1st surgery...and scared

[Jazzie]

I have an 8 year old daughter with obpi. We are considering surgery for her within the next 6-8 mos.(have to get all insurance questions answered 1st). It will be her 1st surgery. (tendon transfer)
What I'm very concerned about is whether she may lose what she currently has. Yes she wings out, but not a whole lot. She has pretty good range of motion, (can reach arms straight up and out,(cocks her body a bit to compensate), plays piano and flutophone, writes absolutely beautifully, and is an artist like her mom.
She does, however, posture her arm, (elbow out), cannot supinate, has difficulty touching her face without the aid of her right hand, and cannot reach the back of her head. She has never had any pains or cramps, other than tightness, and I would hate to start something. Most people don't notice her injury but we know it's there.
I have heard so may things about others who have many more problems with their injuries that I'm not sure I should put her through surgery although I've heard many are better off for having it. She is not crazy about having the surgery of course, but understands that her arm may work and look better after surgery, so we really don't get too much opposition from her. I would hate to make the wrong decision when the surgery could really help.
I want her to know that her father and I did everything possible for her and I don't want to let my fears get in the way of her progress.
Please help if you can.

[Michelle_16]

Hello.
I can understand your concerns bcos i am in the exact same position. Your daughters injury sounds the very same as my injury. I aslo play the piano and the trumpet. The posture of my arm is the thing the doctor wants to fix by offering my a rotational osteotomy which will improve the posture. But i do not know whether it is worth it and right now i feel i will refure the treatment because i may not have all my range of movement after the op and i dont think i could play the piano without the movement i have and im goin to study music at university this yr!

I dont think an operation is needed if your child is not in any severe pain and if the injury is not very noticable and if the doctor doesnt think it is NESSESARY!

Its your choice but if that was me i would probably leave it.

Michellex

[admin]

He does think it's necessary. He said she would be a good candidate. Looks like I have about one hundred questions to ask him too!

[Jazzie]

He does think it's necessary and has told us that he thinks she's a good candidate. I've heard very good things about this doctor so I don't question his abilities and opinions. I'm just afriad of the whole thing. I have about 100 questions to ask him....

[francine]

Jazzy - just ask ask ask and ask again until you fully understand what exactly will be lost and exactly what will be gained and what the future considerations are for both losses and gains.

I truly believe that in order for a surgery to be successful you need to view it as a positive opportunity - YOU must have trust in the surgery and in the surgeon yourself. So don't say yes to anything until you are TRULY certain about it.

BTW - if you go ahead with it make sure that you get an appointment with a Child Life Specialist for your daughter to get a tour, etc. Every hospital (I think) has Child Life Specialists that will help your child get acquainted, discuss fears, etc.

good luck,
francine

[admin]

Jazzie:

I completely understand your concern regarding your child as I am in a similar boat. My son is facing surgery as well although he is much younger at 7 months and is a lot more limited on his movement. Honestly, I agree with both Michelle and Francine. It is something that you, yourself need to research and ask as many questions as you can think of. You could even talk to more than just one doctor regarding the same questions and see the differences in their answers. It sounds like your daughter is very talented and I wouldn't worry about the loss of movement/activity after the surgery. There is always therapy that will help to relearn what is lost during surgery (if anything is lost). Francine is right as well. You have to be completely comfortable with any decision that you and your husband make. That is a huge key. In my opinion, if my son were in the same boat, I would probably be as challenged as you with making such a huge decision but I would be leaning more against it than for it. The soupination is tough even for those of us that don't have the BPI, meaning that you can tell how many muscles and tendons are used. Seems like she has too much going for her to do surgery now.

I hope that my opinion has helped you. Good luck and let us know what you do!

Karen

[admin]

I have an 11 year old daughter with obpi. We are also considering surgery. She is very functional with certain limitations (she can't put her hair in a pony tail, put both hands behind her back, her left arm over her head) She has learned to compensate very well as I'm sure you know. She is a cheerleader (capitan of the squad). My husband is all for the surgery but, I am not. I'm greatful for what she got back. I'm very afraid of a set back or something going wrong. She was examined by a doctor from Texas Childrens Hospital in Houston. We feel we should do all we can .A part of me feels she is happy and nothings stops her and I should leave her alone. I'm sorry I can't offer any help except to let you know I'm in the same boat. The surgery is called a quad. This procedure takes 45min to 1 hour

[Joshua]

Ask your doctor if he can introduce you to other of his patients (with their permission) who have undergone similar procedures. We have gotten to meet other OBPP children and their parents through my daughters, physical therapist and it has helped in many was to get to talk with and compare notes with other parents in a similar situation.

Ask the doctor if he would be willing to give your phone number to the parents of some of his young patients so they can contact you to answer some of your questions.

This approach will generally get responses from patients with sucess stories so it will not necessarily give you a true picture of every outcome.

Hope this helps, Joshua