advice for daughter with tbpi

[Motherbird]

My daughter is 3 yrs old and we were involved in a car accident. We discovered somehow in the accident she received a bp injury. That was 6 months ago. We live in MN and have been going to Gillette's children's hospital as well as our local clinic for ot. She has made great improvements in the last couple of months but she is obviously not %100 back to normal. She had MRI and 2 EMG. The second EMG showing no change than the first 3 months earlier. We have another appt at Gillette's next week. We also have started the process of getting a second opinion at Mayo clinic.
Is a second opinion necessary? What kind of questions should I be asking now? They are talking of possibly surgery. It is hard because she is still improving but I have read there is a timeline of when surgery will be helpful. I don't know much about this type of injury but I feel like i have to be making the right decisions for my daughter at this time. I also know that our case is a bit unusual as she is a child but not born with the condition. Any advice or information for my family? Thanks for reading.

[Christopher]

I would definitely get a second or third opinion with out second thought. I met over 12 specialists before I settled on the Mayo Clinic.

Time is an issue. Surgeries used to be done around 6 months after injury to see what would regenerate on its own, but now they are doing them between 4 months and days after injury because of better chances of recuperation the sooner repairs are made and better diagnostics.

[RobertRacer]

I would definately get a second opinion if thats available to you. Your window is short so it cant hurt to listen to what the docs have to say. I don't think they'd recommend surgery for you child if yhey think there is a greater chance she'd recover without.

May of us have grapled with the surgery question. I wanted to wait a little longer too to see if it'd come back, but in the end surgery was best for me. Remember your window for this is relatively short.

[PRISCILLA]

Im sorry to hear about your babies injury. There are a couple of others that used to post here that had kids injured TBPI at that age. Ill see if I can help look those up for you, maybe you can talk to them. Yes, definitely a second opinion couldnt hurt. Mayo is a good place to start.

[PRISCILLA]

I found 2 of the most recent TBPI toddlers for you.

"tk" Tammy Luczynski
tamluc5@yahoo.com
childs name is Masen, injured at age 3


"Ellas daddy" Aaron woodruff
apwoodr@yahoo.com
childs name is Ella, injured at 20 mos.

http://ubpn.org/messageboard/thread ... 958#159958

[AngelaW]

Where in minnesota are you from? I'm also from there and your accident must have been only a few months after mine. Maybe we can help each other out
Listen to these other posts and get her to Mayo as soon as possible! Like they say, there is a timeline for optimal surgical results and she is nearing that. Rest assured the doctors you would meet with specialize in bp injuries and pediatrics so they are experienced with children's injuries would not recommend surgery unless it was necessary.
I wish you a lot of luck.

[Motherbird]

I live near St. Cloud. We went to Gillette's this week. I posted on the general message board about how that went. Thanks for the advice. They did not recommend surgery. We are still debating on whether to still get a second opinion from Mayo. It is hard to believe they can get an accurate assessment of how she can move with a 20 minute OT appointment. But I also don't want her to have surgery. I guess, they are the experts and know what they are looking for.

[Christopher]

I hate to be blunt, but your daughter's arm & future depends on a proper diagnosis & treatment. Many people come to these boards after negligent diagnosis and treatment from "top" doctors who really have no idea how to best treat this injury and are not aware of the best surgical procedures. Maybe your doctors are right, but why would you ever want to risk the chance that they are not and find out after it is too late that you could've done something about it? You asked for advice from people who have experience, but you are not taking it.

I saw the best neurosurgeons on the west coast, in Los Angeles and San Francisco, and some recommended to do nothing and wait, some amputation, and some offered surgical options, but not one of them came close to the expertise and understanding of this injury that the surgeons at the Mayo Clinic did. They are a world leader in dealing with this injury. I obviously take this injury personally, and just want what is best for your daughter's health.

I am curious, what is the harm in getting a second opinion?

Christopher

[srhykerd]

You most definitely need to seek a second opinion. I don't see how the doctors could evaluate her in 20 minutes either and I don't think the assessment would be accurate. I would go to the Mayo Clinic where the docs are very familiar with this type of injury. My daughter wasn't fully assessed until many days of testing and then they spent 3 hours talking to us just about the options. Your daughter will have to live with these decisions for the rest of her life. No one wants their child to go through surgery but if it is going to improve her quality of life, it's worth it!

[AngelaW]

I'm from Owatonna; quite a bit further south. I hope you guys got some of that warm weather we had down here in southern MN. I read the other post about your doctor's visit and it sounds like she's had a little spontaneous nerve recovery which is excellent! I have to say though, go with a second opinion as this particular type of surgery can truly be life changing.
Just from reading your posts, it sounds like you want to go to mayo but you're afraid they'll recommend surgery. The three doctors at mayo who specialize in bp injuries work together as a team and are considered among the best in the world in their field. What's the harm in getting their opinion? They would not recommend surgery unless it was necessary. They also might agree with Gillette's and not recommend surgery which I would think would put your mind at ease. The ultimate decision, surgery or not, is still yours to make, but wouldn't you want to know you have truly explored all of your options before you make it?