Primary Surgeon Recomendations

[admin]

I only wish that I truly believed every parent made the "RIGHT" decision for their child regarding surgery or surgeries, but in all honesty I do not believe that is the case. To me the "RIGHT" decision would imply the best outcome for the child with the best results. I do not believe that we are all fortunate enough to make the "RIGHT" decisions.

There are so very many factors that play into our decisions, including which doctors advice we are listening to, how much we question or challenge what we are being told, how much research we do, what specific surgical or non-surgical outcomes will indeed result, what are the physical trade-offs for further altering the body or not altering the body, how much we listen to the advice of other parents or message boards, or how much we take in an unconscious pressure to do a particular surgery or not, etc., etc., etc.

I wish I could say we all made the perfectly right decision for our child, but I do NOT by any means believe this is true. However, I sincerely believe that we all do the "BEST" that we can based on the information that we may have or may not have at the time. We also do the "BEST" that we can in trying to trust whichever doctor we chose. We do the best we can with prayers and tapping into our intuition.

I am not trying to challenge or debate this issue, I just interpreted or misinterpreted the "RIGHT" thing as being the truly best thing for our children and I think there are many times where this is just not the case, although I wish I could convince myself it was.

It is a VERY difficult situation for everyone and I feel for all in this horrible decision making process. It can become quite overwhelming, especially the more you explore options and discover the lack of knowledge in this particular field even among the very top specialists. I know people do not like the idea of it, but I have come to believe that there is much more unknown about this injury, related surgeries, etc., than there is known.

[admin]

Francine:

You are so right! When I would ask about others opinions with surgery or no surgery I STILL knew that Ella was an individual who had a different injury and would also have a different recovery since no two are alike. Thats why I ALWAYS went with my gut no matter what happened and no matter how many people said one thing or another. Now, when I look back, I am very thankful that I went with my gut b/c I know I made the correct decisions for Ella. I did have a lot of Faith...that helps so very much! Like you said, I did so much research, asked tons of questions, but most importantly...I followed my heart!! Your advice on this post is more than excellent...it is SO TRUE!!
~Krista~

[claudia]

Dear Guest:

I no longer feel like "victim of the medical community". And I didn't feel like one at TCH, either.

If you do research, and get as many opinions as you feel are necessary to feel comfortable, you aren't a victim anymore.

And as for surgeons just jumping at the chance to cut--perhaps you need to change surgeons. At TCH they are happy to say no to surgery if they don't feel it is necessary.

We know that our decisions to do surgery and to be aggressive in all areas of Juliana's treatment have aided her tremendously.

claudia

[Francine_Litz]

Claudia - I've read your post over a few times now and the thing about not being a victim anymore - yes - you are right! I'm in the same boat as you. I know that our aggressive treatment is what's brought Maia to where she is and I don't regret a moment of it.
-francine

[RyansMom]

Wow! Everyone's input has been VERY MUCH appreciated! This has been extremely helpful, and has confirmed my original gut instinct, which is to get as much information as we can. I guess, one question is, when is the absolute longest you would wait, before going ahead with the surgery? Meaning, if you weren't getting the bicep movement at 3 months, 4 months, 5 months, or ??? months, then would you go ahead, knowing it was most likely not going to improve on its own? This is what I'll ask the surgeons, but would appreciate hearing from anyone who may have experience with having to make this decision. BTW, Ryan was 2 months yesterday, and a big 14 1/2 lbs!
Thanks to you all for responding, and God Bless all of you and your little ones!

[Francine_Litz]

If I had to do it over again.....

I wouldn't wait at all.

I would get an EMG by a great clinician (probably at the bpi specialist office or one recommended by the bpi specialist) and if the EMG showed any nerve damage at all, I'd be in there ASAP... faster then they could get me an appointment.

[claudia]

Well, Francine, give up the guilt!!!

