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Thread: Not the news we were hoping for or expecting

  1. #31
    Join Date
    Aug 2010
    Location
    Illinois
    Posts
    65
    Quote Originally Posted by LokanasDad View Post
    Actually, she blamed it on his slouching all the time. In retrospect, he was slouching all the time while sitting because it felt "normal" to his spine. Sitting "up straight" was a task. Looking back on the last several months, there are a lot of signs, like the sitting hunched over to one side, kind of sitting in a ball sideways, and his complaining that his back hurt after doing the dishes by hand. We just figured it was his not wanting to do the dishes/ the sink being so low since he is 6' 1" tall. I think I am a lot like Elisa's husband right now. I keep looking back, trying to see where we missed it. I know it will not help with where we are, but I have no power to change where we are, so it at least gives me something to keep busy.

    OMG, you took the very words right out of my mouth! That is exactly what we thought about her sitting. Our daughter is always sitting in a sort of off-kilter, squiggly drooping slouching sideways curve. Now we know why. It is probably the most normal posture to her spine...If we could only retrain their brain/spine/balance maybe it would self-correct...maybe...
    Mother of 14 yr old daughter with scoliosis
    Diagnosed at 12th birthday 1/09: 17T 13L
    6/09: 18T 14L Oh God she's increasing
    4/10: 27T 16L My worst nightmare
    7/10: 33T 18L Oh help God!
    7/10: off to CLEAR Institute: We'll see
    10/10: 33T 16L What?
    1/11: 31T 16L 6 months after CLEAR... hhmmm...

    "What a long, strange trip it's been..."

  2. #32
    Join Date
    Mar 2011
    Posts
    52

    Red face Got the call today

    Shriners has accepted him and we are scheduled to see a doctor in Greenville on April 19th, the week before easter. This is truly an answer to prayer.

  3. #33
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Awesome! Hope Shriners Greenville is as great as the one here in Portland. April 19th. is the day my son is scheduled to have his second surgery here. :-)
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  4. #34
    Join Date
    May 2010
    Location
    Yuma, AZ
    Posts
    30

    Thumbs up Wow... been a long road already for you!

    HI! I've been off the forum for awhile, life sort of exploded for us!

    A little back story - my daughter was diagnosed April 2010 with a 56 degree curve and a lower curve "compensatory". She saw a doc in Phoenix as we are 3 hrs away with no Peds docs... he said brace, and wait. Surgery next summer. OK... did the Charleston... three months of it. In the meantime, because what brought the curve to light was an injury to the back in Karate class, she was still in pain... we saw another doc to deal with that as the first wasn't helpful at all. It was soft tissue bruising deep but found out at the three months post bracing --- the curve now at 66. WHAT??? She wore it as required for 12-16 hours (recommended 12-14, but she did really good wearing it). New doc said, brace not working, stop wearing it, surgery date ok for december 13? We said ummm ok... By the time we hit surgery, she was at 76 degrees. This was in 8 months she progessed 20 degrees or so...

    The year prior, June 2009 her doctor on the military base thought he saw something but didn't pursue it. Which is where dad and I kicked ourselves for awhile.. if we'd pursued it with this quack, she wouldn't have needed surgery, etc. We were wrong. She may have been slightly curved, and yes she slouched alot... she's 12!! But seeing a 20 degree progression in 8 months showed us we probably couldn't have changed anything!

    She was a trooper for surgery! it was 6 hours, and thankfully the one thing we didn't have hanging over us was the medical bills. Husband is a retired Marine so our insurance is pretty amazing. So we were able to focus on the surgery and the recovery. It was the longest 6 hours of our life. The waiting was agonizing.

    My 12 yr old was in the room when they explained the "worst case scenario/what can go wrong". She was worried, but like we explained to her: 1... the surgery was a must. her curve was at the mid rib area... so much more of the curve and she would have lung compression maybe... 2... we are religious and she gave it to God to handle... - The morning we left for the hospital in San Diego (RAdy Childrens) was a Sunday and we attended Mass, the Priest did a annointing of the sick (blessing) and off we went. She was at peace, and then the next morning she was scared but being tough! She turned as they went to walk into the OR, gave me a thumbs up, said see you soon and off she went! I bawled, Dad sniffled and we waited.

    It was the best news to see the Dr after and be told that while she did need the two units of blood dad and I donated prior; the surgery went so well.

    The recovery for her was very quick too. Once we got her off the morphine and onto oral meds, she did so well. Surgery was on Monday at 1pm till 7:30 pm then recovery till 9:30pm. On friday at 11am, we were heading home!

