United Brachial Plexus Network, Inc.

Having had a surgery that was not successful, I am glad that it was my decision and not my parents! I think I would have felt terrible if my parents made the choice and then the surgery didnt work. Instead I was given the right to say yes or no to each and every one of my surgeries and so if they work, I am beyond excited and if they didnt well, thats ok too, I guess it was meant to be that way. I will be having my 5th surgery next week that again I chose to go ahead with.

From my experience, parents blame themselves incredibly even though this injury was in no way the fault of the parent. Making a surgery choice for something that can wait a year or two and having the surgery be unseccessful seems like it would be even harder on the parent. Now I am not a parent yet so I dont know what its like to make these choices. I just know from my own experience, I am glad and extremely thankful that my parents let the choice of surgery be mine even at the young age of 5 yers old. Thats when I said yes to my first surgery but then I was on a waiting list then I got sick day before surgery... and didnt end up having my first surgery until I was almost 7.

I would tend to believe anything after age three that can wait with out causing the child set back should be placed on the back burner. I only say after the age of three because that is when most children start to remember things and being forced to have a surgery that they dont want could cause some damage later.

Just my opinions and experiences.
Hugs,
Amy
20 years old ROBPI from MN
hope16_05@hotmail.com

Wow, seems like people took offense to what I said. Oh well, not the first or the last time.

What I said has NOTHING to do with Dr. Nath or TT.

Amy, I respect your opinion and appreciate your insight.
But I was just making the point that not everyone (well maybe just me) feels comfortable letting their young child make what is a huge decision.

I don't feel guilty about the injury, I don't want to make my son perfect - I just want to offer him the best opportunity in life.

As far as waiting, who is to say whether or not it will cause a setback. I made the decision to have primary for my son when he was 3 months old. He got it done at 5 moths. He had a pretty bad injury (stretchs and tears) but has only had one surgery since at age 3 and now is 6. He has 80-90% use of his arm. I know for sure that my early decision for primary helped immensely. I have seen children with similiar injuries that waited for surgery and didn't the same success we had with our son.

Carolyn, no need for bold print. I can read just fine.
No need to be offended by what I said. I am allowed to my opinion too, right?
Its great to have first-hand experience as someone with a BPI. I appreciate your insight as well.
But unless you have a child yourself, than you haven't walked in my shoes and don't know what its like to forced to make a difficult decision.

I respect everyone else opinion, but it appears I'm not allowed to have mine.

Maia fights me on brushing her teeth, taking her allergy drops, going to sleep on time, doing her homework, brushing her hair, taking baths & showers, getting dressed in matching clothes or making it on time anywhere, wearing her splint, doing her exercises.... so how would she be able to make a surgery decision? Amy - you are and have always been (since I've known you) a very mature young lady. For you, everything has worked out within your own independent methodology - but other kids are different and need different parenting. Lou and I make decisions for Maia and until she matures and has an understanding of what it is and what it's not, we will continue to make decisions for her. Of course as she grows older, we inform her more and more and now we include her in the decision process, but we are still making the final decision for her.

I agree that we have to make difficult decisions for our children, and I would not necessarily give Joshua's input "veto power" if a doctor were to suggest surgery for him now (when he's old enough to want to have a say, but not old enough to understand the implications). I think there are surgeries which have time-tables attached. Primary surgery is definitely one of them. I think ACR is also turning out to be one where "the earlier the better" also applies. Some parents might feel, based on the evidence and input from their own specialists, that other surgeries also fall into this category. I would not want to reduce the chances for a successful surgery by waiting if everything else suggested the need. However, Amy is definitely right in that as a child gets older, their cooperation during post-op rehab becomes critical. But I also need my child to cooperate with brushing his teetch, taking his medicine, etc.

Kate

Matt's Dad,

The only problem I had with your post is your "some parents want more" comment. I don't think that is a fair way to phrase the difference between parents. I sincerely doubt there is a here who *wants* "less" for their kids. We all have different comfort levels the risks of surgery, especially when taking those risks on behalf of someone else. We have different expectations for how sure a specific outcome needs to be, how comfortable we are with general anesthesia, concerns over functional losses, trust in the knowledge and omniscience of doctors, belief that "something better might come along" (thus making sense to wait), etc etc. We have children with different personalities (some able to tolerate less "fixing" than others) and we may very well have different goals for our children (including different ideas of how big a "topic" their arm should be in general).

To phrase it simply in terms of you want more for your child impliles those of us who are more conservative must want less. That is the part which I find offensive.

Kate

"The only problem I had with your post is your "some parents want more" comment. I don't think that is a fair way to phrase the difference between parents. I sincerely doubt there is a here who *wants* "less" for their kids. "

Kate, well put.
It was my mistake to say it the way I did.

What I should have said is I don't feel comfortable letting a young child decide.

That was the phrasing that caught my eye too. But, I don't think Matt's dad meant it like someone wants less for their child. It's just when you think something in your head sometimes it doesn't sound the same when you write it. The biggest problem I see here is that the forms of treatment for this injury are so subjective. If you go to a dr and he believes in a certain treatment then that may be the treatment you follow. The problem is there is no right and wrong (black and white) to this injury. Just as each injury is different each suggested treatment and out come is different. It's not like they can say "well you have a BPI so you need x,y and z". It's well you have a BPI and you have all these choices and some may or may not work for your injury. But, some have worked for others and some have regressed. So, it's not like saying "hey you have a broken arm lets cast it for 6 weeks and all will be well". I for one would be leary about an operation that may have to be redone. I would want to know what part is failing and how much regression kids have after all is done. I think I may continue to look for options if I knew this ahead of the surgery. But again it all depends on the injury. If it was severe and they thought this was the only or best chance I would think long and hard about having it done. Just like in Dustin's case, he has no elbow bend in gravity at all. They have given us several choices to correct the problem. But what is best? I wish it were that easy. He could have tricep transfer but then he loses the function of the tricep. This would be the easiest solution in terms of surgery. But, would it be best. He could have Snap but that may require the wrist flexion to bend the elbow. Again not sure this would be best. Gracilis is another choice. Which is what we have decided is the best option for Dustin. I know others have done the other surgeries and because we opt for Gracilis transfer does not mean they were wrong or did less. It just means that with the info we have and what we hope for we believe this is the best choice for us. Just as everyone is making the best choice for the injury and outcome that they have. I am sure as parents we all want the best for our children. And no matter which course you choose it has to be right for you. I am lucky in that Dustin is now 20 and we have discussed all the options together.
Sue

