Originally posted by walid
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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
Ed49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA 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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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.
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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!
Ed49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA 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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Originally posted by walidNext 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.
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!Be happy!
We don't know what tomorrow brings,
but we are alive today!
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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.
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Originally posted by titaniumed View PostThx 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
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Originally posted by rohrer01 View PostThanks 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!
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
♥
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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.
rohrer01Be happy!
We don't know what tomorrow brings,
but we are alive today!
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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!
Ed49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA 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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