    Your son can do this and so can you. It's no one's 'fault'. It happens and progressions can be slow as molasses or fast as a race car! Who knows and really who cares? Get the treatment, the kids have awesome battle scars and they get better! (MY duaghter is proud of her scar that goes from teh base of her next to the top of her butt! It's huge!!)

    Jen

  5. #35
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29
    I've been of the forum for some time. I just read about your son. My son, 12 yrs old, just had surgery December 22nd. He never spoke about it, I didn't want him hearing everything, but my husband thought it was important that he did and that we didn't hide anything from him. We told him it was up to him how much he heard, if it ever reached a point that he didn't want to know anymore then he could walk out of doctor's office. He listened up to the last appointment when he told us he'd heard all he wanted to hear and just wanted to get it over with. Our son was also prayed for by many. Our church prayed for him the Sunday before his surgery, he was on many prayer lists and we put it all in God's hands.
    They gave him a little something while docs were in & out preparing him for surgery that knocked him out! When they wheeled him off to surgery he was sleeping all crazy and we just kissed him (not near his drool) LOL! Kids are so stinking tough! We had some issues during hospital stay, he was in more pain sitting down than he was walking, but he actually got in trouble for not using his morphine pump. He had it taken away early because they said it was capable of a lot more than what he was using, and they wanted to give him oral meds to be sure he take the meds. Coming home made all the difference in the world! It was a huge turn around, he said he just felt so much better being home.

    My son was diagnosed with scoli as a toddler, his first scoli doc was fabulous and first thing he did was schedule an MRI. My son has Chiari Malformation which is the cause of his scoli. They usually tape Vitamin E capsules to his spine during the MRIs along his spine. Before surgery he was starting to have difficulties breathing, he never noticed it but we did, I think it was almost normal to him. After surgery that got much better. He also has sleep apnea and used to make all kinds of dreaded noises while he slept, he had to warn people (family & friends) so they wouldn't get scared at night. That has also improved. It's weird to see him so straight, we cracked up laughing the other night when he raced his younger (and faster) brother, he was so straight it was comical.

    He is not at all embarassed of his scar, he's gone swimming a few times with friends and isn't shy about peeling off his shirt. He had to give up football, but he was released to return to baseball this month (April).....YIKES! Him having scoliosis most of his life I can tell you there is no one to blame. Please reassure your wife there was nothing ya'll could have done. We watched his, went a 1 1/2 without visits (finances) and when he tried on a shirt his dad bought him I grabbed the phone and started trying to make an appointment because it was visibly worse. Hope all goes well, I will definitely keep an eye on your posts.

  6. #36
    Join Date
    Mar 2011
    Posts
    52

    Question Preparing to leave for Shriners for first appointment

    My wife wants us to write down some questions to ask the Drs there on Tuesday. Problem is that a) I am unsure what to ask and b) some of the things that I do know to ask I am unsure if I want to hear the answers to the questions. It has been a rough week and a half. Reality has come crashing down on the boy and on his momma and on me. A lot of sleepless nights worrying about the surgery.

    So, any ideas of good questions to ask them?

  7. #37
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Our initial consultation with the staff at Shriners consisted of a lot of basic questions by a nurse, an intern, then height and weight was taken, then an x-ray and then a physical examination by the surgeon and then a discussion with him about what exactly the plan would be to deal with my son's severe scoliosis. He explained what he thought would be the best to course to take and I listened and asked a few questions but mostly I just listened to what he had to say b/c after all, he's the specialist not me.

    Then he was put on an "urgent" list for surgery b/c his particular case was pretty bad and that was about an eight week weight. I don't think you'll have to worry too much about trying to figure out what to ask b/c they are the ones that take the lead and ask you all kinds of questions. They're really quite thorough and do take plenty of time with you. You won't feel at all as though you're being rushed through. At least that's the way it was for us. Keep us posted.
    Last edited by Elisa; 04-17-2011 at 11:30 PM.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  8. #38
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Please let us know how your appointment goes.

    Melissa

  9. #39
    Join Date
    Mar 2009
    Posts
    1,090
    I think I would ask if minimally invasive surgery was available and feasible. I don't know the specifics about your son's curve, but it sounds like it was caught just at the surgical level and sounds like it might be a flexible thoracic curve and therefore could be a candidate for an endoscopic procedure that saves fusion levels thereby increasing flexibility post-fusion, less noticeable scarring, and less invasive causing recoveries to be quicker.

    I have no idea if Shriners provides minimally invasive surgery, but some locations are at the forefront of various surgical techniques so who knows? It's worth a question to the surgeon. Just make sure the surgeon has experience with these surgeries as it's not a common technique yet.

