would you have opted for surgery or not?
This is for all the OBPIs that have not had surgery.
I watched several shows with Martin Sheen this week and his arm looks really good. I know he has problems with sup. but other than that looks good. Sometimes I think we should just leave him alone and other times I wish more movement for him even if thru surgery. i don't know with Mod Quad coming up in a couple of months ...
I hate to even think of it.
If you had your choice
Re: If you had your choice
I also hate to think about it. There are so many variables to consider. My son is almost 2 and I feel the exact same way. My Dr. talks as if it is no big deal...he says he'll perform surgery at age 2 1/2. We haven't decided on surgery yet though. I am leaning not towards it. The thought of surgery scares me. It's hard to justify surgery when there is no guarentee. On the otherhand the thought of a successful surgery would be so wonderful for my son. It is a really tough decision to make...to bad we don't have a crystal ball to make our decision easier. Good luck with your childs surgery, I know your decision wasn't made lightly, I commend you.
Re: If you had your choice
Paula - the problem is that you can't predict the future. We have no idea what type of injury Martin Sheen has. Each person's injury is so different and so personal to themselves. You can't compare the kids either. That was a hard lesson for me to learn, especially when some kids get great return and others don't.
-
Kathleen M
Re: If you had your choice
Just wanted to put my 2cents since this is asked on the adult/obpi board...
Surgery is a very personal choice and one that should be researched carefully.
As for Mr.Sheen he moves exactly like I do... and the thing that is hard to get past is that it is not about "how we look" it is really all about function.
I have often said the function I miss most is supination. I look fine but there are many things I cannot do because I cannot supinate...
It is always about function not looks...
I am sure what ever choice you make it will be with your childs best interests at heart. No one can make that decsion for you...
Kath
Surgery is a very personal choice and one that should be researched carefully.
As for Mr.Sheen he moves exactly like I do... and the thing that is hard to get past is that it is not about "how we look" it is really all about function.
I have often said the function I miss most is supination. I look fine but there are many things I cannot do because I cannot supinate...
It is always about function not looks...
I am sure what ever choice you make it will be with your childs best interests at heart. No one can make that decsion for you...
Kath
Re: If you had your choice
I think its hard for someone who has two "normal" arms to understand that although we can't use one arm the same we are still leading happy and fulfilled lives. I think looking at Martin Sheen and wishing for more movemant is foolish. Maybe he doesn't want more movement.
And IF I had a choice??? I do have a choice and I'm choosing to live my life proud of who I am, with what I have. All my life I have belived that everyone is disabled, and I'm lucky that my restrictions are physical. I don't need more function, and surgery is too much of a trade off for me.
Please understand that I'm not angry or frustrated with you, only the idea that everyone who has a "disability" would opt out if they had the chance. There's also the idea out there that if you don't choose surgery you are not doing enough for your child. My own father wishes that they had pushed the surgery issue when I was younger. I disagree with this also, sometimes people need to understand that theres nothing wrong with having a "disability." I'm a better PERSON for it.
Carrie
And IF I had a choice??? I do have a choice and I'm choosing to live my life proud of who I am, with what I have. All my life I have belived that everyone is disabled, and I'm lucky that my restrictions are physical. I don't need more function, and surgery is too much of a trade off for me.
Please understand that I'm not angry or frustrated with you, only the idea that everyone who has a "disability" would opt out if they had the chance. There's also the idea out there that if you don't choose surgery you are not doing enough for your child. My own father wishes that they had pushed the surgery issue when I was younger. I disagree with this also, sometimes people need to understand that theres nothing wrong with having a "disability." I'm a better PERSON for it.
Carrie
Re: If you had your choice
Paula:
I agree with Carrie that there's nothing wrong with having a disability - it's not the end of the world. I've lived what I consider to be a full and productive life with my ROBI. However, if I were an OBPI parent and were given an opportunity to lessen the severity of my child's disability, and if surgery would help in that regard, then I would have to consider surgery very carefully and completely.
