no secondary surgery

[thetylers]

Here's another link to supplement Kathleen's link. This one is dated but still has some current specialists on in:
http://www.nbpepa.org/special.htm

Here's an example (my opinion) of two schools of thought. Some clinics will take a less aggressive approach as to when to perform a surgery, as there is international disagreement on the perfect timing of them. Also some leverage the 50+ years of orthapedic experience in treating the later types of surgeries vs. less studied approaches.

I think there is a balance between both and I think it's even harder to make these decisions when we're looking at our children affected by a BPI. For us we've got opinions from both sides of the spectrum and chosen what is right for us.

Steve T.

[Sophie's Mom]

Saramae,
What part of the country are you from?
Tina

[PeggyF]

Our daughter had the MQ done just before she turned 3 years old. It brought her more function than we could have imagined. I think the 12-15 months might be a guideline (perhaps even for those children who have not had primary surgery) and not so much a rule.

You have to have time to recover and finish the protocall of therapy after one surgery before you discuss the possibility of another.

Don't worry yourself over what "might" be presented to you later. Concentrate on what you need to do now and evaluate Payton along the way.

Take care!
Peggy

[CathyY]

Sarahmae,
Since we have just returned from having another surgery, I thought I would weigh in. This is based soley on our experiences with Matthew's particular injury, but I know I wanted to see as many points of view as possible when I ws in your shoes. so here goes: Matthew had partial ruptures of c5-6 and 7. Primary surgery was not needed, yet it was a severe injury. Innervation came back, but very unbalanced. Weak biceps, hardly any triceps. Shoulder flexion to about 90 degrees. Very poor abduction (to the side) The long thoracic nerve was damaged at the level of the plexus, so the scapula is very unstable and prominent. I learned all these things over time not in one "feel swoop" (Matthew is 31/2). It became clear that although he was lucky to get reinnervation, and was termed "functional", there were MANY things he was not going to be able to do without some sort of intervention. We had been going to PT and OT 2-3 times per week, and were diligent with exercises at home, yet contractures still set in. I researched both the traditional orthopedic avenues and the more recent ("unproven") approaches. It was agonizing! How do you know what to do when you can't get even get two professionals to agree, and here you are, a parent with no medical training in charge of the decision to alter your child's anatomy to impact function??? I didn'think I could live through it. But in the end, I took the leap of faith in thinking that if there were new options to explore we should look that direction. (reemphasizing here that this was the best decision FOR US). We opted for Mod Quad surgery at TCH. I can only tell you that it was nothing short of miraculous for us. The day we took the mq splint off matthew, he reached over his head and scratched the back of his neck!!! You could have knocked me over with a feather! And that was only the beginnig of the tremendous improvements he gained in terms of being able to use his arm in daily life. The world seemed to open up to him after that. Looking back, with hind sight being 20/20, I would do MQ again in a heart beat and not agonize for so long! However, that's an easy thing to say when looking backward, and you are still in the looking forward stage. So I know how sickening and scary this feels.

Matthew still continues to have problems. I have done a tremendous amount of research fearing that the subsequent problems were caused by having MQ. I am happy to report this is NOT TRUE. the MQ gave him such new and improved function and released so many contractures that he was able to make new movements(without MQ, I would have never know if Matthew's shoulder was unstable because he was severly tight and not able to lift his arm) but it became abvious that we had more to deal with. The shoulder is dislocated completely and we have a whole seies of decisons to make about that. We just returend from TCH yesterday after bicep lenghtening. Matthew's bicep tendon was so short your could see it if he tried to grab both sides of a doorway for example. It hurt him to try to actively straighten his elbow, but passivley we could stretch it to nearly straight (about 5 degrees contractrue). But what good would that do him in life if he couldn't do it on his own. the surgery went great. Very easy on him, almost no pain the day after surgery. We were supposed to have caps surgery as well, but Dr. Nath felt that matthew's particular injury and subsequent innervation made him a poor candidate for success, and he encouraged us not to do the caps, and to take the more traditional orthopedic route. This was a shock to me since I was mentally prepared to do the caps. So we will go back in 5 months and do a traditional orthopedic surgery to address the arm position and function.

I am trying to just go step by step. These decisions are so hard and emotional. Even though Matthew came thru bicep lgth surgery with flying colors, today I am a wet noodle!

I'm sorry this is so long, and of course it is just OUR EXPERIENCE. But I am so at peace with my past decisions b/c my son's world has become so much bigger due to the gains he has gotten from surgery. His personality is very upbeat, and easy going, and it has not affected this one bit. He was doing a song and dance routine (not kidding!) for the entire nurse staff at the hospital the day after surgery! Last night (first night home) I had to scold him to not attempt cartwheels!

I just thought i would tell your our story. It doesn't have an ending yet. But so far so good. I hope our experience helps you in some way. Again, sorry for such a LONG post but it is very cathartic for me to write it down. Good luck to you with your child and God bless you and your family.

Cathy

[sarahmae]

Thank you so much for sharing your story. I feel like you really touched on somethings that have really worried me. I am 23, and sometimes I wonder why me? I am still a kid! I can't begin to make adult decisions about surgery. I really appreciate hearing that other people feel as lost as I do sometimes. Still we plug along I am going to get other opinions, but I think I think that I want to wait a while to see how well he recovers. Thanks all of you again for your input.

[Kathleen M]

Sarahmae

I am touch by your last message. This must be so overwhelming for you. I am OBPI, a mother and a grandmother.

I hope that you keep asking questions. It does not matter how old you are making decisions for our children is always very hard especially ones for surgery. I know this is not what you expected and you are young but I bet your a great Mom.

I did not have surgery. my Mother felt surgery was to dangerous and it was at that time. She choose to have me treated using a brace for 11 months and physicial therapy. She said she visited every hospital in NY City until she found the doctors she felt comfortable with. she did seek many opinions from many doctors. Considering the fact that I am 63 that was a big step for a person to take. The brace I wore was considered and experiment at that time.

The key to understanding this injury is education. The more you educate yourself the better prepared you are to make the right decision for your baby. You just have to learn to trust that gut feeling and go with it sometimes.

I am glad you found UBPN there are so many well informed parents who post to the message boards.

Try to take time just to enjoy your baby the time passes so quickly.

Kath

[sarahmae]

Thanks so much for your post. I can't possible understand how it must have been for you growing up with BPI with out all resources we have now. My gramma is 63 and she can't believe all the things they can do now. I wish you well. Thanks
Sarah
Also someone asked me earlier which part of the country I was from. I am in Oregon.