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Thread: No more waiting for walid !!!!

  1. #46
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    Mar 2010
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    Quote Originally Posted by walid View Post
    On Tuesday it will be four weeks living in shriners spokane hospital. Today Walid and I accidently collided - one of Walid's halo screws met directly with my left eye ... little bit of a shiner - a shriner shiner!! Surgeons are pleased with his ability to tolerate the traction ... he has his times of frustration understandably but I have developed all sorts of tricks to keep him busy!! His oma and opa are coming this thursday - best medicine!! I have atttached a little movie to give you a glimpse into our days. Walid is seeing lots of kids pull through their surgeries and sees how quick they are up and about. Definitely good preparation for him of what lies ahead!! Lots of love from Spokane ... Debbie and Walid.

    http://youtu.be/9o-4dDyivPE
    That was a really sweet video. Thanks for sharing! Walid looks happy. :-)

  2. #47
    Join Date
    May 2008
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    reno,nevada
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    Walid is straightening up! I noticed a huge difference in the video. Its amazing.

    Keep up the good work!

    Thx for posting
    Ed
    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

  3. #48
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    Oct 2011
    Location
    kelowna
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    22
    Next week I will be talking to the surgeron about the actual surgery and what the surgical plan is. After perusing this site quite a bit this weekend I am overwhelmed by all the different scenarios when it comes to these spines and amazed at all the different approaches. I also realize that I don't know much about Walid's specifics besides he really needs surgery. Kyphosis is not as common as scoliosis although I have noticed quite a few cases where there is a mix of scoliosis and kyphosis. On the last x-ray I definitely noticed some scoliosis as well ... as the obvious kyphosis. Still have two months of traction to go ... but nothing like being informed and prepared. I am very confident in Walid's surgeon and have heard only glowing reports of what he has done for children, Dr. Bryan Tompkins. Any suggestions about what kinds of questions I should be asking. I noticed alot of your names on many of the posts and must say impressed by your scope of knowledge -titaniumed rohrer01 Pooka1 and of course my Canadian buddy Elias. Thinking of Doreen as she is probably out of her surgery by now ... looking forward to her first posts. Cheers ... Happy Day ... Love from Spokane.

  4. #49
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    May 2008
    Location
    reno,nevada
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    Thx Debbie

    I just do this part time, and for a guy who “failed sandbox” in kindergarten, I will try my best. he he

    Have they done any other mri’s or x-rays to see how much he has moved in the past 4 weeks? If so, does he use a program to predict the shape of his spine when they start in another 2 months, and come up with a plan of attack? What will his curves be in both planes when he his finished?

    Chances are that he will access the front of his spine up high to work on his pedicles, usually they go under the armpit on the side (right side, my guess?) This would be called a thoracotomy. Ask and see if this correct. Will he use spacers? What grafting material will be used? Will ribs be removed? (They do grow back). Its obvious that they will do some re-shaping of the vert, what process will he use? Will he use BMP? (bone morphogenic protein) in specific areas? (T7, T8, T9). Is the integrity of his bone ok?

    What will happen to his sternum? Are there any other bone structures that will be altered?

    With kypho’s, the neck can be an issue in the sagittal plane. How do you think it will come out? Will you have to go and fuse above T1 into the neck?

    Ask about his pain. Ask about how to handle this with Walid. Its going to be painful.....I know you know this, but it needs to be addressed.(deep breaths)

    I’m assuming 2 pedicle screws per level like me, but I would ask. And what levels?.....

    How many surgeries will it be? If more than one, what will the stage or wait time be?

    Will they do a “wake up” test? or soley rely on SSEP’s?

    What complications do you expect? and what are the odds?

    I think that you should have “several talks” with him....

    I hope others chime in, I’m exhausted tonight. I missing something.....

    Your doing an excellent job!
    Ed
    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

