SO confused and TERRIFIED

[Gina]

Hello - We have surgery (caps and bicep lenghthening) scheduled for Nov 12. And I just read the very lengthy messages about "experimental". I have always wondered about most of the points brought up, but I really wish I hadn't read it. Now, I am terrifed I will do something either unnecessary or something that will hurt her. Mckenzie is 2 and we had the mod quad. Dr. Shenaq told us after surgery he didn't think she would need anything else. Now we hear she needs the caps and bicep lenghthening. I am so confused. She has lost some range, but not a whole lot. SHe still does anything she wants with that arm. She doesn't dislocate, and I don' t think she has any pain. SHe does tend to keep her arm slightly bent - but I can passivley ROM. Sorry so long, I just need some support, and maybe some questions to ask. THank you all so much.

[Kristie]

Gina,
Although your surgery is coming up fast... maybe you could get a second opinion from another BPI doctor. If it helps you feel better you could postpone the surgery until your have your answers. Who is doing the surgery at TCH... maybe you can e-mail them and ask your questions... why she needs it when they thought she wouldn't... what is it going to help her with now and long term?
One other thing I find helpful is talking with my husband about it. He knows all about Ian's situation and not really much about other... I am the one who has done all the research ect... so when I ask him his thoughts he doesn't usually have to deal with all the stuff about knowing everything... it really helps me to see things from his perpective. Am I making sense?
I hope you will find peace about whatever decision you make!
Blessings,
Kristie

[claudia]

Are you sure she is not dislocated? The caps is to repair dislocations. The presentation of a posterior dislocation is very obvious, once someone points it out to you. The shoulder/arm is rotated in and the elbow sticks out.
If you don't think or are questioning the idea of a surgery, send another video.
Remember: the surgeries are recommended, not required. If you want to wait, wait. If you want to go ahead, do so.
I have a friend whose daughter was recommended for caps and she just couldn't face another surgery. So she delayed the call...no-one is worse for wear. And, I think they all did better emotionally by waiting.
hope it helps,
claudia

[marymom]

fear SUCKS
but it can be a great motivater.
Its so easy to just do what everyone says to do, with knowledge comes power, with power comes responsibility...
I hate that
blessings of lightening for your load,
noone ever makes a completely informed decision, not the surgeons, not the parents who decline surgery, and not those who opt for it- but you can become as informed as possible...

[Elisa]

Gina

Part of me feels horrible if some of your fears and questions are coming from some of my ramblings which were way too long (sorry). Yet, I guess we all need to be aware of the uncertainty, very different opinions and I guess "experimental" nature of some of these surgeries. If you have questions get them answered and not just the round about answers that sometimes we get. If you are having doubts maybe there is a reason. Have you asked if you really have anything to lose by waiting a little longer until you can gather more information and feel confident in your decision? We have also been recommended the bicep and caps. I have been gathering a lot of info., and yes, I am confused and know that for me right now I cannot commit to the surgeries (at least not yet). If you want to talk more feel free to email me. Once you get all the information you need, ask all the specific questions you need and perhaps get some other opinions I think you will feel more confident in your decisions. I have a friend who recently struggled with 2 surgical decisions. After researching it and getting some other opinions she backed out of one of the surgeries and went ahead with the other. She is feeling very confident and good with her decision. You will figure it out.

[francine]

gina - the best thing you can is to keep on picking at it until you get the answers that you need to make a decision that doesn't put a lump in your throat (either way). You will KNOW when you have made the right decision for your child. It will be very clear and you will not be stressed about it (as much at least).

good luck,
francine

[m&mmom]

Gina,
We normally get two opinions, we know one doctor is more conservative and the other is more aggressive. We make lists, research, etc. Take your time and sort through everything until you feel comfortable with everything and know that you're making the best possible informed decision that you can.
Cindy

[Karen Hillyer]

Gina
I think there has been excellent advice given in this thread, if you feel unsure about surgery, check out all the possible options remember YOU are your childs best bpi specialist YOU know her better than anyone else does.
When Gavin had his third surgery last year - like you we had been told he wouldn't need any more surgery, I was VERY comfortable with the decision, and the main reason for that was that I had noticed his loss of function. He had gradually lost function and range of movement over about 3 years and my local Doctor kept telling me it was because he was choosing not to use his arm, but my instinct was that it was something more. We went back to see a bpi specialst who hadn't seen him for 4 years and he agreed with us, that Gavin had lost a lot of function, so we were comfortable with the decision to operate.
If your daughter is not losing function and is not in any pain, ask your bpi specialist if she will come to any harm if you wait a while, if the answer is no she won't, then that gives you some breathing space.
I wish you all the strength in the world to bring you through this difficult phase.
blessings
Karen