However, Juliana had an EMG at 2 months old and it showed flat lines. I have learned that flat lines and health do not go hand in hand!!! (you don't want flat lines on EEGs, EMGs, EKGs...). Walked out of the hospital in tears. The tech told me that he had seen results like this and then kids were "flapping like birds" 2 months later. I wanted to tell him to just shut up.
We had a follow up EMG a month later. Same results with perhaps one squiggle down at the forearm. This time he wouldn't let me see the screen.
I KNEW that we were in trouble. I could feel it. Fear does different things to different people. For Francine, initially, it caused her to wait. For me and my husband...it made us want to do, do, do. We had to FIX this. I especially felt, at that time, that I had done something wrong and I had to make it right (I am a virgo--my friends who belive in that say that this is the reason I am such a perfectionist).
For us, finding TCH meant finding people who felt like we did. They wanted to fix it too.

So, get the all the info you can. Listen to that voice inside you. I did. And at 4.5 months we did surgery. I think it was instrumental in Juliana's recovery. So was a lot of therapy with a really good therapist, so was using every modality I could get my hands on--aqua therapy, brushing, swinging...now horseback riding... We are aggressive in her treatment and have kindred souls in Texas. I still listen to that voice--sometimes it tells me to back off. I listen to it then too.

By the way, I no longer feel that I did anything wrong that day. When I talk to people about the injury, I can hear the difference in my voice. I no longer have that anger, just passion. Juliana just turned 4. It has been a long 4 years. I no longer think about the doc who did this. One day I will probably mend fences with the people who I feel abandoned me when I was at the depths and trying to deal with this.

So, back to your original question on surgeon recommendations...even though I live right outside NYC and a NY surgeon would have been less expensive and easier on my family, we went to TCH. And in terms of my child's care, they are they only place for me to go. I get second opinions, but that is all they are.

I hope this helps,
claudia

[Barbara]

Making a decision for your baby to have surgery or not to have surgery is very difficult. Try to get as much information as possible. When my granddaughter (lobpi) was born, we were told by the hospital pediatrician that there was no surgery available for erbs palsy! Thank goodness, I got on the internet and found ubpn!! My daughter and her husband took my grandbaby to a pediatric neurologist who did an EMG and told them there was no indication of any biceps, triceps, or deltoid. He recommended therapy and did not recommend surgery. By then, we were reading about TCH and the bpi clinic there. My daughter and husband took their 4-mo. old daughter to the TCH clinic and got an evaluation from Dr. Laurent. At that time, my granddaughter only had a slight shoulder movement and could wiggle her fingers a little bit. Primary surgery was recommended and at 5 mo. she underwent the surgery. It took almost 4 months before we began to see results from the surgery. Of course, during all this time, my granddaughter was also receiving o.t. and p.t. Before her mod quad at 12 mo., she underwent another EMG by the same pediatric neurologist in our area and he was definitely surprised to see that she showed enervation in biceps, triceps, and deltoid. Now, at 21 mo. and after a mod quad at TCH when she was 12 mo. old, my granddaughter is doing very well, indeed. I just wanted to let you know our experience because I believe it is helpful to hear from others who have had to make such momentous decisions. Again, good luck to you and your child!!

[RyansMom]

Barbara, Claudia and Francine, (and all who responded)
You really are providing me the information I'm looking for. So thank you so much for sharing your stories. I really believe that these unfortunate injuries will make us much stronger and more compassionate human beings! Keep the faith!
Trish (Ryan's mom)

[m&mmom]

Every situation is different. TCH wanted to do a bicep lenghtening on Matthew when he only has a 5 degree contracture just because they were going to do caps - so to me that jumping into a surgery he didn't need. His pecs were cut during mod quad which I now do not think was needed but I went with the info I had available at the time. So I guess I'm saying that I can relate to what the guest was saying in our experience with mod quad. We made the best decision we could at the time but when we look back on it now it wasn't the right one.

I feel like a victim of the medical community when I have to pry information out of doctors instead of them just giving it to you. I have learned to ask a bunch of questions before making any decision - you'd be surprised about the information you recieve if you just ask instead of just walking away with what they tell you.
Cindy