  5. #50
    Join Date
    Mar 2010
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    2,755
    Quote Originally Posted by walid View Post
    Next week I will be talking to the surgeron about the actual surgery and what the surgical plan is. After perusing this site quite a bit this weekend I am overwhelmed by all the different scenarios when it comes to these spines and amazed at all the different approaches. I also realize that I don't know much about Walid's specifics besides he really needs surgery. Kyphosis is not as common as scoliosis although I have noticed quite a few cases where there is a mix of scoliosis and kyphosis. On the last x-ray I definitely noticed some scoliosis as well ... as the obvious kyphosis. Still have two months of traction to go ... but nothing like being informed and prepared. I am very confident in Walid's surgeon and have heard only glowing reports of what he has done for children, Dr. Bryan Tompkins. Any suggestions about what kinds of questions I should be asking. I noticed alot of your names on many of the posts and must say impressed by your scope of knowledge -titaniumed rohrer01 Pooka1 and of course my Canadian buddy Elias. Thinking of Doreen as she is probably out of her surgery by now ... looking forward to her first posts. Cheers ... Happy Day ... Love from Spokane.
    Thanks for the compliment, but I only learned what I know from being on here! LOL Some topics interest me and I look them up. But honestly, I don't know that much about kyphosis. My aunt has a pretty bad kyphosis, but no one has ever addressed it medically. My family says she got if from slouching because she is very tall and thin, like me. They say that she slouched because she didn't want to be taller than the boys and that's what caused it. I know that's just ignorance on their part.

    As for what kind of questions to ask, I think TiEd pretty much covered the bases:

    * You could ask about blood loss and what methods will they be using for blood conservation. Use of a cell-saver is pretty much standard these days, but there are other techniques that can be employed, such as hemodilution and the use of epogen (a hormone that causes the body to produce more of its own red cells). You can also ask about other issues pertaining to transfusion that you can think of, and what you can be doing now to minimize the need for blood, as it carries its own risks.

    * I agree with Ed on asking about procedure and if it is going to be multistaged. If so, how are they going to control Walid's pain in stage one to reduce anxiety about stage two (if it is multi-staged). This is VERY important if, as you said Walid has some special needs. I have a friend whose autistic son has to be sedated for dental work. If Walid is going to have multiple procedures, will they keep him sedated in between?

    * Something you've probably already discussed and thought about is how much information and mental preparation do you need to give Walid so that his anxiety level doesn't increase. As his mother, you know best. But the surgeon, who has experience with all kinds of kids, might have some good insight on this, too. This includes preparing him to feel really tall and having a different center of balance.

    * Monitering the nerve function was also a good point. You might ask what kind of correction they are looking at (again, I don't know much about how kyphosis affects the spine in terms of spinal cord length and tension on the spine) and how many levels will need to be fused, such as the need for cervical fusion.

    * What, if any, other organs are involved and how will that be monitored. Ed mentioned thoracotomy, which, I believe involves the deflation of one lung and probably removal of a rib in order to reach the spine safely. It seems that I've read about other procedures where they go in through the front of the neck. I don't know if that is out-dated or not.

    *What other procedures will be done, for example, will they be using cages where his discs are?

    * Will he need a body cast or brace afterwards? Not many people do anymore, but some do.

    * Will he still be wearing the halo for a time after surgery? I only mention this because I have a step-cousin, that I believe had to wear a halo for a while post surgery as her deformity was also very severe.

    * What kind of physical therapy will he be doing?

    * What limitations will there be on his activities short and long term?

    * How long will he need to be in the hospital post-surgery? Will he need to go to the ICU?

    * You could ask about diet, as constipation seems to be a huge problem with post-surgical people.

    *You might ask about the risk of nerve bruising and its effects on him and how long do symptoms last IF that occurs.

    * Do the surgeons have a plan B? How long will surgery last?

    * Is he likely to get a thoracoplasty (a procedure to remove residual rib hump after the spine is straightened)?

    That's all I can think of for now. I know some of my questions were redundant as Ed really covered the bases pretty well, He has been through this and I have not. However, I do have friends with special needs kids and things are addressed differently with them. I think much of this is also preparing yourself mentally, which you are doing a great job of, or at least it seems you are. Even if you don't tell Walid all that is going to be done, educating yourself as much as you can (and you are), is a good idea. You are a very pro-active mom. Because of that, Walid is in the best position for a successful recovery. I wish you the very best. If I find out anymore about kyphosis corrective surgeries I will certainly pass on any information that I find with you. Best wishes and (((HUGS))) for both of you!

  6. #51
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    Wishing you the best, along with everyone else :)

    Debbie, I'm a newbie on here, having just joined last week because of my son's new diagnosis....I'm following your story (or at least *trying* to), just to help educate myself in all areas of this........
    I admire you and all you've done for your son. We moms have to pull out all the stops for our kiddos, because if we don't, no one else will. No one else loves our little guys like we do....

    anyway, just wanted you and Walid to know that you're both in my thoughts and prayers.....

