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Thread: No more waiting for walid !!!!

  1. #1
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
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    No more waiting for walid !!!!

    ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

    Greetings from Kelowna, Canada

    Here is Debbie mother of Walid who is fifteen and diagnosed with a very serious high thoracic kyphosis. In July of 2009, I took Walid to his pediatrician because his back had started to dramatically curve. A consult was made to a specialist at our province's BC children's hospital, a hospital with a mission to provide expert care. I studied their website and felt instantly relieved that my son would be in their hands. Unfortunately at that time I did not yet understand that their orthopedic deparment was struggling with waitlists for almost everything from consults to diagnostic to surgery.
    banner.jpg
    Once you hear the words your child "needs a surgery no one wants to do unless absolutetly necessary" your world changes. The added stress of hearing "your child is on a waiting list" is a wicked combination almost too much for a parent to endure but I did with much support from family and friends. When I found out that Walid's surgery promised for this summer was not even in the planning stages I became very scared. Why was my son being neglected by the healthcare system at a time when he needed it most? I started my campaign - no more waiting for walid- mama bear was upset.
    http://youtu.be/nBjDBb9vnTQ
    The video created by my friend was a great gift. It allowed me to know that Walid's story was being told even when I was sleeping and sleeping was something I was having a hard time doing. But there was endless support and even though it was the worst of times in some ways it was the best. All the love that surrounded Walid I knew all would be well. Shriners contacted me when they heard about Walid's long wait and to make a long story short we are going there Oct. 31/11 to start halo traction for about three months and then surgery to fix walid's back.
    269610_243767095634715_242834155728009_995923_1249784_n shriners.jpg
    BC children's hospital warned me not to go to Shriner's when they heard that we were going for an initial consult Sept. 12 ... they told us they were the only ones that could operate on Walid's advanced condition and if I wanted best care for Walid I should stay with the BC children's hospital. This made me very confused and worried that I would make the wrong choice for my son. It also made me angry that after leaving my son so long, that his curve even though hard to measure was probably between 125-130 degrees, his anterior rib and sternal anatomy quite deformed and his head dramatically forward shot, the hospital was making me second guess looking at other options. Thank goodness I followed Shriners advice to at least go for an initial consult and then decide. I was so impressed by their care, compassion and their expert medical treatment without waitlists; it was easy to tell BC children's hospital that we were switching to Spokane Shriner's Hospital!!!
    wow that is some curve.jpg
    http://www.globaltvbc.com/video/wait...142&s=dd#video
    So I have filed formal complaints with the hospital and hopefully a review board will ensure that other parents are fully informed about their options in the future so that they make their own choice about waiting or not. When I was told that a waitlist was Walid's only option that was clearly not true; I am struggling that a hospital that states their mission is excellent care for children doesn't automatically refer children to hospitals when they cannont deliver on their mission.
    272747_243598015651623_242834155728009_995533_6924392_o shriners.jpg
    Now my focus will be on Walid's healing journey and I look forward to sharing it with you knowing that your support will be so helpful. I have been so focused on ending the waiting that I have to shift gears, relax and focus on my son and imaging a future where he will soon be walking tall and strong. Cheers Debbie ♥♥
    012.jpg
    Last edited by walid; 10-23-2011 at 11:28 AM. Reason: was not finished with initial post lost all my saved info yikes starting over

  2. #2
    Join Date
    Jul 2011
    Posts
    535
    So happy you are on this forum, Debbie! What is the measurement of Walid's curve(s)?

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  3. #3
    Join Date
    Jan 2008
    Location
    NC
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    8,903
    The other great thing about going to Shriners is that you will get a surgeon who is very experienced in pediatric spine.

    If you stayed in BC for the surgery, I believe Spiny Mouse said there are only two pediatric orthopedic surgeons. With only two, maybe neither has much experience in spine since they necessarily have to be generalists.
    Last edited by Pooka1; 10-23-2011 at 11:57 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."

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Welcome Debbie! I am glad you're here and that Walid will finally get the help he needs.

    We will all be rooting for him and watching for updates.

    Take care,
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
    Join Date
    Oct 2011
    Location
    kelowna
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    22
    Quote Originally Posted by Doreen1 View Post
    So happy you are on this forum, Debbie! What is the measurement of Walid's curve(s)?

    Warmly,
    Doreen

    The measurement was 110 degrees last summer and since then the surgeon was said it is difficult to measure but estimates are between 125 and 130. Walid also has scoliosis but that is minor compared to the kyphosis. How come you have to wait till 2012 for your surgery?
    Last edited by walid; 10-23-2011 at 11:54 AM.

