United Brachial Plexus Network, Inc.

and of course marymom knows that I always come to bat on the other end of the spectrum...

Maia at 7 months did not have biceps and when they did surgery there were 3 ruptured nerves there. Ruptures and avulsions just don't heal on their own...if they did then none of us would be here - everything would be honky dory and we'd be going on with our lives.

Chiropractic, acupuncture, and all of the alternatives I do including daily Reiki and prayer did not change the fact that Maia's injury was severe and that her recovery has been horrendous with many setbacks and 4 surgeries. The most (and best) that these alternatives did for her is give her inner peace/strength/energy (which of course is wonderful) - but they didn't stop the contractures from forming, the dislocations from occuring, etc.

Sometimes surgery IS EXACTLY what needs to happen in order to get any return. For us it wasn't about movement per se but about quality of life. I wanted Maia to have a chance at a better quality of life with less pain than what was reported to me by all the adults.

It's not an easy decision to make.

You also cannot compare children.

And I honestly do believe that the children who have earlier nerve grafting done have the better recoveries. I've seen those results in the kids I have met.

-francine

How do you know that surgery will prevent pain in later life? Any surgery involving bone/joint tissue actually increases the chances of arthritis. Some of the adults report pain, some don't. These are not easy decisions and we should be wary of making assumptions about long term outcomes following surgery.

I don't know anything for sure... I just know that sitting there and doing nothing was not the answer for us. In my professional practice I see middle aged people who are so steeped in pain for years and years - I study it - I contemplate it- what could they have done to prevent the level of deterioration and the level of pain.

So I've tapped into everything I have learned (from way before I even knew anything about bpi) and added to it my own experiences with my own body and then my experiences from working with hundreds of clients with a good mix of those having surgery and those that didn't have surgery (for all different things)and that is how I came to the conclusion I did.

There are no guarantees in life for anything. But there are things we do that can lessen the negative consequences or heighten the negative consequences. And those decisions are based on trust and faith.

You see - I am not disagreeing with Marymom - surgery is not for everyone. BUT I wanted to clarify that surgery IS the right thing for some. Parents need to think about both sides of the coin.

I can feel your frustration. My little girl Courtney is age 3 and we have avoided having primary surgery as an infant because after we were scheduled for the surgery Courtney started to gain some more movement and function. We waited and she got back what the surgeons thought they could help her get with the surgery..but we were on a fine line there..if you wait to long the primary isnt as effective..but i didnt want to rush the surgery because she was improving..it was a scary time..and when we got past that..i thought we were home free..no surgeries..quite a bit of function (with her hands in front of her)..but here we are again..age 3..still cant reach her arm above her head etc..some tightness..and we are now once again scheduled for surgery...so just when you think you are home free..you get hit with a tornado..brings back all the anger, fear, sadness etc...its an emotional roller coaster than i wonder how i am going to get the strength for the next ride..but somehow..i do.. and thank you so much for the emails francine..you are a blessing to me and my family..please keep our little courtney in your prayers..her muscle tendon release and nerve decompression surgery is scheduled for july 18th at Pitts Childrens Hospital in Pittsburgh, Pennsylvania. I will pray for you and your little one..keep focused and hang in there..
hugs
Lisa

These decisions we make as parents do not come easily. My daughter did need primary surgery (2 avulsions, no chance of recovery without surgical intervention) and I knew in my heart it was necessary. I prayed for a miracle up until the day of surgery but it wasn't meant to be...I decided that our miracle was finding a fine surgical team that repaired the damaged nerves. 2 years later mod quad was recommended but, the day before the surgery, we were turned away! The in-person eval. changed the opinion. We've done loads of therapy (pt/ot, e-stim (tes & nmes) and now we're really into swimming as therapy. Our daughter--just turned 5--is still improving! Now it's a matter of building strength. She can even do 4 crawl strokes with that "injured" arm now. I never dreamed I'd see the day she could do one crawl stroke let alone a series. We've been blessed with an incredible recovery. Our decision for primary surgery was "easy" because the deficits were so obvious. 2ndary surgery wasn't so convincing but, once we were turned away, I realized that our surgeon wasn't going to do anything unnecessary. He was thrilled he could send us home! Once you have the in-person evaluation you'll have more information to go on in the decision making. Be sure to have your list of questions to ask Dr. Nath...don't ever second guess what you decide for your child. No one but you knows what is best.

I just wanted to chime and with an agreement that it is your decision, and you can decline surgery. We are adults and the ultimate decision of our child's treatment is up to us, not to be dictated by surgeons. My 3 yr old ds has not had surgery either, he has what I have been told is a moderate injury. We choose not to presue the surgery route, and he has continued to gain, slowly, but surely. I do not discuss my ds or our decisions on this forum. However occasionally I do feel the need just to stand up as a voice of one who has opted to forgo the surgery route, and my ds is thriving and gaining.
Pam

I wanted to say that I do appreciate those who spoke up about not having surgery because I find it very helpful in making a decision for my son. Surgery is difficult for anyone and while we will do it if it can make a difference and TG it often does, I do agree there are many benefits to the other side as well. Healing is sometimes a miracle and they do happen and sometimes our kids make more progress that we thought or imagined. God bless each one of you parents who love your kids so much and are and have done your best for them. It's so neat to hear how you fight for them and are really into doing everything you can to help them. It has help and motivated me very much! Thank you! Renee