I am looking for insight from people/children who had the mod quad surgery. My son has not had any surgeries, yet. I am looking for feedback to help me make my final decision on if we should go forth with surgery or not.
Also, I am looking for who is "best" surgeon with the best results. Any direction or insight will be much appreciated.
looking for adise on mod quad
Re: looking for adise on mod quad
Hi Antoinette
My name is Mare my son Frankie is 14yr old and had the mod quad this past Nov with Dr Nath. How old is your child?? I have to tell you its a long but not so painful splinting period and therapy at least 4 times a week when the splint comes off. Frankie before mod quad could not raise his arm at all he would bend backwards and push out his chest just to get it to 50 degrees now he can raise it to 90 degrees, his shoulders were uneven the (left) bpi arm was up almost to his ear he is now even and the neck and shoulder pain is gone. One things that we didn't expect was that he got finger movement which he didn't have before so for us it was a success I only wish I had done it when he was younger he might have gotten more out of it. Due to his size, the weight of his arm,and the atphoyed muscles which none of it would have been a problem if he was little plus you can't take the splint off even to bath unless someone is holding the arm up needless to say my son at 14 refused to bath for 16 weeks. Hope this helps Mare
My name is Mare my son Frankie is 14yr old and had the mod quad this past Nov with Dr Nath. How old is your child?? I have to tell you its a long but not so painful splinting period and therapy at least 4 times a week when the splint comes off. Frankie before mod quad could not raise his arm at all he would bend backwards and push out his chest just to get it to 50 degrees now he can raise it to 90 degrees, his shoulders were uneven the (left) bpi arm was up almost to his ear he is now even and the neck and shoulder pain is gone. One things that we didn't expect was that he got finger movement which he didn't have before so for us it was a success I only wish I had done it when he was younger he might have gotten more out of it. Due to his size, the weight of his arm,and the atphoyed muscles which none of it would have been a problem if he was little plus you can't take the splint off even to bath unless someone is holding the arm up needless to say my son at 14 refused to bath for 16 weeks. Hope this helps Mare
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richinma2005
- Posts: 861
- Joined: Thu Sep 29, 2005 12:00 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.
Re: looking for adise on mod quad
Hi Antoinette,
Secondary surgeries are performed by many excellent BPI doctors. As far as the "best" doctor is concerend that will be up to you to determine for yourself. One "best" doctor to one family may not be the "best" to another. I would recommend looking through the medical resources directory,
http://ubpn.org/medicalresources/us-bpi.html
where many of the top BPI docs (docs recognized as being experts in BPI) have filled out a questionairre to give you an idea of their background. After that, you should call and/or email the physicians to get an idea about how they interact with you and your child. Then I would recommend seeing two minimum and as many as you can afford to see after that. Your "best" doctor will eventually find their way to the top through your interview process, and questions. And of course gut instinct seems to play a role in these matters.
Hope you find the doctor that is "best" for your child!
Good Luck
-rich
Secondary surgeries are performed by many excellent BPI doctors. As far as the "best" doctor is concerend that will be up to you to determine for yourself. One "best" doctor to one family may not be the "best" to another. I would recommend looking through the medical resources directory,
http://ubpn.org/medicalresources/us-bpi.html
where many of the top BPI docs (docs recognized as being experts in BPI) have filled out a questionairre to give you an idea of their background. After that, you should call and/or email the physicians to get an idea about how they interact with you and your child. Then I would recommend seeing two minimum and as many as you can afford to see after that. Your "best" doctor will eventually find their way to the top through your interview process, and questions. And of course gut instinct seems to play a role in these matters.
Hope you find the doctor that is "best" for your child!
Good Luck
-rich
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Connie&Andrew
- Posts: 201
- Joined: Mon Nov 05, 2001 9:32 am
Re: looking for adise on mod quad
Hi,
My son is now almost 8 years old. He had the mod quad done at 28 months. He had it done at the Brachial Plexus Clinic at Texas Children's Hospital (Which is no longer operating).
We were very hopeful when he was very small that he would not need any surgeries. He seemed to have only a moderate injury as compared to a severe one. But he seemed to hit a plateau in his recovery at about 18 months or so. He could not lift his arm above his head and he could not touch his ears or the back of his head at all.
We were very pleased with the results from the surgery. It greatly increased his range of motion and did not seem to limit his internal rotation any more than it already was. He has very good function now. He has a hard time reaching behind his back with his affected arm, but he can get it back part of the way and can pull it back with the other hand.
At this time, most people would not know that he has any problems, but we are still working with a therpist on some issues.
Good luck with your decision. I remember how hard that decision was. My recommendation is to just do as much research as possible and talk to as many people and doctors as you can.
Good luck
Connie
My son is now almost 8 years old. He had the mod quad done at 28 months. He had it done at the Brachial Plexus Clinic at Texas Children's Hospital (Which is no longer operating).