Kath,
I am glad you brought up the very real fact that the Secondary Injuries of OBPI are Emotional Issues for bothChildren and Parents. There are many variations in how these affect us all individually all of our lives.

HUgs all around,
Carolyn J


Message was edited by: Carolyn J

I always enjoy reading different views on the whole BPI thing. I just wanted to quickly comment on one point that was mentioned here resulting in different opinions. As far as letting the child make their own decision on having a surgery...
First, we have to remember that this differs so much with age. Huge difference between ages 8 vs say 12. Just those 4 years make a huge difference even though the age gap is not large. For my child, if I think a surgery is necessary and that it will help her, and if I feel it is needed then I will agree to a surgery and have it done for her. Will my thoughts be the same when she turns 12 or so? Probably not. At 12, they are old enough to give their input on something that is being done to THEIR body. We all know this isn't a life or death situation. We all know that when were 12 we would have wanted a say in surgery as well if it was on our bodies. I wouldn't necessarily agree with her if she was 12 and I thought she needed a surgery and she didn't want it. I would talk to her about it. Bring her to different doctors for her to hear what is best. Try to make her understand why it would be a wise decision for her to have that surgery, etc. At the age of 12 (even though she will be young and not an adult yet)I honestly don't think I would push her. I think the final decision would be hers. Now, Ella is 5 1/2 right now so my opinions change. I am in charge right now b/c she simply doesn't understand anything at this point about surgery. I believe the 12 yr mark is a good time to let them begin to have a say in the decision to go for or not go for a surgery. Under that age...you are risking them not fully understanding what is going on and them not understanding the pros and cons of the overall situation.
~Krista~


Message was edited by: Krista (mom to Ella)

> Hi Everyone. My 4 year old son Michael sustained a
> OBPI at birth. Upon our neurologist's suggestion we
> took Michael to see Dr Waters back in 2003 when he
> was about 6 months old. After several visits and
> results of his MRI, it was determined he needed
> surgery. Thankfully he didn't have any ruptured
> nerves but he needed some shoulder reconstruction and
> a tendon transfer. After the surgery we saw some
> noticeable improvements and we involved him with PT,
> OT and aquatic therapy. I would say for the past 1-1
> 1/2 we have been seeing a downward trend. We had
> another MRI done and went back to Dr Waters for our
> annual visit. Not much was said but I didn't see all
> the positive attitudes from his staff that I had
> first seen on previous visits. I also brought my Dad
> with me to see what his opinion was. He sensed the
> vibes also. It pretty much has become a wait and see
> type of stance right now. Needless to say I was
> pretty upset leaving that day.
>
> My physical therapist told my husband and I of a
> workshop that Dr Nath was doing in Albany. My husband
> thought it couldnt hurt to have a different pair of
> eyes evaluate Michael. ALso I thought maybe we would
> learn of different techniques in therapy to help
> Michael. Of course I didnt expect to hear his
> suggestion of another surgery-- Triangle Tilt. That
> threw me for a loop because I was afraid of putting
> MIchael thru this again and it not turning out good.
> I guess what I am looking for is feedback from
> m anyone who has had this type of surgery on their
> children, positive or negative. I understand at this
> time this type of surgery is only performed by DR
> Nath, and I believe he said last night that about 125
> surgeries have been performed. Also I know there
> isnt much data beyond the 5 year mark since this is a
> relatively new technique. I have an appt with Dr
> Waters in a week and 1/2 and I wanted some data in my
> head so I can discuss it with him. Any info given
> would be greatly appreciated. Also if Dr Nath is
> going to have a workshop in your area, I would
> strongly suggest to everyone to go. Even if you dont
> intend to go thru the surgery, the information and
> the people you meet there is invaluable. My email is
> Lady527@aol.com. Thank you again to anyone who took
> the time to read this!!!!
>
> Margie

In regards to your original post,
My daughter had the Triangle Tilt done a little over 2 years ago (she was 5 years old at the time) and has had excellent results with it. She has achieved a lot that we were not able to get through therapy and other non-invasive ways. In our case, I can say the surgery was a success and we continue to have routine follow-up and no plans for any further surgeries at this time.
We agonized over the decision to do surgery at that time due to it being a new procedure, but after waying the pros/cons (as pertains to Peyton and our situation)we decided it was right for us.
I have the philosphy that if no one is willing to try something new, there would still not be any surgeries out there to help our children. (this also goes for new therapy techniques, taping, braces, etc...) That is not to say that we would proceed with something if we felt there were the possibilites of more risks then benefits. You can never ask too many questions, or get too many opinions from different prctioners.
Ultimately, each situation is individual and the decision made as to what you feel is best for your child. I think we can only learn from others experiences as we help our children, and that means the good, the bad or the different.
Good luck, and I hope you are able to get your answers when you go in for your appointment.