Given that each of our injuries are different in some way, it follows that the path to maximum recovery is also different. For some, surgery may be part of the process, for others it may not. Seeking out medical expertise is a necessary part of the process. "How will surgery help my child achieve maximum possible reovery?; what can be expected if surgery is not conducted?; what will my child endure as a result of the surgery and for how long?; how will surgical pain be controlled?; what are the risks of success or failure?; how will success or failure be judged and by whom?; what other risks will my child be subjected to?; who will perform the procedure and how many times in the past year, the past 3 years, the past 5 years has the surgeon performed it and with what result? You've probably asked these questions and more. I'd want solid answers that would help make the very best decision for my child. I hope all this makes sense and is helpful.
John P.
I agree with Carrie that there's nothing wrong with having a disability - it's not the end of the world. I've lived what I consider to be a full and productive life with my ROBI. However, if I were an OBPI parent and were given an opportunity to lessen the severity of my child's disability, and if surgery would help in that regard, then I would have to consider surgery very carefully and completely.
Given that each of our injuries are different in some way, it follows that the path to maximum recovery is also different. For some, surgery may be part of the process, for others it may not. Seeking out medical expertise is a necessary part of the process. "How will surgery help my child achieve maximum possible reovery?; what can be expected if surgery is not conducted?; what will my child endure as a result of the surgery and for how long?; how will surgical pain be controlled?; what are the risks of success or failure?; how will success or failure be judged and by whom?; what other risks will my child be subjected to?; who will perform the procedure and how many times in the past year, the past 3 years, the past 5 years has the surgeon performed it and with what result? You've probably asked these questions and more. I'd want solid answers that would help make the very best decision for my child. I hope all this makes sense and is helpful.
John P.
Re: If you had your choice
thanks John.
I just want whats best for my son and I know surgery is but it is soo hard seeing him in the hospital.
Plus, we had a bad experience with his primary, he got a really high fever peaked at 105 and they had a hard time keeping it down and did alot of invasive painful tests on him and could not find the reason for the fevers. He had to stay in the hospital about 4 days extra. Thats why I am scared of another surgery, I don't want to have him or us go thru that again. That's why I asked the older OBPIs their opinion. If it were up to me I would say no more but I worry about his future and I THINK that he would want for me to do all I can to help him achieve as much movement as possible, even if that means surgery. I know this question has probably been asked before I guess I just need reassurance.
Paula
I just want whats best for my son and I know surgery is but it is soo hard seeing him in the hospital.
Plus, we had a bad experience with his primary, he got a really high fever peaked at 105 and they had a hard time keeping it down and did alot of invasive painful tests on him and could not find the reason for the fevers. He had to stay in the hospital about 4 days extra. Thats why I am scared of another surgery, I don't want to have him or us go thru that again. That's why I asked the older OBPIs their opinion. If it were up to me I would say no more but I worry about his future and I THINK that he would want for me to do all I can to help him achieve as much movement as possible, even if that means surgery. I know this question has probably been asked before I guess I just need reassurance.
Paula
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: If you had your choice
Dear Paula,
Good luck with your decision. We are trying to make the same one about the mod quad for our daughter. Right now, we've decided to hold off on it while we get second and third opinions, and I understand that time is not of the essence as much as it would be with the nerve grafting, as long as someone is watching for signs of shoulder disloction and degeneration. So, maybe you could possibly put it off a few months while you get more comfortable with it? Just a thought.
Best wishes.
Good luck with your decision. We are trying to make the same one about the mod quad for our daughter. Right now, we've decided to hold off on it while we get second and third opinions, and I understand that time is not of the essence as much as it would be with the nerve grafting, as long as someone is watching for signs of shoulder disloction and degeneration. So, maybe you could possibly put it off a few months while you get more comfortable with it? Just a thought.
Best wishes.