  6. #6
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Hi Debbie, I am glad that your account is now working and that was a great intro! Oct. 31st. is just around the corner so you'll have to get your stuff in gear to take down to Spokane. I hear Spokane is a very nice city and I'm sure you'll enjoy hanging out there for a while and checking things out. I loved Portland even though it rained pretty much the whole time so I didn't walk around town much. I did a lot of reading, watched movies with Elias, played around on my laptop, chatted here with forum friends and occupied my time talking to myself on my blog, lol. Mostly I just watched my boy get the care he so desperately needed which was so rewarding.

    Doreen has to wait until 2012 for her surgery b/c she is taking medication to first strengthen her bones. She has a blog link in her signature that explains more about her story.

    Oh, and welcome fellow BCer!
    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

  7. #7
    Join Date
    Oct 2011
    Location
    kelowna
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    Quote Originally Posted by Pooka1 View Post
    The other great thing about going to Shriners is that you will get a surgeon who is very experienced in pediatric spine.

    If you stayed in BC for the surgery, I believe Spiny Mouse said there are only two pediatric orthopedic surgeons. With only two, maybe neither has much experience in spine sine they necessarily have to be generalists.
    The surgeon at Shriner;s Spokane was surprised that another surgeon would say they don't have the expertise that Walid needs. He showed me some examples of other kids that he has operated on with advanced curves ... all from Canada. When all I wanted was a surgical date for my son I was so surprised to hear that immediate surgery would be a mistake and he would probably not achieve much correction. With traction his muscles, joints, bones etc would be more prepared for surgery... this makes so much sense and all I can think about is how how much better Walid's outcome will be with traction first. Thank you Shriner's for investing in my boy. Thank you Sharon for your support!!

  8. #8
    Join Date
    Jan 2008
    Location
    NC
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    I think what you wrote is an example of what I am saying... had you stayed in BC, apparently neither of the two pediatric orthopedic surgeons would have done the traction first and therefore would not have gotten the better outcome. This is why I think there is no way either of those two surgeons could be spine specialists. With two guys serving that many kids, they almost certainly have to be EXTREME generalists.

    Looking forward to hearing great reports from you guys!
    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 2011
    Posts
    535
    Quote Originally Posted by walid View Post
    The measurement was 110 degrees last summer and since then the surgeon was said it is difficult to measure but estimates are between 125 and 130. Walid also has scoliosis but that is minor compared to the kyphosis. How come you have to wait till 2012 for your surgery?
    Dr. Lenke's waiting list is long since he only does about 30 adult scoli surgeries per year in addition to pediactric surgeries along with developing new techniques/hardware. He's a very busy man and so worth the wait. I'm on his cancellation list and look forward to receiving a phone call with a new date.

    How does Walid feel about going to Shriners on Monday?

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  10. #10
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    I have nightmares about what would have happened if Elias had in fact got that appointment with BC Children's. I got 'the call' three months after his second surgery/traction and to think of how advanced his curve would have been if left that long and how little they really could have corrected it scares the hell out of me. I'm not good at math but if his curve was 110* in January and when we went back in March to start traction, he had lost another inch in height in those two months so his curve could have been closer to 115*. By July when I got the call it could have been 120* and that would have been our first visit just to be seen. Who knows how long we would have waited for an actual surgery date, yikes! Then there would have been no traction done and merely an attempt to fix the damage as best as they could with a single, no doubt extremely long surgery with more risks and complications. I often quote Garth Brook's song: "Sometimes I thank God for unanswered prayers".
    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

  11. #11
    Join Date
    Jul 2011
    Posts
    535
    Quote Originally Posted by Elisa View Post
    Doreen has to wait until 2012 for her surgery b/c she is taking medication to first strengthen her bones. She has a blog link in her signature that explains more about her story.

    Oh, and welcome fellow BCer!
    Hi Elisa,
    Actually I don't have to wait for surgery because of the Forteo, Aug 1 was the first available slot, crazy, huh? I specifically asked Dr. Lenke if a cancellation opened up, could I take the new slot or still have to wait for the Forteo. Lenke said he will still do surgery even if I get bumped up earlier. That was a big relief for me because this waiting is for the birds.