    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  7. #52
    Join Date
    Oct 2011
    Location
    kelowna
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    22
    Quote Originally Posted by titaniumed View Post
    Thx Debbie

    I just do this part time, and for a guy who “failed sandbox” in kindergarten, I will try my best. he he

    Have they done any other mri’s or x-rays to see how much he has moved in the past 4 weeks? If so, does he use a program to predict the shape of his spine when they start in another 2 months, and come up with a plan of attack? What will his curves be in both planes when he his finished?

    Chances are that he will access the front of his spine up high to work on his pedicles, usually they go under the armpit on the side (right side, my guess?) This would be called a thoracotomy. Ask and see if this correct. Will he use spacers? What grafting material will be used? Will ribs be removed? (They do grow back). Its obvious that they will do some re-shaping of the vert, what process will he use? Will he use BMP? (bone morphogenic protein) in specific areas? (T7, T8, T9). Is the integrity of his bone ok?

    What will happen to his sternum? Are there any other bone structures that will be altered?

    With kypho’s, the neck can be an issue in the sagittal plane. How do you think it will come out? Will you have to go and fuse above T1 into the neck?

    Ask about his pain. Ask about how to handle this with Walid. Its going to be painful.....I know you know this, but it needs to be addressed.(deep breaths)

    I’m assuming 2 pedicle screws per level like me, but I would ask. And what levels?.....

    How many surgeries will it be? If more than one, what will the stage or wait time be?

    Will they do a “wake up” test? or soley rely on SSEP’s?

    What complications do you expect? and what are the odds?

    I think that you should have “several talks” with him....

    I hope others chime in, I’m exhausted tonight. I missing something.....

    Your doing an excellent job!
    Ed
    I knew I could count on you Ed ... your information is so helpful ... when I first met the surgeon he talked about the high risk of neurological complications and that his ability to correct the spine needs to be balanced out with that risk. At that time I was simply desperate to find a surgeon to stop the kyphosis ... now of course I dream and imagine that Walid can come out of this with as straight a spine as possible and with the least amount of post-op complications. I also know that the more informed I have the better my dialogue with the surgeon and you have certainly made this possible. What is a SSEP? They did do one x-ray a week after traction started - the really good thing is I can have ongoing conversations with him as he sees Walid almost every day ... yes he does have days off. He is very approachable and I know he has a big heart for these kids. I was kinda dreading talking about the surgery but now with all your info ... i am actually looking forward to it. I can hardly wait to tell you more!! Thank you Ed so much for all your encouragement you are a very special person ... very special!!

  8. #53
    Join Date
    Oct 2011
    Location
    kelowna
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    22
    Quote Originally Posted by rohrer01 View Post
    Thanks for the compliment, but I only learned what I know from being on here! LOL Some topics interest me and I look them up. But honestly, I don't know that much about kyphosis. My aunt has a pretty bad kyphosis, but no one has ever addressed it medically. My family says she got if from slouching because she is very tall and thin, like me. They say that she slouched because she didn't want to be taller than the boys and that's what caused it. I know that's just ignorance on their part.

    As for what kind of questions to ask, I think TiEd pretty much covered the bases:

    * You could ask about blood loss and what methods will they be using for blood conservation. Use of a cell-saver is pretty much standard these days, but there are other techniques that can be employed, such as hemodilution and the use of epogen (a hormone that causes the body to produce more of its own red cells). You can also ask about other issues pertaining to transfusion that you can think of, and what you can be doing now to minimize the need for blood, as it carries its own risks.

    * I agree with Ed on asking about procedure and if it is going to be multistaged. If so, how are they going to control Walid's pain in stage one to reduce anxiety about stage two (if it is multi-staged). This is VERY important if, as you said Walid has some special needs. I have a friend whose autistic son has to be sedated for dental work. If Walid is going to have multiple procedures, will they keep him sedated in between?

    * Something you've probably already discussed and thought about is how much information and mental preparation do you need to give Walid so that his anxiety level doesn't increase. As his mother, you know best. But the surgeon, who has experience with all kinds of kids, might have some good insight on this, too. This includes preparing him to feel really tall and having a different center of balance.

    * Monitering the nerve function was also a good point. You might ask what kind of correction they are looking at (again, I don't know much about how kyphosis affects the spine in terms of spinal cord length and tension on the spine) and how many levels will need to be fused, such as the need for cervical fusion.

