My 21 month old daughter was recommended to have the Mod Quad by TCH, although she did not need to have the nerve surgery. Since this may be her first surgery, we are of course very nervous and worried about our decision. We have had her evaluated by three Dr's and have gotten conflicting opinions as to the timing of the surgery, and the severity of her injury. We have drilled her regular therapists (OT and PT), and will be seeing her neurologist next week. We are not opposed to surgery by any means if it means are daughter will benefit, but we also don't want to just rush into a decision for surgery. TCH is the only place that has recommended surgery at this time. Her therapists and the other surgeons we saw felt that since she is still responding well to therapy, and has excellent passive ROM - waiting would be better so that she can participate more and understand the recovery process better. 3-5 years was the timeframe that was recommended.
My questions for those out there are:
what factors did you consider when determing the timing of the surgery?
If you chose not to have surgery, why not?
If you chose to delay surgery why?
How did you handle conflicting recommendations?
If this was your child's first surgery, how was the recovery phase, what age did your child have it, what convinced you that it was the right thing to do?
Any help or information is greatly appreciated.
Lisa
Anyone have Mod Quad w/o nerve surgery
Re: Anyone have Mod Quad w/o nerve surgery
Lisa -
Have you asked TCH if the surgery can wait? and why it can or cannot wait? Have you talked to them yet about what the other bpi specialists have said?
now for your questions...
(1) what factors did you consider when determing the timing of the surgery?
Maia was severely contracted and it was explained to us that contractures appear because of muscle imbalances and unless the muscle imbalances were corrected, that it would keep on contracting. That therapy would not help with this severity of contracture because therapy could be one hour a day and it would be contracting 23 other hours of the day. If the contractures were left to keep on doing their thing, we might have seen secondary issues crop up fast like scoliosis, etc. Maia already had structural involvement throughout her body so we didn't want to chance the start of scoliosis. We also did it to get more shoulder flexion range (arm up over head) so that she could start creating a more normalized shoulder joint. The socket part in our children does not get rounded out if they don't have full shoulder range of motion- so I wanted to try our hardest for her to get a more normalized socket - to try and reduce problems later on in life. We chose quality of life reasons over movement. The movement that came with it was an added gift.
Maia was the first child they did under two years of age. They did mod quad on her at age 19 months. They wanted to do this earlier because they wanted to start doing this before they started seeing too much joint deformity..catch it before it happens idea. And now they are doing them earlier - I think as early as 12 months.
(2) If you chose not to have surgery, why not?
N/A
(3) If you chose to delay surgery why?
We delayed her primary surgery by 3 months because of fear and we felt that had we not delayed she would have had much more gain. (when comparing her recovery to other children, younger than her, having injuries that were worse) We didn't want to make that mistake again.
(4) How did you handle conflicting recommendations?
We kept on asking TCH and others questions (never ending) until we understood it completely and had a gut feeling that we were doing the right thing. Gut feelings are important - whether they point you in the direction of doing surgery or NOT doing surgery.
(5) If this was your child's first surgery, how was the recovery phase, what age did your child have it, what convinced you that it was the right thing to do?
When a child is very young, every surgery is like the first surgery because it's so different for them each time. Their memories are more cellular memories versus tangible memories (thinking of primary at 7 months - maia does not remember this in a conscious way but certainly does in some manner in a sub conscious way). The recovery phases differ in each child based on so many things. No two children recover the same way. Some have no pain, some have some pain, and some have a LOT of pain. Some sleep good, some don't. I will say something though - most kids, once they are used to the splint, (it's reported on here) that they play 'as normal' - the splint doesn't stop them.
What convinced me that it was the right thing to do? What we learned by educating ourselves and mostly our faith in God and faith that we were making a good decision based on sound reason for our child.
Each person comes to their own conclusions. Each person's faith leads them in their own personal travel. Once you have made the decision (no matter what the decision is), you will know when you have made the right decision because you will have a sense of peace over that decision.
If you decide to do surgery - you will feel peace and it will soon be replaced with pre surgery tension. If you decide not to do surgery - you will feel peace and then you will feel the tension of making sure you do all the 'work' necessary to bring your daughter through the possibility of getting past it (therapy, etc.) Neither side is a cake walk.
I wish you and your husband much courage and strength as you try to figure this out. It's very hard - but you will make the right decision for your family - no matter what that decision is.
-francine
Have you asked TCH if the surgery can wait? and why it can or cannot wait? Have you talked to them yet about what the other bpi specialists have said?
now for your questions...
(1) what factors did you consider when determing the timing of the surgery?
