choosing best doctor for surgery

[Jane]

I am new to the UBPN. My 10 week old daughter has OBPI with finger and wrist movement and a tiny bit of movement to her shoulders. Unfortunately, lately we have not seen much improvement. I understand that microsurgery may be in her future, and was wondering how do I choose the best doctor for her surgery. We (and our insurance) are not limited to a specific geographical area, except the US.

Also, can any parents reply about their surgical experiences with children having early microsurgery (e.g., 3 - 6 months) and what the outcomes were?

Thanks

Jane

[claudia]

Jane:
A couple of things.
1. we have a medical resource page on this website. contact as many doctors as you feel comfortable with (I recommend at least two, three is better).
2. choosing a doctor is an incredibly personal decision. Some parents want a doctor, at this point, to just give them the facts and they don't care about bedside manner. Other parents really, really want a doctor who seems caring. Others want a doctor who seems to have a timeline for surgeries, as opposed to wait and see.

So, you have to start a dialogue with some of the docs. And then you and your husband need to decide if you want to be aggressive in your approach to the injury or not. Again, that decision is personal. This injury is life-altering, not life-threatening. Don't let people tell you that you "have to do a surgery". You don't. You can use multiple therapies and "life-style" therapy and move on.

We have been to many doctors. Our daughter, who is almost 7, has had three surgeries: nerve grafting at 4.5 months, "modquad" at 14.5 months, and biceps lengthening at 39 months. Not all the same doctors, but at the same hospital.

We have traveled to Houston, Boston, Philadelphia and Los Angeles. Sometimes the answers are the same, often times they are not.

It is, I will admit, very frustrating when you don't get a consensus from the doctors. However, there is something to learn from each of the doctor's viewpoints. In the end, you need to go with your gut.

good luck,
claudia

[crestmom7411]

My son Matt was 5 months old. Feel free to email me with any questions you have. I would be happy to help in any way.
Kelly

[crestmom7411]

Sorry forgot, my email is crestmom7411@yahoo.com

[admin]

i have to reply to you because i remember that 10 week period in my life. me=HORRIBLE SADNESS, GUILT, DEPRESSION!!!!that is when i staarted my jurney around the usa. our insurance and finances probably helped in making my decision. i will email you and talk more personally. this is so hard and i had no internet at the time and wished i had some of the wonderful people that i met here. good luck!

[admin]

I just want the best doctor for the surgery. I don't really care about his bedside manner as long as he is experienced and has great results. I am a bit familiar (looking at websites, publications, limited emails) Dr. Nath, Waters, and I have heard of Shriners in Philadelphis. Are these the ones you went to? How much function did your daughter gain at each one? Which doctors were you happiest with?

Thanks

Jane

[admin]

Sorry. I just read my email and realized how short it sounded. That is what happens why I try to multitask. Christina is my 7th child, and I was trying to give a spelling test to my 5th grader at the same time.

To answer a few questions....she had finger and wrist movement at birth with a flaccid arm for about 10 days. At 2 weeks she was able to move her arm into her body (adduction), 6 weeks later she moved it out (abduction) - unfortunately these are very small movements of 1 - 2 inches. I have noticed over the last day or so that she can hold her arm off the bed for about 3 seconds when stretching in the morning. No biceps.

We have visited OT since 8 days old, and have seen the Brachial Plexus Center in Cincinnati since she was 5 weeks old. We are thinking about visiting Boston next month.

I really would like to hear how other children were prior and how you decided on doctors and how happy you were. Also it seems that the age of the child at first surgery is still controversial.

Thanks

Jane

[Mandie]

Jane, I thought this would be interesting for you to see while you are getting opinions. It might be a bit of encouragement for you

http://ubpn.org/messageboard/thread ... adID=15126

[admin]

Hi I'm new to this site now but have been around for years my son is 13 and had his 1st surgery with Dr Laurent the 2nd with Dr Sheaque this was in 1994 and 1995 they did all they could at the time and my son grew up to be a well adjusted teen doing everything others his age do. Growing up he always said no more operations the doctors felt if he said no it was no since he would be the one to do the time in splints and therapy well now at 13 he wants to see if there is anything more that can be done he says hes afraid that if he doesn't do something now it will be too late later on down the road I emailed Dr Nath who said he feels theres alot that can be done does anyone have a teen who has had the tendon lenghtening or surgery on the hand his is pretty bad if so please email us at Tinny61@aol.com Thanks MaryAnna

[Miah's Mom]

Just wanted to say that keep in mind that each and every injury is different. That with or without surgery nothing is guaranteed, no matter how "experienced" the Dr. or hospital. And no matter what, you have to decide what is the best decision for not only your daughter, but for you and your family. I hope you find what you are searching for. I know this is a very difficult time. Your daughter, family, and you are in my thoughts and prayers.