    * What, if any, other organs are involved and how will that be monitored. Ed mentioned thoracotomy, which, I believe involves the deflation of one lung and probably removal of a rib in order to reach the spine safely. It seems that I've read about other procedures where they go in through the front of the neck. I don't know if that is out-dated or not.

    *What other procedures will be done, for example, will they be using cages where his discs are?

    * Will he need a body cast or brace afterwards? Not many people do anymore, but some do.

    * Will he still be wearing the halo for a time after surgery? I only mention this because I have a step-cousin, that I believe had to wear a halo for a while post surgery as her deformity was also very severe.

    * What kind of physical therapy will he be doing?

    * What limitations will there be on his activities short and long term?

    * How long will he need to be in the hospital post-surgery? Will he need to go to the ICU?

    * You could ask about diet, as constipation seems to be a huge problem with post-surgical people.

    *You might ask about the risk of nerve bruising and its effects on him and how long do symptoms last IF that occurs.

    * Do the surgeons have a plan B? How long will surgery last?

    * Is he likely to get a thoracoplasty (a procedure to remove residual rib hump after the spine is straightened)?

    That's all I can think of for now. I know some of my questions were redundant as Ed really covered the bases pretty well, He has been through this and I have not. However, I do have friends with special needs kids and things are addressed differently with them. I think much of this is also preparing yourself mentally, which you are doing a great job of, or at least it seems you are. Even if you don't tell Walid all that is going to be done, educating yourself as much as you can (and you are), is a good idea. You are a very pro-active mom. Because of that, Walid is in the best position for a successful recovery. I wish you the very best. If I find out anymore about kyphosis corrective surgeries I will certainly pass on any information that I find with you. Best wishes and (((HUGS))) for both of you!
    Between you and Ed I am feeling really good about meeting with the surgeon. I know that the more questions I have the more information I will receive. You are right about Walid and his special needs ... he gets very anxious and he perseverates on every detail. Being here in the hospital is giving him alot of exposure to children having surgeries and he is always asking lots of questions ... this is good for him because so much of what he is afraid of is really the unknown. Lots of kids and their families are always telling Walid to remember to listen to the doctors and nurses and not to worry he will get excellent care. Plus Walid is developing alot of trust between all the medical staff and really getting to know them well.

    I am going to write out all your questions and sort of group them as much as I can and then just go through them with the surgeon. I am one of those people that forgets all my questions because I get all nervous talking to the surgeon/physician although I have improved a whole lot!! Thanks also for your encouragement and support ... such a source of strength to me and it just shows how the ability to support people can come in many different forms especially with the internet now at our finger tips. Thank you, thank you, Love Debs

  9. #54
    Join Date
    Mar 2010
    Posts
    2,755
    Deb,
    Here is a pretty good link from a reputable source:
    http://emedicine.medscape.com/articl...atment#showall

    I hope you find this helpful. You can look up any unfamiliar terms on the internet. This isn't meant to be scary, as some of the stuff in there might be frightening. I'm not sure what "kind" of kyphosis Walid has, but this covers just about all of it. One thing in particular that I noted is that they do not want to correct the kyphosis to more than 50% due to stretch on the spinal cord. It seemed to also stress the need for blood conservation and preparations for blood loss in advance that include diet, which I'm sure your doctor is well aware of. I didn't find anything about the approach that they are taking with Walid in terms of preoperative traction, so that very well could mean a better correction for him, I don't know.

    I looked up "kyphosis surgery" on the search engine. The Mayo website also has some good, but not as extensive, information. It does have a list of questions to ask your doctor that you might find helpful.

    I'm pretty sure that titaniumed's comment about SSEP monitoring was a nerve monitoring technique that they currently use to avoid the "wake up" test. With the wake up test, they actually wake the patient up mid-procedure and ask them to wiggle their fingers and toes. When I was a teenager, they were anticipating surgery for me and described this part of the procedure to me. With the new monitoring, the need for this type of neurologic testing has been greatly reduced. Again, I hope you find this useful. Just remember that if your surgeon does things differently it's because he's probably more up-to-date on things. I look forward to hearing what the doctor tells you. Have a wonderful day and take care.

    rohrer01

  10. #55
    Join Date
    Mar 2010
    Posts
    2,755
    Just thinking about you and Walid and hoping everything is going okay. Best wishes to you both.

  11. #56
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    Hi Walid and Debbie

    I remember a bump up on the surgery date, and wanted to wish a successful surgery.

    We are all rooting for you here!

    Ed
    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

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