Maia was severely contracted and it was explained to us that contractures appear because of muscle imbalances and unless the muscle imbalances were corrected, that it would keep on contracting. That therapy would not help with this severity of contracture because therapy could be one hour a day and it would be contracting 23 other hours of the day. If the contractures were left to keep on doing their thing, we might have seen secondary issues crop up fast like scoliosis, etc. Maia already had structural involvement throughout her body so we didn't want to chance the start of scoliosis. We also did it to get more shoulder flexion range (arm up over head) so that she could start creating a more normalized shoulder joint. The socket part in our children does not get rounded out if they don't have full shoulder range of motion- so I wanted to try our hardest for her to get a more normalized socket - to try and reduce problems later on in life. We chose quality of life reasons over movement. The movement that came with it was an added gift.
Maia was the first child they did under two years of age. They did mod quad on her at age 19 months. They wanted to do this earlier because they wanted to start doing this before they started seeing too much joint deformity..catch it before it happens idea. And now they are doing them earlier - I think as early as 12 months.
(2) If you chose not to have surgery, why not?
N/A
(3) If you chose to delay surgery why?
We delayed her primary surgery by 3 months because of fear and we felt that had we not delayed she would have had much more gain. (when comparing her recovery to other children, younger than her, having injuries that were worse) We didn't want to make that mistake again.
(4) How did you handle conflicting recommendations?
We kept on asking TCH and others questions (never ending) until we understood it completely and had a gut feeling that we were doing the right thing. Gut feelings are important - whether they point you in the direction of doing surgery or NOT doing surgery.
(5) If this was your child's first surgery, how was the recovery phase, what age did your child have it, what convinced you that it was the right thing to do?
When a child is very young, every surgery is like the first surgery because it's so different for them each time. Their memories are more cellular memories versus tangible memories (thinking of primary at 7 months - maia does not remember this in a conscious way but certainly does in some manner in a sub conscious way). The recovery phases differ in each child based on so many things. No two children recover the same way. Some have no pain, some have some pain, and some have a LOT of pain. Some sleep good, some don't. I will say something though - most kids, once they are used to the splint, (it's reported on here) that they play 'as normal' - the splint doesn't stop them.
What convinced me that it was the right thing to do? What we learned by educating ourselves and mostly our faith in God and faith that we were making a good decision based on sound reason for our child.
Each person comes to their own conclusions. Each person's faith leads them in their own personal travel. Once you have made the decision (no matter what the decision is), you will know when you have made the right decision because you will have a sense of peace over that decision.
If you decide to do surgery - you will feel peace and it will soon be replaced with pre surgery tension. If you decide not to do surgery - you will feel peace and then you will feel the tension of making sure you do all the 'work' necessary to bring your daughter through the possibility of getting past it (therapy, etc.) Neither side is a cake walk.
I wish you and your husband much courage and strength as you try to figure this out. It's very hard - but you will make the right decision for your family - no matter what that decision is.
-francine
Re: Anyone have Mod Quad w/o nerve surgery
Lisa,
I have a son who is 14 months old. He has not had any surgeries. I understand your desire to learn more. At one point recently we thought Ian was going to be recomended for surgery. His surgeon decided to wait on this option. The reason my doctor decided to wait is that he wants Ian to recover as much on his own as possible. They are keeping a close watch on his recovery... I believe when they see it being to platue then surgery will be recommended.
I understand that TCH does the Mod-Quad earlier to help ensure that the shoulder joint is forming to it's best ability. I plan to have my son go through some diagnostic testing (ex-rays, MRI, ect) when we get to the point you are at. This will help me to "see" how well that joint is forming. And I think if it appears to be developing well I will wait as long as I can before I go a head with a surgery that moves muscles.
I think it is great that you have gotten some second opinions about this issue. In your case it is hard because they don't all agree!! I hope you can find the info you are looking for and I hope I have helped you at least a little.
Blessings,
Kristie
I have a son who is 14 months old. He has not had any surgeries. I understand your desire to learn more. At one point recently we thought Ian was going to be recomended for surgery. His surgeon decided to wait on this option. The reason my doctor decided to wait is that he wants Ian to recover as much on his own as possible. They are keeping a close watch on his recovery... I believe when they see it being to platue then surgery will be recommended.
I understand that TCH does the Mod-Quad earlier to help ensure that the shoulder joint is forming to it's best ability. I plan to have my son go through some diagnostic testing (ex-rays, MRI, ect) when we get to the point you are at. This will help me to "see" how well that joint is forming. And I think if it appears to be developing well I will wait as long as I can before I go a head with a surgery that moves muscles.
I think it is great that you have gotten some second opinions about this issue. In your case it is hard because they don't all agree!! I hope you can find the info you are looking for and I hope I have helped you at least a little.
Blessings,
Kristie
Re: Anyone have Mod Quad w/o nerve surgery
Thanks so much for all your input, it is all very helpful.
I did ask TCH if surgery could wait and they did not advise it because of habits and improper wearing of the joint. One of the second opinions was not so concerned about the joint issues at this juncture because she does have the passive ROM. I have not gone back to TCH with what the other Dr's. have said yet - we are still waiting on one more opinion. I plan to call TCH next week after we've spoken to all the Dr's and go through another round of questions that have resulted from all these other Dr visits and the input we've received here.
