel any better, but you need to focus on the immediate and long term future. You need to make the best decisions for him based on the information you have. Continue to research and keep asking LOTS of questions. You will do great. Good luck and let us know how things go.
    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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