    Thanks so much for sharing Walid's story with the forum a while back.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  12. #12
    Join Date
    Sep 2008
    Location
    Canada
    Posts
    60
    Welcome Debbie!! So glad to hear that Walid is going to get the care that he deserves. Please keep us updated with his progress. All the best!
    CAmomof2

    July 07 - T 26*
    Aug 08 - curve now 22*
    Sept 08 - SpineCor Brace (in brace 17*) Ste. Justine
    March 09 - in brace 14*
    Aug 09 - in brace 14* / MRI normal
    Feb 10 - in brace 18* - had an oob xray - now 35*
    June 10 Considered VBS T 32*, L 27* , Stopped SpineCor brace
    Sept 10 T 38*, L 26*
    April 11 T 45*, L 31*
    July 11 T 51*, L 37*
    MIS SURGERY - NOV 28, 2011 / Age 12 / Fused T4 - T12

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    Hi Debbie,

    Its good to be pointed in the right direction....has there been any plan of attack discussed? Will they do a “snipping” surgery like they did to Elias to loosen things up so the halo traction will be more effective? Will they do an anterior in 3 months after halo? Any discussions on how high they will fuse?

    Also, you say that Walid’s curves were discovered in July 2009. What happened, did you just notice the hump all of a sudden? Do you have any pics during that era, or just before? I’m wondering how long it took, how fast the progression was? Did I read that Walid is 15 years old? I noticed my lower left lumbar hump when I was 15. All of a sudden, it was there.....These things happen.

    Being an old scoli, I have a million questions and of course its part of me, I guess. I waited 34 years after being a Luque wire candidate back in the 70’s. I waited because I was scared, and waited for technology. When the pedicle screw was introduced, I knew that was the cats meow. Technology has come a long way since I was a kid.

    I was never a parent of a child with scoliosis or kyphosis which is probably a good thing. The one thing I can say is that we adapt in time, we become adept at the many different styles of pitches that come across our plate. Walid will become an excellent batter, left or right, it wont matter, he will be able to handle all of it. Show him my x-ray and my skiing video. If he wants to ski, you let me know. Its been a few years since I skied up in BC.
    Ed
    http://www.youtube.com/watch?v=4tEyp...&feature=email
    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

  14. #14
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    I'm curious about all those things too Ed and am looking forward to updates from Debbie when she is able to post them. I've been especially curious about the halo traction b/c unlike Elias who had a posterior release (loosening of spine), halo application and was in traction 24/7, Walid will be in traction for just 12 hours a day. That makes me think he won't have the release surgery but I am totally guessing here. The other halo boy that was there at the same time as Elias did not have release surgery either, just traction and then anterior fusion. Depending on the individual case, what kind of curve they have etc. makes a difference too. Elias' scoliosis was thoracic whereas Ryan's was mostly lumbar.

    Doreen, glad for the correction. I think I was mixing up what Lenke advised with that of the other surgeon you spoke with.
    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

  15. #15
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
    22

    Wow you guys are so amazing!!!

    ... and i love reading all of your comments, we are going to spend our week packing and stuff, have a little going away party on Sat. I will show you guys another picture of his neck from the MRI
    IMG4 (20).jpg
    unfortunately when kyphosis gets to 100 degrees and keeps going the curve starts to take on a direction of its own. The last year his sternum has been most grossly affected. I can't imagine what will happen with surgery but I don't know much about the specifics - i haven't seen the surgeon since he has seen the MRI, I wonder if Walid might have another MRI closer to surgery to see what the traction has done. Anyways will know way more when I talk to the surgeon. I have met him once that is it. Putting positive images out there so little walid can walk tall and strong. Just traction no other surgeries is going to get that cord ready for some serious manipulation. They will have to closely monitor his neurological status throughout surgery. The surgeon is hoping that with the traction he will be ensured more correction yeah ... cannot believe that healing is around the corner.

    I am not a big planner so hopefully this week is going to get me somewhat organized. I have a list started. Looking at it a little like an adventure. I definitely will miss family and friends but some have already talked about visiting ... there is all this other stuff like skpe, facebook etc.

    I really hope a cancellation comes your way Doreen!! August is a long wait!

    You know Ed it seemed like over night walid's curve became so obvious and then just kept progressing. I should see if i have pictures when he was younger his scolios had been more of a concern when we first went to the surgeon than his kyphosis. Yes I have that nightmare too sometimes spiny mouse ... could you imagine what our children's surgeries might have been like ata children's ... i mean that is a scary reality and we are not exagerating because we are bitter although i have heard both surgeons are exceptional.

    I am overwhelmed by the magnitude of this site and all the info that exists. Thanks for the huge welcome. Next step admit to hospital and surgery next day so halo traction can begin !! Cheers and Love Debbie, Walid's mom

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