We were very hopeful when he was very small that he would not need any surgeries. He seemed to have only a moderate injury as compared to a severe one. But he seemed to hit a plateau in his recovery at about 18 months or so. He could not lift his arm above his head and he could not touch his ears or the back of his head at all.
We were very pleased with the results from the surgery. It greatly increased his range of motion and did not seem to limit his internal rotation any more than it already was. He has very good function now. He has a hard time reaching behind his back with his affected arm, but he can get it back part of the way and can pull it back with the other hand.
At this time, most people would not know that he has any problems, but we are still working with a therpist on some issues.
Good luck with your decision. I remember how hard that decision was. My recommendation is to just do as much research as possible and talk to as many people and doctors as you can.
Good luck
Connie
Re: looking for adise on mod quad
hello, our daughter age 5, is going to have the Mod Quad also called a muscle transfer i think, with Dr. Kozin, in Philly, PA in less than 2 weeks(Oct 2). We will be happy to let you know how it goes & send pictures to you.
As we checked out 3 doc.s (dr. Kozin in PA; dr. nath in TX & dr. grossmen in Fl (there are more out there, please check the boards) before we went with Dr.Kozin In my opnion, I can tell you picking the best is not really reasonable, as they are ALL really good
Best of Luck!
As we checked out 3 doc.s (dr. Kozin in PA; dr. nath in TX & dr. grossmen in Fl (there are more out there, please check the boards) before we went with Dr.Kozin In my opnion, I can tell you picking the best is not really reasonable, as they are ALL really good
Best of Luck!Re: looking for adise on mod quad
Also Type in Mod Quad or mucesle transfer, click on the above "Search Forum" and it will give you past things people have talked about of the surgery.
Re: looking for adise on mod quad
Also it is called Tendon Transfer.
Antoinette, I mailed you privately. This is a very difficult topic to discuss candidly on these boards without upsetting anyone!
Kate
Antoinette, I mailed you privately. This is a very difficult topic to discuss candidly on these boards without upsetting anyone!
Kate
Re: looking for adise on mod quad
Please believe that this is very sour/which doctor to chose/ subject! go with you heart!!!!!!!!!! we are going w Nath!!! please research and remember one person's opinon is just that! really become informed!!!!!!!!!!
good luck & God bless
good luck & God bless
Re: looking for adise on mod quad
Boy what a can of worms you unknowing have opened! Asking who we think is the best surgeon with the best results can get people really going! And that is because we all have our own opinions! What I have found works best for me (I mean our family/son) is to get more than one opinion by several doctors (usually well known ones but not always).
How old is your son? Has surgery ever been recommended? What are your current hesitations regarding surgery? What are the reasons you think surgery would be a good option for your son? If your son is older does he have an opinion on the matter?
Maybe we can help you "think" it out.
How old is your son? Has surgery ever been recommended? What are your current hesitations regarding surgery? What are the reasons you think surgery would be a good option for your son? If your son is older does he have an opinion on the matter?
Maybe we can help you "think" it out.
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Antoinette
- Posts: 5
- Joined: Thu Sep 20, 2007 12:01 am
Re: looking for adise on mod quad
Boy what a can of worms you unknowing have opened! Asking who we think is the best surgeon with the best results can get people really going! And that is because we all have our own opinions! What I have found works best for me (I mean our family/son) is to get more than one opinion by several doctors (usually well known ones but not always).
Response: I am hoping to open up an can worms because I am working on informed consent. If I want an good surgeon or ob doctor, so I ask around. Someone pointed me this way so asked my questions. I am working on get different consultations.
How old is your son? Has surgery ever been recommended? What are your current hesitations regarding surgery? What are the reasons you think surgery would be a good option for your son? If your son is older does he have an opinion on the matter?
Matthew is four. It medically explain his limitation-I can't. He wasn't a nerve graph candidate at 6 months. At six months, we were told he could be evaluated to mod quad @ 18 months. At 18 months, we lost contact with the clinic. Now, we are looking into our options.
As for any surgery there are risk, I don't want to sign up for a surgery that will create more problems or pain.
Maybe we can help you "think" it out.
Any info will be much appreciated. I am so grateful for this web site and everyone's interest.
Response: I am hoping to open up an can worms because I am working on informed consent. If I want an good surgeon or ob doctor, so I ask around. Someone pointed me this way so asked my questions. I am working on get different consultations.
How old is your son? Has surgery ever been recommended? What are your current hesitations regarding surgery? What are the reasons you think surgery would be a good option for your son? If your son is older does he have an opinion on the matter?
Matthew is four. It medically explain his limitation-I can't. He wasn't a nerve graph candidate at 6 months. At six months, we were told he could be evaluated to mod quad @ 18 months. At 18 months, we lost contact with the clinic. Now, we are looking into our options.
As for any surgery there are risk, I don't want to sign up for a surgery that will create more problems or pain.
Maybe we can help you "think" it out.
Any info will be much appreciated. I am so grateful for this web site and everyone's interest.