    Otherwise, I'd be asking about which levels are to be fused and why, how long the incision(s) is expected to be, what is going to be used as grafting material and where they'll be obtaining it from and any risks/benefits from the method they use. I'd also want to find out about any arrangements for blood donations prior to the surgery from your son or family members to keep in reserve if necessary.

    I have no actual experience with the surgical route, but these are the questions that come to my mind if I were going to a pre-op visit. Good luck.

  10. #40
    Join Date
    Mar 2011
    Posts
    52

    Unhappy Appt today at shriners

    Todays appointment was good overall. They did an x-ray: 56 degree from T6-L2. They recommended surgery. This we expected. We told them that our doctor in Jax had already told us that and they asked if we were there for a second opinion. We told them that we wanted to do the surgery there. They are scheduling a surgery and want an MRI. Since he had a order in for one from his Jax doc, and the hospital next door could not do him today, we are having the MRI done at home and having them fax the results to G'ville. After the doctor left, my son finally broke. It is real to him now and he just started crying. They took him on a tour of the facility and answered a lot of the questions that we came up with. They told my son that he will not be able to move heavy loads or do a lot of twisting for about a year. As an actor and technical theatre student, his world is just crashing down on him. This is going to be a hard year, I fear.
    Last edited by LokanasDad; 04-19-2011 at 07:53 PM. Reason: Explaining why the sad face.

  11. #41
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Lokana's Dad,

    I just read your entire post today for the first time. I'm sorry your son has to go through this surgery. My son had it done at age 12. But despite causing a lot of stress and chaos due to multiple appointments, treatments, restrictions of various sorts, etc., it's really helped him grow into someone who seems to know what's important in life. He is calm and doesn't sweat 'the small stuff'. He meets challenges head on and doesn't seem to worry much about what other kids think.

    I know your son will rise to the occasion and figure out what he 'can' do, at least in addition to what he's told not to do.

    It's great that he was accepted at Shriner's. I've heard so many wonderful things about them. Please keep us posted on his surgery and recovery.

    Best,
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  12. #42
    Join Date
    May 2005
    Posts
    672
    LoKanasDad,

    I have 2 boys who have had spinal fusion surgery. My oldest (now 20) had surgery in 2005 at Children's Hosp. San Diego. My youngest (13) just had anterior release/ posterior fusion surgery on March 7th. I haven't been on in a while b/c I was stressing too much before this last surgery, but all went well and my son has been back at school 3 weeks now. I feel for your son (and all the kids) as it's bad enough to go through surgery, then to have pretty much all activities curtailed for a while is so hard, I'm already having a hard time keeping the 13 y.o. from overdoing it. If your son has any questions and wants another boy perspective, feel free to throw any questions our way. Best wishes-
    Last edited by flowerpower; 04-26-2011 at 11:03 AM.

  13. #43
    Join Date
    Apr 2011
    Posts
    19

    not the news we were hoping for or expecting

    Okay, you weren't perfect, observing and understanding everything parents. That's history and focusing on it is keeping you from making your best choices now and you have big choices to make.

    The most important thing to do is pick the best surgeon you can find, somebody that does this surgery every day. It takes special skill and judgement. Washington University, where Dr. Lenke practices, has a lot of financial aid. They also have a Shriner's Hospital. I find that the best places have more financial help. Call Dr. Lenke's office and ask for information and direction. They are kind and caring people and they will direct you to the help you need. Dr. Lenke's office could refer you to someone at Shriner's. You could also call Barnes Jewish Hospital and talk with people in their finance office about sliding scale. They have a booklet regarding this. They will help your son get what he needs without sending you down the tube. I am sure that many people here could direct you to other places that would be helpful to you too. Best of luck!

  14. #44
    Join Date
    Mar 2011
    Posts
    52
    Frustrated beyond belief. We went for the MRI last night. 4 hrs and they never could do his lower back because he would move without knowing it and the tech never saw him move. Multiple times. So we get to redo that. And now my wife just called. They scheduled him for surgery the week before school starts. He will be out of school for a month and the district has a rule that kids have to be at the school the first week of school or they are expelled from DA and sent to a non magnet school.

    You ever have one of those days?!?!?!

  15. #45
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,268
    Quote Originally Posted by LokanasDad View Post
    And now my wife just called. They scheduled him for surgery the week before school starts. He will be out of school for a month and the district has a rule that kids have to be at the school the first week of school or they are expelled from DA and sent to a non magnet school.

    You ever have one of those days?!?!?!
    HEY! How fast is the curve moving? Can you ask to have the surgery over the nearest school break?

    My one kid's curve was moving at 5* a month for the entire observation period and we still scheduled her 2 months later over spring break. She went from 48* to 58* in that 2 months but was still corrected to <10* (no scoliosis). I'm just saying.

    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."

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