As far as range, I have reviewed the tape again that we sent, and asked her PT to review it as well. A few months have passed since it was made, and my daughter is definately doing much more. Both therapists seem to think that her range now is very high functional to low normal range for both internal and external rotation.
I have no doubt that the surgery could benefit my daughter once therapy benefits slow down - but she's still doing so well with it that I'm having a really hard time being convinced that NOW rather than later is the right thing to do. I will get more information on the joint health, through MRI/x-rays and hopefully that will help make the decision a little clearer.
The reasons why timing is such a critical issue for me (other than doing what is best for my daughter) is that her speech is delayed and is just starting to come in, albeit very slowly. I'm afraid (as well as her therapists) that a surgery at this juncture would be a major setback to her speech. Also, my second child will be born right when her splints would come off and I'm afraid that I may not be able to provide the level of therapy that is so critically needed once the splints come off with a newborn.
I did ask TCH if surgery could wait and they did not advise it because of habits and improper wearing of the joint. One of the second opinions was not so concerned about the joint issues at this juncture because she does have the passive ROM. I have not gone back to TCH with what the other Dr's. have said yet - we are still waiting on one more opinion. I plan to call TCH next week after we've spoken to all the Dr's and go through another round of questions that have resulted from all these other Dr visits and the input we've received here.
As far as range, I have reviewed the tape again that we sent, and asked her PT to review it as well. A few months have passed since it was made, and my daughter is definately doing much more. Both therapists seem to think that her range now is very high functional to low normal range for both internal and external rotation.
I have no doubt that the surgery could benefit my daughter once therapy benefits slow down - but she's still doing so well with it that I'm having a really hard time being convinced that NOW rather than later is the right thing to do. I will get more information on the joint health, through MRI/x-rays and hopefully that will help make the decision a little clearer.
The reasons why timing is such a critical issue for me (other than doing what is best for my daughter) is that her speech is delayed and is just starting to come in, albeit very slowly. I'm afraid (as well as her therapists) that a surgery at this juncture would be a major setback to her speech. Also, my second child will be born right when her splints would come off and I'm afraid that I may not be able to provide the level of therapy that is so critically needed once the splints come off with a newborn.
Re: Anyone have Mod Quad w/o nerve surgery
my daughter anna now two years never had nerve surgery.. three out of the four docs she saw advised us not too... we went with their dicision.. she had the mod quad on hallowen of last year at 18 months.. the mod quad was the one thing those four docs agreed on.. there was a conflict on at what age..why at 18 months we figured, hoped she wouldnt remember the surgery..( i don't remember anyhing when i was under two) how did she do?? great!! the day we got discharged from the hospital, at the hotel room she was climbing on her daddy laying on the floor.. I was concerned about her sleeping, shes a tummy sleeper.. i gave her a extra pillow and with in a few days she had it all figured out.. with in a week at home she was climbing up onto our coffee table splint & all..
kids are amazing..
she actually shared a room at the hospital with another little girl who was only 11 months (I think) having the mod quad done.. in hind sight I believe we did the right thing not having the nerve surgery, after her mod quad the doc said her nerves looked good.. so i guess you should listen to what each doc is telling you, pray a bunch, then listen to your heart..
hope this helps you..
marg
kids are amazing..
she actually shared a room at the hospital with another little girl who was only 11 months (I think) having the mod quad done.. in hind sight I believe we did the right thing not having the nerve surgery, after her mod quad the doc said her nerves looked good.. so i guess you should listen to what each doc is telling you, pray a bunch, then listen to your heart..
hope this helps you..
marg
Re: Anyone have Mod Quad w/o nerve surgery
In a lot of ways the question doesn't apply to us but I just wanted you to think about another thing. Jameson was 10 when he had the modquad done(no nerve surgery) and by then his brain was so adapted to Not using the arm that eventhough he got more movement back he still didn't use it! I think the younger the better because they can retrain their brains easier.
Something to think about.
T.
Something to think about.
T.
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Re: Anyone have Mod Quad w/o nerve surgery
Hi Lisa,
My daughter also did not need primary surgery. Our Dr. perfered not to do secondary surgery until the kids are 3-5 years old. However, Madison's shoulder was becoming dislocated so in order to prevent further damage to her socket/humerous we had the tendon/muscle transfer done when she was two. She had no problems with the surgery or recovery, but every child is different as every injury is different. You know your child the best, just absorb all the information thats available through this network and you'll make the best decision for your child and family.
Take Care
Dawn
My daughter also did not need primary surgery. Our Dr. perfered not to do secondary surgery until the kids are 3-5 years old. However, Madison's shoulder was becoming dislocated so in order to prevent further damage to her socket/humerous we had the tendon/muscle transfer done when she was two. She had no problems with the surgery or recovery, but every child is different as every injury is different. You know your child the best, just absorb all the information thats available through this network and you'll make the best decision for your child and family.
Take Care
Dawn