United Brachial Plexus Network, Inc.

I have a 15 week baby girl who can only make a fist. She is scheduled for the 7 hour nerve surgery Nov 1. Her surgeons do not recommend an MRI. They have a CT scan scheduled. The pediatrician insisted I get an MRI. She sent me to a different ortho doc for a 2nd opinion (b/c she freaked out that my daughter's arm is turning inward and the fingers are curled) and he ordered the MRI. I found out today that the doc who ordered the MRI has drastically different opinions than my surgeons and had personally clashed with my surgeons in the past. I'm afraid he will call my surgeons with the results and the surgeons will be mad that I got a second opinion (especially by him) and got an MRI done. ** I don't want to piss off the surgeons before the big surgery. What do you guys think? We are so confused what to do and what not to do.

Good morning Beth,

Congrats on your not so new baby girl. Mine is now 13 y/o and it sometimes seems like yest. that she was going through all of that. She was 16 wks when she had her first of 5 surgeries. One of the best pieces of advice I can give you is that this injury is full of differing opinions and you need to take a step back and not get caught up in it. Be an observer. Take time to think about what you were told and have someone (or you) write everything down a medical professional tells you. Over time you will be the expert! When given differing opinions I usually asked myself if I followed the advice would it hurt my daughter? An mri will not hurt her. I haven't found them to be useful for anything nerve related, but they are great for shoulder/elbow bone issues. You can never have too many opinions on this injury, but my best advice has always come from this board.

Good luck and don't get so caught up in the injury that you can't enjoy your baby. Tess only has about 30% function of her hand/arm, but I swear her life has been a wonderful one.

I work for 6 surgical oncologists. You would be surprised at the things doctors say to eachother. A good doctor or surgeon will have the patients best interest at heart and won't be mad if you get a 2nd, 3rd or 4th opinion. I often schedule patients for 2nd opinion visits to the doc of their choice, we get the consult info and the 2 or more docs discuss the best treatment at a meeting. I wish you the best with your daughter and just go with your gut and YOUR research for surgery, and other treatment options.

Marlyn mom to Javier 3 robpi

p.s Javier has seen 5+ docs for bpi and I only had 1 tell me that he was the best and the others were wrong. Needless to say we chose another.

Hi Beth
Congrats on your baby girl. I'm sorry we have to meet like this but I totally agree with sharon this is the best place to get information and talk about your fears. My son frankie is 14yrs old he has had 4 surgery's the last was this past Nov and I have to tell you after that surgery the surgeon a BPI doctor had 3 others surgery's he said would help we then saw 2 other bpi surgeons that all totally disagreed with him but not for the same reasons and none of them really liked him but that was not my concern nor was pissing him off. My concern was my child. After getting the 2 other opinions we made the choice of not going through with the surgeries. Franks 1st surgery was at 6 weeks old they told us to amputate the arm, we left and went to 2 other Dr's a total of 3 different states, the second doctor made us feel very uneasy. The third Dr Laurent A Neuro surgeon and a great dr and caring man was the one who did Franks primary nerve surgery at 11 months old in Texas we live in NJ. Sadly Dr Laurent died a few years back.The surgery took only 4 hrs and he grafted 2 nerves and had to repair 3 others.Frankie now has feeling in his arm but still not a lot of movement. My question to you is The doctors you are seeing are they BPI doctors? if not find one, also get as many tests and opinions as you need to help you, don't rush into anything, and yes an MRI is important Before Frankie's surgerys they have always done an MRI and an EMG this shows the doctors just what needs to be done before they do the surgery. Frankie has no use of his hand or wrist and can't raise his arm any higher then his chest but he plays baseball ties his shoes and does everything his friends do just in a different way and now has a girlfriend with 2 others chasing him. I know the feelings you are going through we have all been there and are here to help but just know that no matter what happens with your baby girls arm she will be ok if you just love and accept her for who she is. She will also amaze you.
My prayers are with you Mare
PS If you have a Childerns Shriners Hosp in your state that is a good place to go and there is no charge so you can get another opinion without having the hassel of insurance companys they are another headach you don't need right now. Also see a OT or Pt some childern have recovered without surgery.

Beth:
No doctor should be upset that you got a second opinion. Doctors are used to conflicting opinions, but a doctor who gets upset at second opinions raises BIG RED FLAGS. I have gotten second and third opinions and the other doctors have been only interested in what their colleagues had to say.

By the way... piss off anyone you want! This is your child and you are her advocate. Who cares if they like you? Ask the tough questions. YOU have to feel secure in who is doing the surgery-not the other way around.

As for the MRI itsef... they are of questionable value in a 4 month old. We had one done on my daughter and it really didn't show anything. However, she had a flail arm and hand before her surgery.

Your pediatrician is right for sending you to someone else for the second opinion, but the internal rotation and fisting will be of no surprise to a bpi specialist. Keep opening those fingers and massaging them. You might also want to keep a "nose" on her hand too. When they fist, they don't get air to the hand and it can start to smell. If it smells too much, let your ped. know... some kids develop yeast-type infections in a fisted hand and under the armpit (that was juliana's problem area).

Please check our medical registry and contact some other docs. Our docs are so, so user friendly. I agree to check out a Shriners. There is a Shriner's in Sacremento, CA and one in Philly. We take Juliana to Scott Kozin in Philly. We also go to Peter Waters in Boston. And we have gone to see Michael Pearl in LA. I've never had them "mad" at me for traversing the country.

If you have any questions, email me,
claudia
claudia@ubpn.org

You all made me feel so much better. Thanks for your support! Looking back at my post, I can now see the situation more clearly. My daughter and I were assaulted at birth. I'm really feeling like an abused victim, and scared of anything that could harm her or myself again. I have relatives (a doctor and a lawyer) that keep emphasizing that I pissed off the ob doc (not true) and hopefully won't piss off the surgeons or any other doctors...I need to tell them to shut up and keep their distance!! It is frightening enough to deal with. I will keep reading the posts on the general message board to gain understanding and strength and support from you all. Thank you!

Beth
Congratulations on your beautiful new baby.
I am glad you found us and the support you so badly need.
You are the best one to protect and take care of your baby. You are the one who will have to make the hard decisions. Well meaning relatives are just that. They have no idea what you are facing nor what events took place in the delivery room.

I'm happy that you have a place where others understand your fears and concerns.

Kath robpi/adult/67

"You are the best one to protect and take care of your baby. You are the one who will have to make the hard decisions. Well meaning relatives are just that. They have no idea what you are facing nor what events took place in the delivery room."

AMEN, sister! Wow - well said!!!!!

I have learned that on this journey with OBPI you learn who you can really count on as far as family and friends go. Maybe the lawyer and doctor family should leave you alone for a while. I am sorry that they would even say such a thing to you. Best of luck to you and I agree "piss off anyone you want to when it comes to your child".

Marlyn